Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 My daughter has been on Valtrex for 3.5 weeks. She did not start experiencing die off until the end of the first week and then after almost a week we started seeing very subtle positive changes. Those only lasted a couple days and then she went back to where she was before the Valtrex after about 3 weeks on it, less eye contact, less functional use of language, fatigue among other things. I am wondering if this could be related to her having just come down with a cold? Or is it a sign that the Valtrex is not working? Or is it too soon to tell anything? We have been feeling pretty discouraged after this latest regression. We have had hope in so many other approaches and it is hard for us to keep hoping in this case when we are not seeing changes. Any thoughts.?? Kristy Nardini wrote: > My son, too, is one of those who is responding really well to the > protocol. He has been on it for 2.5 years, since age 3.5. I have found > that > the more I keep Dr. G in the loop, the better my son fares. I know this > sounds like a " duh " , but for a long time I feared reporting little things > because I was afraid of more meds, or med changes. However, I'm learning > that Dr. G only makes tweaks that ultimately help my son to be his best. > > Kristy > > From: <mailto:%40> > [mailto: <mailto:%40>] On > Behalf Of > Sent: Thursday, June 19, 2008 8:55 PM > <mailto:%40> > Subject: Re: Aggressive Behavior > > Marcia, > > Just like many other parents on this chat list, you have given OUR > family so much hope as well. Would you mind sharing with the group, > how long your son was on medication, or if he still is? My son will > be 5 next month and we have been seeing small but steady improvements > since we started seeing Dr. G 1 1/2 years ago. > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > so " justified " in the protocol. To all parents out there, hang > in there! About the time we start to question the protocol, within a > week or two, we see what we call a " burst " in awareness, social > behavior, speech and more. > > I realize every child is different, but I am thrilled with the > results so far! > > > > > > > May, > > > > We don't know each other but my son has been going to Dr. G since > he was almost 5. At that time I was told by the " experts " that he > would never be okay and would probably end up in an institution. He > was in the 3rd percentile for speech when he entered Kindergarten. > Most of what I did was so I wouldn't have guilt later when placement > might have to be considered. Thank god for guilt. > > > > > > > > He now is recovered, and attends a major university. They don't > know he ever had Autism and gave him a half ride. He has friends, > drives and does all the things the doctors said would never be > possible. After you help them physically you have to teach them > everything they missed. In the beginning we have to teach our kids > everything that other kids just learn on their own. That used to > make me so mad. We used ABA in the until he could learn like other > kids. But be careful many ABA providers are just there to take your > money and aren't really doing it correctly. > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > off which actually as weird as it sounds is a good thing. It means > your kid can get better. A die-off reaction is when the yeast or > virus is being killed off. It usually kicks up some severe reactions > before exiting the body. I know you are never going to believe this > because your child is acting so much more autistic, but it really is > great news. It means your child will be helped tremendously by the > meds. You probably feel like you are going backwards at this time, > and it is hard to know that you are doing the right thing. However, > when die-off is over, you will see a new kid. More focused and > alert. You will be amazed by the change in your child. So hang on. > After die-off it will be wonderful! The hyper,silly, aggressive and > drunken behavior start to go away. Now they can learn to stop > pinching or biting. (Or whatever the behavior is that your child > does. Behaviors that make you crazy now, will be possible to get rid > of with teaching.) > > > > > > To help with die-off, you can give your child some activated > charcoal (can get at the pharmacy without a prescription) to absorb > the yeast that is being killed off. But be careful when you give it, > because in addition to absorbing the yeast that is existing the body, > it will absorb medicines. So don't give it shortly after giving > meds. Die-off doesn't usually last more than a week but can be as > long as ten days. If it is really bad, call Dr. G. He may tell you > to either increase or decrease the dosage of the anti-fungal. > > > > > > Once I tried the pills myself just to see what die-off felt like. > You feel like PMS times twenty. During that time we didn't do any > thing complicated. We hung out and did things he found relaxing like > watching his favorite videos. It wasn't a time I would try to teach > my son anything new. They feel very sick. Tylenol every three and a > half hours helps. Hang in there. This short terrible time will > bring great things, > > It took years for our kids to be sick and it takes years to > recover. Even if > > you could wave a magic wand and make their bodies normal, you would > have to > > teach them everything they missed while they were sick. > > > > > > You don't wake up one morning and BAM they are better. It takes > time and it is usually ten steps forward and two steps back. When my > son was little, the hardest thing was to keep talking to this kid who > gave me no indication one way or another that he cared about anything > I said or did. You have to keep treating them like they are normal > even though they don't act normal. Don't change the world to make > their lives easier, make them change to fit in the world. Some good > advice I received from Maurice was to use everything they > like to motivate them. > > > > > > > > It is possible for our kids to be " normal " and lead happy > productive lives if they have parents that don't give up on them. > You know that kid is in there, you just have to make them come out > before they make you so mad you want to kill them. Hang in there and > don't give up on them no matter how much they try to make you. They > can get better. Call me if I can help. > > > > Marcia Hinds > > > > 805 497-8202 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 I am wondering if this > could be related to her having just come down with a cold? Hi , Yes, that's exactly what it is. Any time your child is sick, *expect* big regressions. Just try to remember that these regressions from being sick are temporary! Some parents report that their kids actually seem *better* when they are sick, but most of the kids just regress. Mine really doe, but he always bounces back! The only caveat I have is that if her cold is not significantly better within about 5 days, Dr. G says it's important to have her see her pediatrician for an antibiotic. A secondary infection will prolong her regression and you want her back and moving forward as soon as possible. HTH, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 We have experienced many ups and downs the past few months due to colds and recurring bouts of the stomach flu. Now my son's summer cold has turned into bronchitis and he's back on antibiotics. Don't get discouraged. This is a journey and it definitely has its peaks and valleys. Any illness can cause our kids to regress, but I've also noticed with both my boys that the regression is rarely permanent. When they're feeling better, the gains they made return. All the best, Robyn Caroline <carrieps@...> wrote: My daughter has been on Valtrex for 3.5 weeks. She did not start experiencing die off until the end of the first week and then after almost a week we started seeing very subtle positive changes. Those only lasted a couple days and then she went back to where she was before the Valtrex after about 3 weeks on it, less eye contact, less functional use of language, fatigue among other things. I am wondering if this could be related to her having just come down with a cold? Or is it a sign that the Valtrex is not working? Or is it too soon to tell anything? We have been feeling pretty discouraged after this latest regression. We have had hope in so many other approaches and it is hard for us to keep hoping in this case when we are not seeing changes. Any thoughts.?? Kristy Nardini wrote: > My son, too, is one of those who is responding really well to the > protocol. He has been on it for 2.5 years, since age 3.5. I have found > that > the more I keep Dr. G in the loop, the better my son fares. I know this > sounds like a " duh " , but for a long time I feared reporting little things > because I was afraid of more meds, or med changes. However, I'm learning > that Dr. G only makes tweaks that ultimately help my son to be his best. > > Kristy > > From: <mailto:%40> > [mailto: <mailto:%40>] On > Behalf Of > Sent: Thursday, June 19, 2008 8:55 PM > <mailto:%40> > Subject: Re: Aggressive Behavior > > Marcia, > > Just like many other parents on this chat list, you have given OUR > family so much hope as well. Would you mind sharing with the group, > how long your son was on medication, or if he still is? My son will > be 5 next month and we have been seeing small but steady improvements > since we started seeing Dr. G 1 1/2 years ago. > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > so " justified " in the protocol. To all parents out there, hang > in there! About the time we start to question the protocol, within a > week or two, we see what we call a " burst " in awareness, social > behavior, speech and more. > > I realize every child is different, but I am thrilled with the > results so far! > > > > > > > May, > > > > We don't know each other but my son has been going to Dr. G since > he was almost 5. At that time I was told by the " experts " that he > would never be okay and would probably end up in an institution. He > was in the 3rd percentile for speech when he entered Kindergarten. > Most of what I did was so I wouldn't have guilt later when placement > might have to be considered. Thank god for guilt. > > > > > > > > He now is recovered, and attends a major university. They don't > know he ever had Autism and gave him a half ride. He has friends, > drives and does all the things the doctors said would never be > possible. After you help them physically you have to teach them > everything they missed. In the beginning we have to teach our kids > everything that other kids just learn on their own. That used to > make me so mad. We used ABA in the until he could learn like other > kids. But be careful many ABA providers are just there to take your > money and aren't really doing it correctly. > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > off which actually as weird as it sounds is a good thing. It means > your kid can get better. A die-off reaction is when the yeast or > virus is being killed off. It usually kicks up some severe reactions > before exiting the body. I know you are never going to believe this > because your child is acting so much more autistic, but it really is > great news. It means your child will be helped tremendously by the > meds. You probably feel like you are going backwards at this time, > and it is hard to know that you are doing the right thing. However, > when die-off is over, you will see a new kid. More focused and > alert. You will be amazed by the change in your child. So hang on. > After die-off it will be wonderful! The hyper,silly, aggressive and > drunken behavior start to go away. Now they can learn to stop > pinching or biting. (Or whatever the behavior is that your child > does. Behaviors that make you crazy now, will be possible to get rid > of with teaching.) > > > > > > To help with die-off, you can give your child some activated > charcoal (can get at the pharmacy without a prescription) to absorb > the yeast that is being killed off. But be careful when you give it, > because in addition to absorbing the yeast that is existing the body, > it will absorb medicines. So don't give it shortly after giving > meds. Die-off doesn't usually last more than a week but can be as > long as ten days. If it is really bad, call Dr. G. He may tell you > to either increase or decrease the dosage of the anti-fungal. > > > > > > Once I tried the pills myself just to see what die-off felt like. > You feel like PMS times twenty. During that time we didn't do any > thing complicated. We hung out and did things he found relaxing like > watching his favorite videos. It wasn't a time I would try to teach > my son anything new. They feel very sick. Tylenol every three and a > half hours helps. Hang in there. This short terrible time will > bring great things, > > It took years for our kids to be sick and it takes years to > recover. Even if > > you could wave a magic wand and make their bodies normal, you would > have to > > teach them everything they missed while they were sick. > > > > > > You don't wake up one morning and BAM they are better. It takes > time and it is usually ten steps forward and two steps back. When my > son was little, the hardest thing was to keep talking to this kid who > gave me no indication one way or another that he cared about anything > I said or did. You have to keep treating them like they are normal > even though they don't act normal. Don't change the world to make > their lives easier, make them change to fit in the world. Some good > advice I received from Maurice was to use everything they > like to motivate them. > > > > > > > > It is possible for our kids to be " normal " and lead happy > productive lives if they have parents that don't give up on them. > You know that kid is in there, you just have to make them come out > before they make you so mad you want to kill them. Hang in there and > don't give up on them no matter how much they try to make you. They > can get better. Call me if I can help. > > > > Marcia Hinds > > > > 805 497-8202 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Hi - First - you are washing off the blue dye, right? We didn't see drastic sudden changes on Valtrex, either. They were slow and subtle. (It was Diflucan and later Nizoral omg! that showed us drastic changes, although those weren't what helped the deepest source of the problems - chronic viral issues). Honestly, though, Valtrex wasn't the one for us ... after I'm guessing 6 months and not seeing the changes in the labs he wanted to see, we were switched to Famvir. Valtrex is usually first, then cycled to Famvir. You're going to be on both of the at some point (probably). I thought I saw improvement early on w/Famvir, but it was truly a year or more into it (w/steady improvements though) that I had my real " Oh My Gosh " moment when I noticed the most significant change to his eye contact, when his eyes first started leading his head. It was awesome but it took time to get there. If you see regression, it could very well be the " stirring up " of a virus. Things may tank before improving. But the timing of the cold is probably more significant. Anyway, early in the protocol, you will have so many swings back and forth that you'll drive yourself crazy if you overanalyze it. Every bad day we had, I fretted " Are they getting sick? Did something they eat trigger this? " .  Answer: probably. But there was nothing I could do about it but wait until a good long time on the meds and on low allergy diet and aggressive treatment of the frequent illnesses that were constantly hitting and setting them back finally began to show up and they stayed well longer, had fewer reactions, etc. Fortunately there were so many positive leaps forward along the way that I was able to stick to it and not doubt that what we were doing was helping. There are other tools than just the antivirals that will be involved. You cannot make an assessment of the benefits before a year is up. That is the average time it seems to take to really begin to overcome the dysfunction and move into the phase where things start to become more stable and consistent and move into recovery phase, and then that second year is REAL exciting - in our experience, and that of many others I've talked to over the years. There are parents who have been very dissappointed to not see improvements in their children. But very few that I know of. But I know some Moms have been 2 years into treatment and be devastated that they still haven't seen near the improvement they had dared to hope for, discuss stopping, decide to hang in some more, and eventually finally get significant improvements long after they had given up hope. They stuck with it because they could tell that their children were healthier on the meds, but didn't see the behavioral cognitive improvements they had hoped ... until much later. It is so unpredictable, and not every child gets the same benefit ... just like in CFIDS, sadly. However, it is WAYYY to early for you to be worrying about that.  A month is a blink of the eye after years of illness. And there are other things being studied in CFIDS that are going to help our children too. So just doing whatever we can to keep their bodies as healthy as we can is still doing something valuable. HTH-hang in there! Re: Aggressive Behavior > > Marcia, > > Just like many other parents on this chat list, you have given OUR > family so much hope as well. Would you mind sharing with the group, > how long your son was on medication, or if he still is? My son will > be 5 next month and we have been seeing small but steady improvements > since we started seeing Dr. G 1 1/2 years ago. > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > so " justified " in the protocol. To all parents out there, hang > in there! About the time we start to question the protocol, within a > week or two, we see what we call a " burst " in awareness, social > behavior, speech and more. > > I realize every child is different, but I am thrilled with the > results so far! > > > > > > > May, > > > > We don't know each other but my son has been going to Dr. G since > he was almost 5. At that time I was told by the " experts " that he > would never be okay and would probably end up in an institution. He > was in the 3rd percentile for speech when he entered Kindergarten. > Most of what I did was so I wouldn't have guilt later when placement > might have to be considered. Thank god for guilt. > > > > > > > > He now is recovered, and attends a major university. They don't > know he ever had Autism and gave him a half ride. He has friends, > drives and does all the things the doctors said would never be > possible. After you help them physically you have to teach them > everything they missed. In the beginning we have to teach our kids > everything that other kids just learn on their own. That used to > make me so mad. We used ABA in the until he could learn like other > kids. But be careful many ABA providers are just there to take your > money and aren't really doing it correctly. > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > off which actually as weird as it sounds is a good thing. It means > your kid can get better. A die-off reaction is when the yeast or > virus is being killed off. It usually kicks up some severe reactions > before exiting the body. I know you are never going to believe this > because your child is acting so much more autistic, but it really is > great news. It means your child will be helped tremendously by the > meds. You probably feel like you are going backwards at this time, > and it is hard to know that you are doing the right thing. However, > when die-off is over, you will see a new kid. More focused and > alert. You will be amazed by the change in your child. So hang on. > After die-off it will be wonderful! The hyper,silly, aggressive and > drunken behavior start to go away. Now they can learn to stop > pinching or biting. (Or whatever the behavior is that your child > does. Behaviors that make you crazy now, will be possible to get rid > of with teaching.) > > > > > > To help with die-off, you can give your child some activated > charcoal (can get at the pharmacy without a prescription) to absorb > the yeast that is being killed off. But be careful when you give it, > because in addition to absorbing the yeast that is existing the body, > it will absorb medicines. So don't give it shortly after giving > meds. Die-off doesn't usually last more than a week but can be as > long as ten days. If it is really bad, call Dr. G. He may tell you > to either increase or decrease the dosage of the anti-fungal. > > > > > > Once I tried the pills myself just to see what die-off felt like. > You feel like PMS times twenty. During that time we didn't do any > thing complicated. We hung out and did things he found relaxing like > watching his favorite videos. It wasn't a time I would try to teach > my son anything new. They feel very sick. Tylenol every three and a > half hours helps. Hang in there. This short terrible time will > bring great things, > > It took years for our kids to be sick and it takes years to > recover. Even if > > you could wave a magic wand and make their bodies normal, you would > have to > > teach them everything they missed while they were sick. > > > > > > You don't wake up one morning and BAM they are better. It takes > time and it is usually ten steps forward and two steps back. When my > son was little, the hardest thing was to keep talking to this kid who > gave me no indication one way or another that he cared about anything > I said or did. You have to keep treating them like they are normal > even though they don't act normal. Don't change the world to make > their lives easier, make them change to fit in the world. Some good > advice I received from Maurice was to use everything they > like to motivate them. > > > > > > > > It is possible for our kids to be " normal " and lead happy > productive lives if they have parents that don't give up on them. > You know that kid is in there, you just have to make them come out > before they make you so mad you want to kill them. Hang in there and > don't give up on them no matter how much they try to make you. They > can get better. Call me if I can help. > > > > Marcia Hinds > > > > 805 497-8202 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Great response, , and one every newcomer to the protocol should read. It really helps! As my husband always tells me, slow and steady wins the race. It's hard to remember this when we want to see our kids improve rapidly. Have a great weekend. Robyn <thecolemans4@...> wrote: Hi - First - you are washing off the blue dye, right? We didn't see drastic sudden changes on Valtrex, either. They were slow and subtle. (It was Diflucan and later Nizoral omg! that showed us drastic changes, although those weren't what helped the deepest source of the problems - chronic viral issues). Honestly, though, Valtrex wasn't the one for us ... after I'm guessing 6 months and not seeing the changes in the labs he wanted to see, we were switched to Famvir. Valtrex is usually first, then cycled to Famvir. You're going to be on both of the at some point (probably). I thought I saw improvement early on w/Famvir, but it was truly a year or more into it (w/steady improvements though) that I had my real " Oh My Gosh " moment when I noticed the most significant change to his eye contact, when his eyes first started leading his head. It was awesome but it took time to get there. If you see regression, it could very well be the " stirring up " of a virus. Things may tank before improving. But the timing of the cold is probably more significant. Anyway, early in the protocol, you will have so many swings back and forth that you'll drive yourself crazy if you overanalyze it. Every bad day we had, I fretted " Are they getting sick? Did something they eat trigger this? " . Answer: probably. But there was nothing I could do about it but wait until a good long time on the meds and on low allergy diet and aggressive treatment of the frequent illnesses that were constantly hitting and setting them back finally began to show up and they stayed well longer, had fewer reactions, etc. Fortunately there were so many positive leaps forward along the way that I was able to stick to it and not doubt that what we were doing was helping. There are other tools than just the antivirals that will be involved. You cannot make an assessment of the benefits before a year is up. That is the average time it seems to take to really begin to overcome the dysfunction and move into the phase where things start to become more stable and consistent and move into recovery phase, and then that second year is REAL exciting - in our experience, and that of many others I've talked to over the years. There are parents who have been very dissappointed to not see improvements in their children. But very few that I know of. But I know some Moms have been 2 years into treatment and be devastated that they still haven't seen near the improvement they had dared to hope for, discuss stopping, decide to hang in some more, and eventually finally get significant improvements long after they had given up hope. They stuck with it because they could tell that their children were healthier on the meds, but didn't see the behavioral cognitive improvements they had hoped ... until much later. It is so unpredictable, and not every child gets the same benefit ... just like in CFIDS, sadly. However, it is WAYYY to early for you to be worrying about that. A month is a blink of the eye after years of illness. And there are other things being studied in CFIDS that are going to help our children too. So just doing whatever we can to keep their bodies as healthy as we can is still doing something valuable. HTH-hang in there! Re: Aggressive Behavior > > Marcia, > > Just like many other parents on this chat list, you have given OUR > family so much hope as well. Would you mind sharing with the group, > how long your son was on medication, or if he still is? My son will > be 5 next month and we have been seeing small but steady improvements > since we started seeing Dr. G 1 1/2 years ago. > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > so " justified " in the protocol. To all parents out there, hang > in there! About the time we start to question the protocol, within a > week or two, we see what we call a " burst " in awareness, social > behavior, speech and more. > > I realize every child is different, but I am thrilled with the > results so far! > > > > > > > May, > > > > We don't know each other but my son has been going to Dr. G since > he was almost 5. At that time I was told by the " experts " that he > would never be okay and would probably end up in an institution. He > was in the 3rd percentile for speech when he entered Kindergarten. > Most of what I did was so I wouldn't have guilt later when placement > might have to be considered. Thank god for guilt. > > > > > > > > He now is recovered, and attends a major university. They don't > know he ever had Autism and gave him a half ride. He has friends, > drives and does all the things the doctors said would never be > possible. After you help them physically you have to teach them > everything they missed. In the beginning we have to teach our kids > everything that other kids just learn on their own. That used to > make me so mad. We used ABA in the until he could learn like other > kids. But be careful many ABA providers are just there to take your > money and aren't really doing it correctly. > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > off which actually as weird as it sounds is a good thing. It means > your kid can get better. A die-off reaction is when the yeast or > virus is being killed off. It usually kicks up some severe reactions > before exiting the body. I know you are never going to believe this > because your child is acting so much more autistic, but it really is > great news. It means your child will be helped tremendously by the > meds. You probably feel like you are going backwards at this time, > and it is hard to know that you are doing the right thing. However, > when die-off is over, you will see a new kid. More focused and > alert. You will be amazed by the change in your child. So hang on. > After die-off it will be wonderful! The hyper,silly, aggressive and > drunken behavior start to go away. Now they can learn to stop > pinching or biting. (Or whatever the behavior is that your child > does. Behaviors that make you crazy now, will be possible to get rid > of with teaching.) > > > > > > To help with die-off, you can give your child some activated > charcoal (can get at the pharmacy without a prescription) to absorb > the yeast that is being killed off. But be careful when you give it, > because in addition to absorbing the yeast that is existing the body, > it will absorb medicines. So don't give it shortly after giving > meds. Die-off doesn't usually last more than a week but can be as > long as ten days. If it is really bad, call Dr. G. He may tell you > to either increase or decrease the dosage of the anti-fungal. > > > > > > Once I tried the pills myself just to see what die-off felt like. > You feel like PMS times twenty. During that time we didn't do any > thing complicated. We hung out and did things he found relaxing like > watching his favorite videos. It wasn't a time I would try to teach > my son anything new. They feel very sick. Tylenol every three and a > half hours helps. Hang in there. This short terrible time will > bring great things, > > It took years for our kids to be sick and it takes years to > recover. Even if > > you could wave a magic wand and make their bodies normal, you would > have to > > teach them everything they missed while they were sick. > > > > > > You don't wake up one morning and BAM they are better. It takes > time and it is usually ten steps forward and two steps back. When my > son was little, the hardest thing was to keep talking to this kid who > gave me no indication one way or another that he cared about anything > I said or did. You have to keep treating them like they are normal > even though they don't act normal. Don't change the world to make > their lives easier, make them change to fit in the world. Some good > advice I received from Maurice was to use everything they > like to motivate them. > > > > > > > > It is possible for our kids to be " normal " and lead happy > productive lives if they have parents that don't give up on them. > You know that kid is in there, you just have to make them come out > before they make you so mad you want to kill them. Hang in there and > don't give up on them no matter how much they try to make you. They > can get better. Call me if I can help. > > > > Marcia Hinds > > > > 805 497-8202 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 , I agree with Robyn. This is a great response. And thank you to everyone who responded. You should save it to send to other newcomers who are struggling with the beginning of this process!! It was just what I needed to hear to start to back off on my over-analysis of all of our daughter's ups and downs. Ups and downs are the major signature of our daughter's development to this point, one step forward, two steps back. It has made it hard to believe in any gains she is making though there have been some subtle ones since she went on the Valtrex. It makes sense that it may be a long gradual process for her. Robyn & Greg Coggins wrote: > Great response, , and one every newcomer to the protocol should > read. It really helps! As my husband always tells me, slow and steady > wins the race. It's hard to remember this when we want to see our kids > improve rapidly. > > Have a great weekend. > > Robyn > > <thecolemans4@... > <mailto:thecolemans4%40>> wrote: > Hi - > First - you are washing off the blue dye, right? > We didn't see drastic sudden changes on Valtrex, either. They were > slow and subtle. (It was Diflucan and later Nizoral omg! that showed > us drastic changes, although those weren't what helped the deepest > source of the problems - chronic viral issues). > Honestly, though, Valtrex wasn't the one for us ... after I'm guessing > 6 months and not seeing the changes in the labs he wanted to see, we > were switched to Famvir. Valtrex is usually first, then cycled to > Famvir. You're going to be on both of the at some point (probably). I > thought I saw improvement early on w/Famvir, but it was truly a year > or more into it (w/steady improvements though) that I had my real " Oh > My Gosh " moment when I noticed the most significant change to his eye > contact, when his eyes first started leading his head. It was awesome > but it took time to get there. > If you see regression, it could very well be the " stirring up " of a > virus. Things may tank before improving. But the timing of the cold is > probably more significant. Anyway, early in the protocol, you will > have so many swings back and forth that you'll drive yourself crazy if > you overanalyze it. Every bad day we had, I fretted " Are they getting > sick? Did something they eat trigger this? " . Answer: probably. But > there was nothing I could do about it but wait until a good long time > on the meds and on low allergy diet and aggressive treatment of the > frequent illnesses that were constantly hitting and setting them back > finally began to show up and they stayed well longer, had fewer > reactions, etc. Fortunately there were so many positive leaps forward > along the way that I was able to stick to it and not doubt that what > we were doing was helping. > There are other tools than just the antivirals that will be involved. > You cannot make an assessment of the benefits before a year is up. > That is the average time it seems to take to really begin to overcome > the dysfunction and move into the phase where things start to become > more stable and consistent and move into recovery phase, and then that > second year is REAL exciting - in our experience, and that of many > others I've talked to over the years. > There are parents who have been very dissappointed to not see > improvements in their children. But very few that I know of. But I > know some Moms have been 2 years into treatment and be devastated that > they still haven't seen near the improvement they had dared to hope > for, discuss stopping, decide to hang in some more, and eventually > finally get significant improvements long after they had given up > hope. They stuck with it because they could tell that their children > were healthier on the meds, but didn't see the behavioral cognitive > improvements they had hoped ... until much later. It is so > unpredictable, and not every child gets the same benefit ... just like > in CFIDS, sadly. However, it is WAYYY to early for you to be worrying > about that. A month is a blink of the eye after years of illness. > And there are other things being studied in CFIDS that are going to > help our children too. So just doing whatever we can to keep their > bodies as healthy as we can is still doing something valuable. > HTH-hang in there! > > > Re: Aggressive Behavior > > > > Marcia, > > > > Just like many other parents on this chat list, you have given OUR > > family so much hope as well. Would you mind sharing with the group, > > how long your son was on medication, or if he still is? My son will > > be 5 next month and we have been seeing small but steady improvements > > since we started seeing Dr. G 1 1/2 years ago. > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > so " justified " in the protocol. To all parents out there, hang > > in there! About the time we start to question the protocol, within a > > week or two, we see what we call a " burst " in awareness, social > > behavior, speech and more. > > > > I realize every child is different, but I am thrilled with the > > results so far! > > > > > > > > > > > > May, > > > > > > We don't know each other but my son has been going to Dr. G since > > he was almost 5. At that time I was told by the " experts " that he > > would never be okay and would probably end up in an institution. He > > was in the 3rd percentile for speech when he entered Kindergarten. > > Most of what I did was so I wouldn't have guilt later when placement > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > know he ever had Autism and gave him a half ride. He has friends, > > drives and does all the things the doctors said would never be > > possible. After you help them physically you have to teach them > > everything they missed. In the beginning we have to teach our kids > > everything that other kids just learn on their own. That used to > > make me so mad. We used ABA in the until he could learn like other > > kids. But be careful many ABA providers are just there to take your > > money and aren't really doing it correctly. > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > off which actually as weird as it sounds is a good thing. It means > > your kid can get better. A die-off reaction is when the yeast or > > virus is being killed off. It usually kicks up some severe reactions > > before exiting the body. I know you are never going to believe this > > because your child is acting so much more autistic, but it really is > > great news. It means your child will be helped tremendously by the > > meds. You probably feel like you are going backwards at this time, > > and it is hard to know that you are doing the right thing. However, > > when die-off is over, you will see a new kid. More focused and > > alert. You will be amazed by the change in your child. So hang on. > > After die-off it will be wonderful! The hyper,silly, aggressive and > > drunken behavior start to go away. Now they can learn to stop > > pinching or biting. (Or whatever the behavior is that your child > > does. Behaviors that make you crazy now, will be possible to get rid > > of with teaching.) > > > > > > > > > To help with die-off, you can give your child some activated > > charcoal (can get at the pharmacy without a prescription) to absorb > > the yeast that is being killed off. But be careful when you give it, > > because in addition to absorbing the yeast that is existing the body, > > it will absorb medicines. So don't give it shortly after giving > > meds. Die-off doesn't usually last more than a week but can be as > > long as ten days. If it is really bad, call Dr. G. He may tell you > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > You feel like PMS times twenty. During that time we didn't do any > > thing complicated. We hung out and did things he found relaxing like > > watching his favorite videos. It wasn't a time I would try to teach > > my son anything new. They feel very sick. Tylenol every three and a > > half hours helps. Hang in there. This short terrible time will > > bring great things, > > > It took years for our kids to be sick and it takes years to > > recover. Even if > > > you could wave a magic wand and make their bodies normal, you would > > have to > > > teach them everything they missed while they were sick. > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > time and it is usually ten steps forward and two steps back. When my > > son was little, the hardest thing was to keep talking to this kid who > > gave me no indication one way or another that he cared about anything > > I said or did. You have to keep treating them like they are normal > > even though they don't act normal. Don't change the world to make > > their lives easier, make them change to fit in the world. Some good > > advice I received from Maurice was to use everything they > > like to motivate them. > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > productive lives if they have parents that don't give up on them. > > You know that kid is in there, you just have to make them come out > > before they make you so mad you want to kill them. Hang in there and > > don't give up on them no matter how much they try to make you. They > > can get better. Call me if I can help. > > > > > > Marcia Hinds > > > > > > 805 497-8202 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 We started with Dr. G in late January. My son has always been a one step forward, two steps back kind of kid (I used the song by that name just to contain my frustration). We would have endless meetings with school personnel and therapists to discuss issues of consistency, etc. Finally, with Dr. G, we're getting more consistently positive reports from most everyone in his life. Nothing drastic, nothing ear shattering--less regression and a little more progression. It's great, and I'm confident you will see these changes as well. All the best, Robyn Caroline <carrieps@...> wrote: , I agree with Robyn. This is a great response. And thank you to everyone who responded. You should save it to send to other newcomers who are struggling with the beginning of this process!! It was just what I needed to hear to start to back off on my over-analysis of all of our daughter's ups and downs. Ups and downs are the major signature of our daughter's development to this point, one step forward, two steps back. It has made it hard to believe in any gains she is making though there have been some subtle ones since she went on the Valtrex. It makes sense that it may be a long gradual process for her. Robyn & Greg Coggins wrote: > Great response, , and one every newcomer to the protocol should > read. It really helps! As my husband always tells me, slow and steady > wins the race. It's hard to remember this when we want to see our kids > improve rapidly. > > Have a great weekend. > > Robyn > > <thecolemans4@... > <mailto:thecolemans4%40>> wrote: > Hi - > First - you are washing off the blue dye, right? > We didn't see drastic sudden changes on Valtrex, either. They were > slow and subtle. (It was Diflucan and later Nizoral omg! that showed > us drastic changes, although those weren't what helped the deepest > source of the problems - chronic viral issues). > Honestly, though, Valtrex wasn't the one for us ... after I'm guessing > 6 months and not seeing the changes in the labs he wanted to see, we > were switched to Famvir. Valtrex is usually first, then cycled to > Famvir. You're going to be on both of the at some point (probably). I > thought I saw improvement early on w/Famvir, but it was truly a year > or more into it (w/steady improvements though) that I had my real " Oh > My Gosh " moment when I noticed the most significant change to his eye > contact, when his eyes first started leading his head. It was awesome > but it took time to get there. > If you see regression, it could very well be the " stirring up " of a > virus. Things may tank before improving. But the timing of the cold is > probably more significant. Anyway, early in the protocol, you will > have so many swings back and forth that you'll drive yourself crazy if > you overanalyze it. Every bad day we had, I fretted " Are they getting > sick? Did something they eat trigger this? " . Answer: probably. But > there was nothing I could do about it but wait until a good long time > on the meds and on low allergy diet and aggressive treatment of the > frequent illnesses that were constantly hitting and setting them back > finally began to show up and they stayed well longer, had fewer > reactions, etc. Fortunately there were so many positive leaps forward > along the way that I was able to stick to it and not doubt that what > we were doing was helping. > There are other tools than just the antivirals that will be involved. > You cannot make an assessment of the benefits before a year is up. > That is the average time it seems to take to really begin to overcome > the dysfunction and move into the phase where things start to become > more stable and consistent and move into recovery phase, and then that > second year is REAL exciting - in our experience, and that of many > others I've talked to over the years. > There are parents who have been very dissappointed to not see > improvements in their children. But very few that I know of. But I > know some Moms have been 2 years into treatment and be devastated that > they still haven't seen near the improvement they had dared to hope > for, discuss stopping, decide to hang in some more, and eventually > finally get significant improvements long after they had given up > hope. They stuck with it because they could tell that their children > were healthier on the meds, but didn't see the behavioral cognitive > improvements they had hoped ... until much later. It is so > unpredictable, and not every child gets the same benefit ... just like > in CFIDS, sadly. However, it is WAYYY to early for you to be worrying > about that. A month is a blink of the eye after years of illness. > And there are other things being studied in CFIDS that are going to > help our children too. So just doing whatever we can to keep their > bodies as healthy as we can is still doing something valuable. > HTH-hang in there! > > > Re: Aggressive Behavior > > > > Marcia, > > > > Just like many other parents on this chat list, you have given OUR > > family so much hope as well. Would you mind sharing with the group, > > how long your son was on medication, or if he still is? My son will > > be 5 next month and we have been seeing small but steady improvements > > since we started seeing Dr. G 1 1/2 years ago. > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > so " justified " in the protocol. To all parents out there, hang > > in there! About the time we start to question the protocol, within a > > week or two, we see what we call a " burst " in awareness, social > > behavior, speech and more. > > > > I realize every child is different, but I am thrilled with the > > results so far! > > > > > > > > > > > > May, > > > > > > We don't know each other but my son has been going to Dr. G since > > he was almost 5. At that time I was told by the " experts " that he > > would never be okay and would probably end up in an institution. He > > was in the 3rd percentile for speech when he entered Kindergarten. > > Most of what I did was so I wouldn't have guilt later when placement > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > know he ever had Autism and gave him a half ride. He has friends, > > drives and does all the things the doctors said would never be > > possible. After you help them physically you have to teach them > > everything they missed. In the beginning we have to teach our kids > > everything that other kids just learn on their own. That used to > > make me so mad. We used ABA in the until he could learn like other > > kids. But be careful many ABA providers are just there to take your > > money and aren't really doing it correctly. > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > off which actually as weird as it sounds is a good thing. It means > > your kid can get better. A die-off reaction is when the yeast or > > virus is being killed off. It usually kicks up some severe reactions > > before exiting the body. I know you are never going to believe this > > because your child is acting so much more autistic, but it really is > > great news. It means your child will be helped tremendously by the > > meds. You probably feel like you are going backwards at this time, > > and it is hard to know that you are doing the right thing. However, > > when die-off is over, you will see a new kid. More focused and > > alert. You will be amazed by the change in your child. So hang on. > > After die-off it will be wonderful! The hyper,silly, aggressive and > > drunken behavior start to go away. Now they can learn to stop > > pinching or biting. (Or whatever the behavior is that your child > > does. Behaviors that make you crazy now, will be possible to get rid > > of with teaching.) > > > > > > > > > To help with die-off, you can give your child some activated > > charcoal (can get at the pharmacy without a prescription) to absorb > > the yeast that is being killed off. But be careful when you give it, > > because in addition to absorbing the yeast that is existing the body, > > it will absorb medicines. So don't give it shortly after giving > > meds. Die-off doesn't usually last more than a week but can be as > > long as ten days. If it is really bad, call Dr. G. He may tell you > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > You feel like PMS times twenty. During that time we didn't do any > > thing complicated. We hung out and did things he found relaxing like > > watching his favorite videos. It wasn't a time I would try to teach > > my son anything new. They feel very sick. Tylenol every three and a > > half hours helps. Hang in there. This short terrible time will > > bring great things, > > > It took years for our kids to be sick and it takes years to > > recover. Even if > > > you could wave a magic wand and make their bodies normal, you would > > have to > > > teach them everything they missed while they were sick. > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > time and it is usually ten steps forward and two steps back. When my > > son was little, the hardest thing was to keep talking to this kid who > > gave me no indication one way or another that he cared about anything > > I said or did. You have to keep treating them like they are normal > > even though they don't act normal. Don't change the world to make > > their lives easier, make them change to fit in the world. Some good > > advice I received from Maurice was to use everything they > > like to motivate them. > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > productive lives if they have parents that don't give up on them. > > You know that kid is in there, you just have to make them come out > > before they make you so mad you want to kill them. Hang in there and > > don't give up on them no matter how much they try to make you. They > > can get better. Call me if I can help. > > > > > > Marcia Hinds > > > > > > 805 497-8202 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Thank you, Robyn. My greatest hope is that her therapists and school personnel will see some progress. Our meetings with them for the past couple years have been very discouraging. Robyn & Greg Coggins wrote: > We started with Dr. G in late January. My son has always been a one > step forward, two steps back kind of kid (I used the song by that name > just to contain my frustration). We would have endless meetings with > school personnel and therapists to discuss issues of consistency, etc. > Finally, with Dr. G, we're getting more consistently positive reports > from most everyone in his life. Nothing drastic, nothing ear > shattering--less regression and a little more progression. It's great, > and I'm confident you will see these changes as well. > > All the best, > > Robyn > > Caroline <carrieps@... <mailto:carrieps%40pobox.com>> wrote: > , > > I agree with Robyn. This is a great response. And thank you to > everyone who responded. You should save it to send to other newcomers > who are struggling with the beginning of this process!! It was just > what I needed to hear to start to back off on my over-analysis of all of > our daughter's ups and downs. > > Ups and downs are the major signature of our daughter's development to > this point, one step forward, two steps back. It has made it hard to > believe in any gains she is making though there have been some subtle > ones since she went on the Valtrex. It makes sense that it may be a > long gradual process for her. > > > > Robyn & Greg Coggins wrote: > > > Great response, , and one every newcomer to the protocol should > > read. It really helps! As my husband always tells me, slow and steady > > wins the race. It's hard to remember this when we want to see our kids > > improve rapidly. > > > > Have a great weekend. > > > > Robyn > > > > <thecolemans4@... > <mailto:thecolemans4%40> > > <mailto:thecolemans4%40>> wrote: > > Hi - > > First - you are washing off the blue dye, right? > > We didn't see drastic sudden changes on Valtrex, either. They were > > slow and subtle. (It was Diflucan and later Nizoral omg! that showed > > us drastic changes, although those weren't what helped the deepest > > source of the problems - chronic viral issues). > > Honestly, though, Valtrex wasn't the one for us ... after I'm guessing > > 6 months and not seeing the changes in the labs he wanted to see, we > > were switched to Famvir. Valtrex is usually first, then cycled to > > Famvir. You're going to be on both of the at some point (probably). I > > thought I saw improvement early on w/Famvir, but it was truly a year > > or more into it (w/steady improvements though) that I had my real " Oh > > My Gosh " moment when I noticed the most significant change to his eye > > contact, when his eyes first started leading his head. It was awesome > > but it took time to get there. > > If you see regression, it could very well be the " stirring up " of a > > virus. Things may tank before improving. But the timing of the cold is > > probably more significant. Anyway, early in the protocol, you will > > have so many swings back and forth that you'll drive yourself crazy if > > you overanalyze it. Every bad day we had, I fretted " Are they getting > > sick? Did something they eat trigger this? " . Answer: probably. But > > there was nothing I could do about it but wait until a good long time > > on the meds and on low allergy diet and aggressive treatment of the > > frequent illnesses that were constantly hitting and setting them back > > finally began to show up and they stayed well longer, had fewer > > reactions, etc. Fortunately there were so many positive leaps forward > > along the way that I was able to stick to it and not doubt that what > > we were doing was helping. > > There are other tools than just the antivirals that will be involved. > > You cannot make an assessment of the benefits before a year is up. > > That is the average time it seems to take to really begin to overcome > > the dysfunction and move into the phase where things start to become > > more stable and consistent and move into recovery phase, and then that > > second year is REAL exciting - in our experience, and that of many > > others I've talked to over the years. > > There are parents who have been very dissappointed to not see > > improvements in their children. But very few that I know of. But I > > know some Moms have been 2 years into treatment and be devastated that > > they still haven't seen near the improvement they had dared to hope > > for, discuss stopping, decide to hang in some more, and eventually > > finally get significant improvements long after they had given up > > hope. They stuck with it because they could tell that their children > > were healthier on the meds, but didn't see the behavioral cognitive > > improvements they had hoped ... until much later. It is so > > unpredictable, and not every child gets the same benefit ... just like > > in CFIDS, sadly. However, it is WAYYY to early for you to be worrying > > about that. A month is a blink of the eye after years of illness. > > And there are other things being studied in CFIDS that are going to > > help our children too. So just doing whatever we can to keep their > > bodies as healthy as we can is still doing something valuable. > > HTH-hang in there! > > > > > > Re: Aggressive Behavior > > > > > > Marcia, > > > > > > Just like many other parents on this chat list, you have given OUR > > > family so much hope as well. Would you mind sharing with the group, > > > how long your son was on medication, or if he still is? My son will > > > be 5 next month and we have been seeing small but steady improvements > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > > so " justified " in the protocol. To all parents out there, hang > > > in there! About the time we start to question the protocol, within a > > > week or two, we see what we call a " burst " in awareness, social > > > behavior, speech and more. > > > > > > I realize every child is different, but I am thrilled with the > > > results so far! > > > > > > > > > > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe reactions > > > before exiting the body. I know you are never going to believe this > > > because your child is acting so much more autistic, but it really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to absorb > > > the yeast that is being killed off. But be careful when you give it, > > > because in addition to absorbing the yeast that is existing the body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing like > > > watching his favorite videos. It wasn't a time I would try to teach > > > my son anything new. They feel very sick. Tylenol every three and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. When my > > > son was little, the hardest thing was to keep talking to this kid who > > > gave me no indication one way or another that he cared about anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some good > > > advice I received from Maurice was to use everything they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there and > > > don't give up on them no matter how much they try to make you. They > > > can get better. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 In the IEP we just had for Noah, I received the best feedback ever. Our speech therapist is still negative but that's more of a personality issue, LOL. Noah has made tremendous progress in social interaction this year. Truly amazing, actually. He's gone from prefering solitary play or self stimulation to actually participating in games organized by his aide and requesting group activities. Academically, not as much progress, but when we see gains in one area, we usually don't see them in others. Take care, Robyn Caroline <carrieps@...> wrote: Thank you, Robyn. My greatest hope is that her therapists and school personnel will see some progress. Our meetings with them for the past couple years have been very discouraging. Robyn & Greg Coggins wrote: > We started with Dr. G in late January. My son has always been a one > step forward, two steps back kind of kid (I used the song by that name > just to contain my frustration). We would have endless meetings with > school personnel and therapists to discuss issues of consistency, etc. > Finally, with Dr. G, we're getting more consistently positive reports > from most everyone in his life. Nothing drastic, nothing ear > shattering--less regression and a little more progression. It's great, > and I'm confident you will see these changes as well. > > All the best, > > Robyn > > Caroline <carrieps@... <mailto:carrieps%40pobox.com>> wrote: > , > > I agree with Robyn. This is a great response. And thank you to > everyone who responded. You should save it to send to other newcomers > who are struggling with the beginning of this process!! It was just > what I needed to hear to start to back off on my over-analysis of all of > our daughter's ups and downs. > > Ups and downs are the major signature of our daughter's development to > this point, one step forward, two steps back. It has made it hard to > believe in any gains she is making though there have been some subtle > ones since she went on the Valtrex. It makes sense that it may be a > long gradual process for her. > > > > Robyn & Greg Coggins wrote: > > > Great response, , and one every newcomer to the protocol should > > read. It really helps! As my husband always tells me, slow and steady > > wins the race. It's hard to remember this when we want to see our kids > > improve rapidly. > > > > Have a great weekend. > > > > Robyn > > > > <thecolemans4@... > <mailto:thecolemans4%40> > > <mailto:thecolemans4%40>> wrote: > > Hi - > > First - you are washing off the blue dye, right? > > We didn't see drastic sudden changes on Valtrex, either. They were > > slow and subtle. (It was Diflucan and later Nizoral omg! that showed > > us drastic changes, although those weren't what helped the deepest > > source of the problems - chronic viral issues). > > Honestly, though, Valtrex wasn't the one for us ... after I'm guessing > > 6 months and not seeing the changes in the labs he wanted to see, we > > were switched to Famvir. Valtrex is usually first, then cycled to > > Famvir. You're going to be on both of the at some point (probably). I > > thought I saw improvement early on w/Famvir, but it was truly a year > > or more into it (w/steady improvements though) that I had my real " Oh > > My Gosh " moment when I noticed the most significant change to his eye > > contact, when his eyes first started leading his head. It was awesome > > but it took time to get there. > > If you see regression, it could very well be the " stirring up " of a > > virus. Things may tank before improving. But the timing of the cold is > > probably more significant. Anyway, early in the protocol, you will > > have so many swings back and forth that you'll drive yourself crazy if > > you overanalyze it. Every bad day we had, I fretted " Are they getting > > sick? Did something they eat trigger this? " . Answer: probably. But > > there was nothing I could do about it but wait until a good long time > > on the meds and on low allergy diet and aggressive treatment of the > > frequent illnesses that were constantly hitting and setting them back > > finally began to show up and they stayed well longer, had fewer > > reactions, etc. Fortunately there were so many positive leaps forward > > along the way that I was able to stick to it and not doubt that what > > we were doing was helping. > > There are other tools than just the antivirals that will be involved. > > You cannot make an assessment of the benefits before a year is up. > > That is the average time it seems to take to really begin to overcome > > the dysfunction and move into the phase where things start to become > > more stable and consistent and move into recovery phase, and then that > > second year is REAL exciting - in our experience, and that of many > > others I've talked to over the years. > > There are parents who have been very dissappointed to not see > > improvements in their children. But very few that I know of. But I > > know some Moms have been 2 years into treatment and be devastated that > > they still haven't seen near the improvement they had dared to hope > > for, discuss stopping, decide to hang in some more, and eventually > > finally get significant improvements long after they had given up > > hope. They stuck with it because they could tell that their children > > were healthier on the meds, but didn't see the behavioral cognitive > > improvements they had hoped ... until much later. It is so > > unpredictable, and not every child gets the same benefit ... just like > > in CFIDS, sadly. However, it is WAYYY to early for you to be worrying > > about that. A month is a blink of the eye after years of illness. > > And there are other things being studied in CFIDS that are going to > > help our children too. So just doing whatever we can to keep their > > bodies as healthy as we can is still doing something valuable. > > HTH-hang in there! > > > > > > Re: Aggressive Behavior > > > > > > Marcia, > > > > > > Just like many other parents on this chat list, you have given OUR > > > family so much hope as well. Would you mind sharing with the group, > > > how long your son was on medication, or if he still is? My son will > > > be 5 next month and we have been seeing small but steady improvements > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > > so " justified " in the protocol. To all parents out there, hang > > > in there! About the time we start to question the protocol, within a > > > week or two, we see what we call a " burst " in awareness, social > > > behavior, speech and more. > > > > > > I realize every child is different, but I am thrilled with the > > > results so far! > > > > > > > > > > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe reactions > > > before exiting the body. I know you are never going to believe this > > > because your child is acting so much more autistic, but it really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to absorb > > > the yeast that is being killed off. But be careful when you give it, > > > because in addition to absorbing the yeast that is existing the body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing like > > > watching his favorite videos. It wasn't a time I would try to teach > > > my son anything new. They feel very sick. Tylenol every three and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. When my > > > son was little, the hardest thing was to keep talking to this kid who > > > gave me no indication one way or another that he cared about anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some good > > > advice I received from Maurice was to use everything they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there and > > > don't give up on them no matter how much they try to make you. They > > > can get better. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 I'm glad it helps. If I could divert the energy I spend worrying to something more useful, oh what I could I possibly accomplish!   Day after day I have to remind myself to focus on the things that I CAN impact and shift my focus away from obsessing over what I can't control. Hard to do, sometimes, w/ OCD and anxiety, but the effort is worth it. If I had had a looking glass into the future about 5 years ago, I'd have saved myself a lot of suffering, and I guarantee we'd be even further ahead now. Re: Aggressive Behavior > > > > Marcia, > > > > Just like many other parents on this chat list, you have given OUR > > family so much hope as well. Would you mind sharing with the group, > > how long your son was on medication, or if he still is? My son will > > be 5 next month and we have been seeing small but steady improvements > > since we started seeing Dr. G 1 1/2 years ago. > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > so " justified " in the protocol. To all parents out there, hang > > in there! About the time we start to question the protocol, within a > > week or two, we see what we call a " burst " in awareness, social > > behavior, speech and more. > > > > I realize every child is different, but I am thrilled with the > > results so far! > > > > > > > > > > > > May, > > > > > > We don't know each other but my son has been going to Dr. G since > > he was almost 5. At that time I was told by the " experts " that he > > would never be okay and would probably end up in an institution. He > > was in the 3rd percentile for speech when he entered Kindergarten. > > Most of what I did was so I wouldn't have guilt later when placement > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > know he ever had Autism and gave him a half ride. He has friends, > > drives and does all the things the doctors said would never be > > possible. After you help them physically you have to teach them > > everything they missed. In the beginning we have to teach our kids > > everything that other kids just learn on their own. That used to > > make me so mad. We used ABA in the until he could learn like other > > kids. But be careful many ABA providers are just there to take your > > money and aren't really doing it correctly. > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > off which actually as weird as it sounds is a good thing. It means > > your kid can get better. A die-off reaction is when the yeast or > > virus is being killed off. It usually kicks up some severe reactions > > before exiting the body. I know you are never going to believe this > > because your child is acting so much more autistic, but it really is > > great news. It means your child will be helped tremendously by the > > meds. You probably feel like you are going backwards at this time, > > and it is hard to know that you are doing the right thing. However, > > when die-off is over, you will see a new kid. More focused and > > alert. You will be amazed by the change in your child. So hang on. > > After die-off it will be wonderful! The hyper,silly, aggressive and > > drunken behavior start to go away. Now they can learn to stop > > pinching or biting. (Or whatever the behavior is that your child > > does. Behaviors that make you crazy now, will be possible to get rid > > of with teaching.) > > > > > > > > > To help with die-off, you can give your child some activated > > charcoal (can get at the pharmacy without a prescription) to absorb > > the yeast that is being killed off. But be careful when you give it, > > because in addition to absorbing the yeast that is existing the body, > > it will absorb medicines. So don't give it shortly after giving > > meds. Die-off doesn't usually last more than a week but can be as > > long as ten days. If it is really bad, call Dr. G. He may tell you > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > You feel like PMS times twenty. During that time we didn't do any > > thing complicated. We hung out and did things he found relaxing like > > watching his favorite videos. It wasn't a time I would try to teach > > my son anything new. They feel very sick. Tylenol every three and a > > half hours helps. Hang in there. This short terrible time will > > bring great things, > > > It took years for our kids to be sick and it takes years to > > recover. Even if > > > you could wave a magic wand and make their bodies normal, you would > > have to > > > teach them everything they missed while they were sick. > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > time and it is usually ten steps forward and two steps back. When my > > son was little, the hardest thing was to keep talking to this kid who > > gave me no indication one way or another that he cared about anything > > I said or did. You have to keep treating them like they are normal > > even though they don't act normal. Don't change the world to make > > their lives easier, make them change to fit in the world. Some good > > advice I received from Maurice was to use everything they > > like to motivate them. > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > productive lives if they have parents that don't give up on them. > > You know that kid is in there, you just have to make them come out > > before they make you so mad you want to kill them. Hang in there and > > don't give up on them no matter how much they try to make you. They > > can get better. Call me if I can help. > > > > > > Marcia Hinds > > > > > > 805 497-8202 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Thanks for the responses. It is encouraging. We have not started with Dr. G and don't know if we will.  I'm trying to gather information and see if this is a direction we should go. I find all your info helpful but still feel like I'm jumping in the middle of an ongoing conversation. Please bear with me if I sound ignorant to this whole thing, but I am.  Can anyone share why they decided on the Dr. G route and what it looks like in your child's life? And, did you try a DAN protocol first and it didn't work or just straight to Dr. G?  My concern is that it is real meds, no natural stuff correct? But maybe that is what is needed. I don't trust the pharmaceutical companies so I'm always leery of potential long lasting side effects, etc. Just wondering how you deal with that or has it not been a concern?  Thanks!  dawn   Re: Aggressive Behavior > > > > Marcia, > > > > Just like many other parents on this chat list, you have given OUR > > family so much hope as well. Would you mind sharing with the group, > > how long your son was on medication, or if he still is? My son will > > be 5 next month and we have been seeing small but steady improvements > > since we started seeing Dr. G 1 1/2 years ago. > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > so " justified " in the protocol. To all parents out there, hang > > in there! About the time we start to question the protocol, within a > > week or two, we see what we call a " burst " in awareness, social > > behavior, speech and more. > > > > I realize every child is different, but I am thrilled with the > > results so far! > > > > > > > > > > > > May, > > > > > > We don't know each other but my son has been going to Dr. G since > > he was almost 5. At that time I was told by the " experts " that he > > would never be okay and would probably end up in an institution. He > > was in the 3rd percentile for speech when he entered Kindergarten. > > Most of what I did was so I wouldn't have guilt later when placement > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > know he ever had Autism and gave him a half ride. He has friends, > > drives and does all the things the doctors said would never be > > possible. After you help them physically you have to teach them > > everything they missed. In the beginning we have to teach our kids > > everything that other kids just learn on their own. That used to > > make me so mad. We used ABA in the until he could learn like other > > kids. But be careful many ABA providers are just there to take your > > money and aren't really doing it correctly. > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > off which actually as weird as it sounds is a good thing. It means > > your kid can get better.. A die-off reaction is when the yeast or > > virus is being killed off. It usually kicks up some severe reactions > > before exiting the body. I know you are never going to believe this > > because your child is acting so much more autistic, but it really is > > great news. It means your child will be helped tremendously by the > > meds. You probably feel like you are going backwards at this time, > > and it is hard to know that you are doing the right thing. However, > > when die-off is over, you will see a new kid. More focused and > > alert. You will be amazed by the change in your child. So hang on. > > After die-off it will be wonderful! The hyper,silly, aggressive and > > drunken behavior start to go away. Now they can learn to stop > > pinching or biting. (Or whatever the behavior is that your child > > does. Behaviors that make you crazy now, will be possible to get rid > > of with teaching.) > > > > > > > > > To help with die-off, you can give your child some activated > > charcoal (can get at the pharmacy without a prescription) to absorb > > the yeast that is being killed off. But be careful when you give it, > > because in addition to absorbing the yeast that is existing the body, > > it will absorb medicines. So don't give it shortly after giving > > meds. Die-off doesn't usually last more than a week but can be as > > long as ten days. If it is really bad, call Dr. G. He may tell you > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > You feel like PMS times twenty. During that time we didn't do any > > thing complicated. We hung out and did things he found relaxing like > > watching his favorite videos. It wasn't a time I would try to teach > > my son anything new. They feel very sick. Tylenol every three and a > > half hours helps. Hang in there. This short terrible time will > > bring great things, > > > It took years for our kids to be sick and it takes years to > > recover. Even if > > > you could wave a magic wand and make their bodies normal, you would > > have to > > > teach them everything they missed while they were sick. > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > time and it is usually ten steps forward and two steps back. When my > > son was little, the hardest thing was to keep talking to this kid who > > gave me no indication one way or another that he cared about anything > > I said or did. You have to keep treating them like they are normal > > even though they don't act normal. Don't change the world to make > > their lives easier, make them change to fit in the world. Some good > > advice I received from Maurice was to use everything they > > like to motivate them. > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > productive lives if they have parents that don't give up on them. > > You know that kid is in there, you just have to make them come out > > before they make you so mad you want to kill them. Hang in there and > > don't give up on them no matter how much they try to make you. They > > can get better.. Call me if I can help. > > > > > > Marcia Hinds > > > > > > 805 497-8202 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Hi, we did Dan for almost a year, I never saw any permanent changes. I love the protocol, we have had great success. I am a nurse and hated using meds, you sometimes need to treat appropriately, no one knows the effects of the so called " natural supps " either, look something as innocent as a multi-vit can be problematic for some individuals, more is not better, and nothing as far as I'm concerned is 100% safe. These kids do not have years for this to be considered a medical problem, you need to treat them ASAP. Hope this helps, but I have been where you are. my son has lost his diagnosis, and all services. Believe me PRAY PRAY PRAY, miracles do happen....Noel Dawn Dolan <dawndolan@...> wrote: Thanks for the responses. It is encouraging. We have not started with Dr. G and don't know if we will. I'm trying to gather information and see if this is a direction we should go. I find all your info helpful but still feel like I'm jumping in the middle of an ongoing conversation. Please bear with me if I sound ignorant to this whole thing, but I am. Can anyone share why they decided on the Dr. G route and what it looks like in your child's life? And, did you try a DAN protocol first and it didn't work or just straight to Dr. G? My concern is that it is real meds, no natural stuff correct? But maybe that is what is needed. I don't trust the pharmaceutical companies so I'm always leery of potential long lasting side effects, etc. Just wondering how you deal with that or has it not been a concern? Thanks! dawn Re: Aggressive Behavior > > > > Marcia, > > > > Just like many other parents on this chat list, you have given OUR > > family so much hope as well. Would you mind sharing with the group, > > how long your son was on medication, or if he still is? My son will > > be 5 next month and we have been seeing small but steady improvements > > since we started seeing Dr. G 1 1/2 years ago. > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > so " justified " in the protocol. To all parents out there, hang > > in there! About the time we start to question the protocol, within a > > week or two, we see what we call a " burst " in awareness, social > > behavior, speech and more. > > > > I realize every child is different, but I am thrilled with the > > results so far! > > > > > > > > > > > > May, > > > > > > We don't know each other but my son has been going to Dr. G since > > he was almost 5. At that time I was told by the " experts " that he > > would never be okay and would probably end up in an institution. He > > was in the 3rd percentile for speech when he entered Kindergarten. > > Most of what I did was so I wouldn't have guilt later when placement > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > know he ever had Autism and gave him a half ride. He has friends, > > drives and does all the things the doctors said would never be > > possible. After you help them physically you have to teach them > > everything they missed. In the beginning we have to teach our kids > > everything that other kids just learn on their own. That used to > > make me so mad. We used ABA in the until he could learn like other > > kids. But be careful many ABA providers are just there to take your > > money and aren't really doing it correctly. > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > off which actually as weird as it sounds is a good thing. It means > > your kid can get better.. A die-off reaction is when the yeast or > > virus is being killed off. It usually kicks up some severe reactions > > before exiting the body. I know you are never going to believe this > > because your child is acting so much more autistic, but it really is > > great news. It means your child will be helped tremendously by the > > meds. You probably feel like you are going backwards at this time, > > and it is hard to know that you are doing the right thing. However, > > when die-off is over, you will see a new kid. More focused and > > alert. You will be amazed by the change in your child. So hang on. > > After die-off it will be wonderful! The hyper,silly, aggressive and > > drunken behavior start to go away. Now they can learn to stop > > pinching or biting. (Or whatever the behavior is that your child > > does. Behaviors that make you crazy now, will be possible to get rid > > of with teaching.) > > > > > > > > > To help with die-off, you can give your child some activated > > charcoal (can get at the pharmacy without a prescription) to absorb > > the yeast that is being killed off. But be careful when you give it, > > because in addition to absorbing the yeast that is existing the body, > > it will absorb medicines. So don't give it shortly after giving > > meds. Die-off doesn't usually last more than a week but can be as > > long as ten days. If it is really bad, call Dr. G. He may tell you > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > You feel like PMS times twenty. During that time we didn't do any > > thing complicated. We hung out and did things he found relaxing like > > watching his favorite videos. It wasn't a time I would try to teach > > my son anything new. They feel very sick. Tylenol every three and a > > half hours helps. Hang in there. This short terrible time will > > bring great things, > > > It took years for our kids to be sick and it takes years to > > recover. Even if > > > you could wave a magic wand and make their bodies normal, you would > > have to > > > teach them everything they missed while they were sick. > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > time and it is usually ten steps forward and two steps back. When my > > son was little, the hardest thing was to keep talking to this kid who > > gave me no indication one way or another that he cared about anything > > I said or did. You have to keep treating them like they are normal > > even though they don't act normal. Don't change the world to make > > their lives easier, make them change to fit in the world. Some good > > advice I received from Maurice was to use everything they > > like to motivate them. > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > productive lives if they have parents that don't give up on them. > > You know that kid is in there, you just have to make them come out > > before they make you so mad you want to kill them. Hang in there and > > don't give up on them no matter how much they try to make you. They > > can get better.. Call me if I can help. > > > > > > Marcia Hinds > > > > > > 805 497-8202 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 DAWN, We tried DAN for over a year and have been very focused on her diet with no lasting progress. We are just starting on . I am very uncomfortable with the medications as well but our daughter has gone from being mildly effected at age 2 to severely effected at almost 5 and is continuing to regress. NIDs is the only intervention we have found that explains the ongoing regression in a way that makes sense for her. We have always known she is highly sensitive to everything and he has a way to understand that. It really is the first whole theory that makes sense for her. We could not just watch as our daughter faded more and more. Dawn Dolan wrote: > Thanks for the responses. It is encouraging. We have not started > with Dr. G and don't know if we will. I'm trying to gather > information and see if this is a direction we should go. I find all > your info helpful but still feel like I'm jumping in the middle of an > ongoing conversation. Please bear with me if I sound ignorant to this > whole thing, but I am. Can anyone share why they decided on the Dr. G > route and what it looks like in your child's life? And, did you try > a DAN protocol first and it didn't work or just straight to Dr. G? > > My concern is that it is real meds, no natural stuff correct? But > maybe that is what is needed. I don't trust the pharmaceutical > companies so I'm always leery of potential long lasting side effects, > etc. Just wondering how you deal with that or has it not been a concern? > > Thanks! > > dawn > > > Re: Aggressive Behavior > > > > > > Marcia, > > > > > > Just like many other parents on this chat list, you have given OUR > > > family so much hope as well. Would you mind sharing with the group, > > > how long your son was on medication, or if he still is? My son will > > > be 5 next month and we have been seeing small but steady improvements > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > > so " justified " in the protocol. To all parents out there, hang > > > in there! About the time we start to question the protocol, within a > > > week or two, we see what we call a " burst " in awareness, social > > > behavior, speech and more. > > > > > > I realize every child is different, but I am thrilled with the > > > results so far! > > > > > > > > > > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better.. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe reactions > > > before exiting the body. I know you are never going to believe this > > > because your child is acting so much more autistic, but it really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to absorb > > > the yeast that is being killed off. But be careful when you give it, > > > because in addition to absorbing the yeast that is existing the body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing like > > > watching his favorite videos. It wasn't a time I would try to teach > > > my son anything new. They feel very sick. Tylenol every three and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. When my > > > son was little, the hardest thing was to keep talking to this kid who > > > gave me no indication one way or another that he cared about anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some good > > > advice I received from Maurice was to use everything they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there and > > > don't give up on them no matter how much they try to make you. They > > > can get better.. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 We tried supplements with our son using a DAN type approach. After a lot of wasted money, we took him off everything because there was absolutely no change in behavior, cognition or language. We found Dr. G's site about a year and a half ago and it made complete sense to us in regard to the medical problems our sons were facing. Our middle son has mild/moderate autism. Before starting with Dr. G, he was diagnosed with a seizure disorder, severe migraines, and a particular nasty neurological disorder called cyclical vomiting syndrome, which involved a week of vomiting on a monthly basis for the past two years. We were told he would probably have this the rest of his life. Stress or drastic changes in routine would throw him into a cycle. At one point, he was cycling every two weeks and absent from school more than he was there. Two months into Dr. G's protocol (Feb. 08), the cyclical vomiting stopped completely. He went from horrific migraines every month for a week to only one migraine since February. His attention, socialization, and cognition have improved. We went from having a child who was deathly ill for 7 days out of the month to one who has more energy and stamina and actually wants to play video games with his brothers and be with other kids. Regarding pharmaceuticals, sure, I don't want my children to take drugs if it can be avoided, Although big pharma has been guilty of some major screw ups, it does take a lot of millions of dollars and a lot of testing to bring a drug to market. Many of these drugs have saved countless lives and enabled people to continue to lead happy and productive lives. My 23 year old, " just graduated from college, getting married in the fall " nephew is finding out just how wonderful some of the medicines created by big pharma are. He was diagnosed last week with stage 2 Hodgkins Lymphoma. The tumor in his lung measures 11cm x 11cm x 7 cm. " Huge " is the word some medical personnel have used. It's pressing on his trachea and windpipe. After his first dose of chemo, the doctor could actually feel the lymph nodes shrinking, and we have hope for his recovery. Are there side effects to these drugs? Most definitely yes, but the alternative is unthinkable. With every medicine, you must weigh the risk against the benefits. Which brings us to supplements: what are the risks and have there been enough studies to confirm what, if any, there are? For me, the bottom line is this: just because something is natural, doesn't make it good for you. Arsenic is all natural but I wouldn't eat it. Many of the supplements in the DAN protocol haven't been fully vetted, especially at the dosages aimed at in the protocol. My son is currently on two meds prescribed by Dr. G. Most parents who start their child on the DAN protocol are trying to get 10+ supplements into their child every day. There is an assumption that just because they are " all natural " there are no risks and no interactions with other supplements and meds. To my knowledge, these supplements are not regulated and controlled by anyone or any agency. This is probably more information than you wanted to know. I, too, didn't want my sons on pharmaceuticals. My opinion has been altered and my sons are the beneficiaries of that. Most of us on this protocol probably can't wait until our kids don't need these meds any more. The bottom line is they do need them now. All the best, Robyn Caroline <carrieps@...> wrote: DAWN, We tried DAN for over a year and have been very focused on her diet with no lasting progress. We are just starting on . I am very uncomfortable with the medications as well but our daughter has gone from being mildly effected at age 2 to severely effected at almost 5 and is continuing to regress. NIDs is the only intervention we have found that explains the ongoing regression in a way that makes sense for her. We have always known she is highly sensitive to everything and he has a way to understand that. It really is the first whole theory that makes sense for her. We could not just watch as our daughter faded more and more. Dawn Dolan wrote: > Thanks for the responses. It is encouraging. We have not started > with Dr. G and don't know if we will. I'm trying to gather > information and see if this is a direction we should go. I find all > your info helpful but still feel like I'm jumping in the middle of an > ongoing conversation. Please bear with me if I sound ignorant to this > whole thing, but I am. Can anyone share why they decided on the Dr. G > route and what it looks like in your child's life? And, did you try > a DAN protocol first and it didn't work or just straight to Dr. G? > > My concern is that it is real meds, no natural stuff correct? But > maybe that is what is needed. I don't trust the pharmaceutical > companies so I'm always leery of potential long lasting side effects, > etc. Just wondering how you deal with that or has it not been a concern? > > Thanks! > > dawn > > > Re: Aggressive Behavior > > > > > > Marcia, > > > > > > Just like many other parents on this chat list, you have given OUR > > > family so much hope as well. Would you mind sharing with the group, > > > how long your son was on medication, or if he still is? My son will > > > be 5 next month and we have been seeing small but steady improvements > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > > so " justified " in the protocol. To all parents out there, hang > > > in there! About the time we start to question the protocol, within a > > > week or two, we see what we call a " burst " in awareness, social > > > behavior, speech and more. > > > > > > I realize every child is different, but I am thrilled with the > > > results so far! > > > > > > > > > > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better.. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe reactions > > > before exiting the body. I know you are never going to believe this > > > because your child is acting so much more autistic, but it really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to absorb > > > the yeast that is being killed off. But be careful when you give it, > > > because in addition to absorbing the yeast that is existing the body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing like > > > watching his favorite videos. It wasn't a time I would try to teach > > > my son anything new. They feel very sick. Tylenol every three and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. When my > > > son was little, the hardest thing was to keep talking to this kid who > > > gave me no indication one way or another that he cared about anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some good > > > advice I received from Maurice was to use everything they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there and > > > don't give up on them no matter how much they try to make you. They > > > can get better.. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Hi Dawn, We tried DAN! before the protocol. Nothing helped, we were GFCF diet, Mega supplements, etc.. Thank God that we found Dr. Goldberg. It was the right decision for us. We were on a 10 month wait list and had a lot of time to think about and prepare for what we were about to do. It's our son's life! Dr. Goldberg assured us that he would not do anything that would harm our son. To make sure, we consulted with our son's local Pediatrician, ENT , and Gastroenterologist, and they all told us that the meds were not harmful, but they just didn't know why he was using them, (unaware of Dr, G's protocol). That was in 2002, my son will be 10 in July. Research the meds and the diet and talk to your local doctors. We still have anxiety from time to time, but we are convinced that this is a physiological problem (insufficient blood flow to the temporal side of the brain)- verifiable by spec scan. We decided to replace fear with faith, and treat it as we would any other medical condition- with proper medication, plus all other available therapies available (ABA & speech, academic tutor, OT, APE, etc). We didn't want to withhold meds that can potentially help our son have a healthier brain. Final advice: Pray; Do your research; then Pray again. God bless, Argie It's not easy, we had some very rough times On Jun 21, 2008, at 11:55 PM, Dawn Dolan wrote: > Thanks for the responses. It is encouraging. We have not started > with Dr. G and don't know if we will. I'm trying to gather > information and see if this is a direction we should go. I find all > your info helpful but still feel like I'm jumping in the middle of > an ongoing conversation. Please bear with me if I sound ignorant to > this whole thing, but I am. Can anyone share why they decided on > the Dr. G route and what it looks like in your child's life? And, > did you try a DAN protocol first and it didn't work or just straight > to Dr. G? > > My concern is that it is real meds, no natural stuff correct? But > maybe that is what is needed. I don't trust the pharmaceutical > companies so I'm always leery of potential long lasting side > effects, etc. Just wondering how you deal with that or has it not > been a concern? > > Thanks! > > dawn > > > Re: Aggressive Behavior > > > > > > Marcia, > > > > > > Just like many other parents on this chat list, you have given OUR > > > family so much hope as well. Would you mind sharing with the > group, > > > how long your son was on medication, or if he still is? My son > will > > > be 5 next month and we have been seeing small but steady > improvements > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are > feeling > > > so " justified " in the protocol. To all parents out there, > hang > > > in there! About the time we start to question the protocol, > within a > > > week or two, we see what we call a " burst " in awareness, social > > > behavior, speech and more. > > > > > > I realize every child is different, but I am thrilled with the > > > results so far! > > > > > > > > > > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G > since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. > He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when > placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take > your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing > die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better.. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe > reactions > > > before exiting the body. I know you are never going to believe > this > > > because your child is acting so much more autistic, but it > really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. > However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive > and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get > rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to > absorb > > > the yeast that is being killed off. But be careful when you give > it, > > > because in addition to absorbing the yeast that is existing the > body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt > like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing > like > > > watching his favorite videos. It wasn't a time I would try to > teach > > > my son anything new. They feel very sick. Tylenol every three > and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you > would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. > When my > > > son was little, the hardest thing was to keep talking to this > kid who > > > gave me no indication one way or another that he cared about > anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some > good > > > advice I received from Maurice was to use everything > they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there > and > > > don't give up on them no matter how much they try to make you. > They > > > can get better.. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Great advice, especially the prayer part! Argie Olivo <golivo@...> wrote: Hi Dawn, We tried DAN! before the protocol. Nothing helped, we were GFCF diet, Mega supplements, etc.. Thank God that we found Dr. Goldberg. It was the right decision for us. We were on a 10 month wait list and had a lot of time to think about and prepare for what we were about to do. It's our son's life! Dr. Goldberg assured us that he would not do anything that would harm our son. To make sure, we consulted with our son's local Pediatrician, ENT , and Gastroenterologist, and they all told us that the meds were not harmful, but they just didn't know why he was using them, (unaware of Dr, G's protocol). That was in 2002, my son will be 10 in July. Research the meds and the diet and talk to your local doctors. We still have anxiety from time to time, but we are convinced that this is a physiological problem (insufficient blood flow to the temporal side of the brain)- verifiable by spec scan. We decided to replace fear with faith, and treat it as we would any other medical condition- with proper medication, plus all other available therapies available (ABA & speech, academic tutor, OT, APE, etc). We didn't want to withhold meds that can potentially help our son have a healthier brain. Final advice: Pray; Do your research; then Pray again. God bless, Argie It's not easy, we had some very rough times On Jun 21, 2008, at 11:55 PM, Dawn Dolan wrote: > Thanks for the responses. It is encouraging. We have not started > with Dr. G and don't know if we will. I'm trying to gather > information and see if this is a direction we should go. I find all > your info helpful but still feel like I'm jumping in the middle of > an ongoing conversation. Please bear with me if I sound ignorant to > this whole thing, but I am. Can anyone share why they decided on > the Dr. G route and what it looks like in your child's life? And, > did you try a DAN protocol first and it didn't work or just straight > to Dr. G? > > My concern is that it is real meds, no natural stuff correct? But > maybe that is what is needed. I don't trust the pharmaceutical > companies so I'm always leery of potential long lasting side > effects, etc. Just wondering how you deal with that or has it not > been a concern? > > Thanks! > > dawn > > > Re: Aggressive Behavior > > > > > > Marcia, > > > > > > Just like many other parents on this chat list, you have given OUR > > > family so much hope as well. Would you mind sharing with the > group, > > > how long your son was on medication, or if he still is? My son > will > > > be 5 next month and we have been seeing small but steady > improvements > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are > feeling > > > so " justified " in the protocol. To all parents out there, > hang > > > in there! About the time we start to question the protocol, > within a > > > week or two, we see what we call a " burst " in awareness, social > > > behavior, speech and more. > > > > > > I realize every child is different, but I am thrilled with the > > > results so far! > > > > > > > > > > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G > since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. > He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when > placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take > your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing > die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better.. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe > reactions > > > before exiting the body. I know you are never going to believe > this > > > because your child is acting so much more autistic, but it > really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. > However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive > and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get > rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to > absorb > > > the yeast that is being killed off. But be careful when you give > it, > > > because in addition to absorbing the yeast that is existing the > body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt > like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing > like > > > watching his favorite videos. It wasn't a time I would try to > teach > > > my son anything new. They feel very sick. Tylenol every three > and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you > would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. > When my > > > son was little, the hardest thing was to keep talking to this > kid who > > > gave me no indication one way or another that he cared about > anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some > good > > > advice I received from Maurice was to use everything > they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there > and > > > don't give up on them no matter how much they try to make you. > They > > > can get better.. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 One important thing to remember about ... it is based on over 20 years worth of research in the CFIDS community. And all the DAN! stuff has already been tried and failed in CFIDS. It has been tested. If it had worked, it would have been used. And not only did it not help ... sometimes it actually hurt. Some of the supplements can feed viruses (is it taurine that's a big one? it's in peanuts too...), chelation can damage calcium-channel pathways and damage critical cytokine pathways, the GFCF is increasing allergies and pushing IgE thru the roof.... With , there is the condensed focus of many many years of research in CFIDS, AIDS dementia, infectious disease, Alzheimers, schizophrenia, etc. That amount of time is very significant. I read something from Dr Klimas recently (the professor of immunology and psychiatry and more @ Univ of Miami who is one of the top researchers in CFIDS - also a big AIDS researcher) said that when AIDS was first being studied, even before they had discovered the cause of the illness (HIV), they knew that they had to treat these people for concommitant infections while they searched for answers. That is the best we can do for our kids right now, and fortunately, for many many kids, it's enough to give their immune systems an opportunity to get better on it's own and give these kids a chance at a much more normal life than they had before. Is it a cure? Not usually, although there are lots of reports of kids becoming indistiguishable from their peers. My son isn't " typical " yet, but man, he's engaged and happy and the only issues remaining is poor social behaviors with his peers (the last thing to really develop) and that he's interested less in kid-stuff than normal - but is getting more and more interested, and playing more and more with other kids. He is still growing very well in these areas even though he's still off all the meds except the SSRI and Tenex. This is the child who's CARS rating was right in between moderate to severely autistic at the time he was tested in early school years, but he has dropped that diagnosis and is rediagnosed as Asperger Syndrome now. Yet he still seems higher functioning than any of the aspie children who come in where I work. BTW - I first became ill w/CFIDS probably 10-12 years old. Growing up, I tried so hard to find treatments - alternative, chiropractic, supplement, healthy whole grain diet, exercise programs... every single attempt I made ended up making me more ill.  I refused most antibiotics (they killed my stomach - turned out I needed antifungals with them to complete a course) for most of my life unless I was very very sick, and then often couldn't even take them all as I was supposed to. After finding Goldberg, and taking some of his recommendations, I've had periods where I've experienced mental clarity (during times of pretty bad PANDAS episodes so the difference can be pretty dramatic at times) that I never had before. I have yet to be on antivirals, and I never get enough antifungals (something that makes me feel significantly better), but I really look forward to it, and plan to travel to see Dr in August. Since I'm so reactive to so many many things, I'm like the LAST person (well, used to be) that would accept a pill. It seemed like every single medicine I ever took had a reaction that I found intolerable, to the point where I basically only went to the doctor to make sure I didn't have pneumonia (which actually I had chronic mycoplasma pn that Dr Goldberg diagnosed me w/over the PHONE after 15 years of " asthma " treatment that never helped). He's changed my life in many ways, so my trust is pretty solid. I don't think any other doctor has ever had my trust before. HTH- Re: Aggressive Behavior > > > > Marcia, > > > > Just like many other parents on this chat list, you have given OUR > > family so much hope as well. Would you mind sharing with the group, > > how long your son was on medication, or if he still is? My son will > > be 5 next month and we have been seeing small but steady improvements > > since we started seeing Dr. G 1 1/2 years ago. > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are feeling > > so " justified " in the protocol. To all parents out there, hang > > in there! About the time we start to question the protocol, within a > > week or two, we see what we call a " burst " in awareness, social > > behavior, speech and more. > > > > I realize every child is different, but I am thrilled with the > > results so far! > > > > > > > > > > > > May, > > > > > > We don't know each other but my son has been going to Dr. G since > > he was almost 5. At that time I was told by the " experts " that he > > would never be okay and would probably end up in an institution. He > > was in the 3rd percentile for speech when he entered Kindergarten. > > Most of what I did was so I wouldn't have guilt later when placement > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > know he ever had Autism and gave him a half ride. He has friends, > > drives and does all the things the doctors said would never be > > possible. After you help them physically you have to teach them > > everything they missed. In the beginning we have to teach our kids > > everything that other kids just learn on their own. That used to > > make me so mad. We used ABA in the until he could learn like other > > kids. But be careful many ABA providers are just there to take your > > money and aren't really doing it correctly. > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > off which actually as weird as it sounds is a good thing. It means > > your kid can get better.. A die-off reaction is when the yeast or > > virus is being killed off. It usually kicks up some severe reactions > > before exiting the body. I know you are never going to believe this > > because your child is acting so much more autistic, but it really is > > great news. It means your child will be helped tremendously by the > > meds. You probably feel like you are going backwards at this time, > > and it is hard to know that you are doing the right thing. However, > > when die-off is over, you will see a new kid. More focused and > > alert. You will be amazed by the change in your child. So hang on. > > After die-off it will be wonderful! The hyper,silly, aggressive and > > drunken behavior start to go away. Now they can learn to stop > > pinching or biting. (Or whatever the behavior is that your child > > does. Behaviors that make you crazy now, will be possible to get rid > > of with teaching.) > > > > > > > > > To help with die-off, you can give your child some activated > > charcoal (can get at the pharmacy without a prescription) to absorb > > the yeast that is being killed off. But be careful when you give it, > > because in addition to absorbing the yeast that is existing the body, > > it will absorb medicines. So don't give it shortly after giving > > meds. Die-off doesn't usually last more than a week but can be as > > long as ten days. If it is really bad, call Dr. G. He may tell you > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > You feel like PMS times twenty. During that time we didn't do any > > thing complicated. We hung out and did things he found relaxing like > > watching his favorite videos. It wasn't a time I would try to teach > > my son anything new. They feel very sick. Tylenol every three and a > > half hours helps. Hang in there. This short terrible time will > > bring great things, > > > It took years for our kids to be sick and it takes years to > > recover. Even if > > > you could wave a magic wand and make their bodies normal, you would > > have to > > > teach them everything they missed while they were sick. > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > time and it is usually ten steps forward and two steps back. When my > > son was little, the hardest thing was to keep talking to this kid who > > gave me no indication one way or another that he cared about anything > > I said or did. You have to keep treating them like they are normal > > even though they don't act normal. Don't change the world to make > > their lives easier, make them change to fit in the world. Some good > > advice I received from Maurice was to use everything they > > like to motivate them. > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > productive lives if they have parents that don't give up on them. > > You know that kid is in there, you just have to make them come out > > before they make you so mad you want to kill them. Hang in there and > > don't give up on them no matter how much they try to make you. They > > can get better.. Call me if I can help. > > > > > > Marcia Hinds > > > > > > 805 497-8202 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 thanks angie. i especially like the pray, research, pray. i'm already doing that. i'm thankful i stumbled onto the dr. g site. i think i was researching immune system repair or something. anyway, maybe i didn't stumble upon it at all. the prayer part has lead us to some wonderful people. dawn    PLEASE NOTE THAT MY EMAIL ADDRESS HAS CHANGED TO... dawndolan@... Re: Aggressive Behavior > > > > > > Marcia, > > > > > > Just like many other parents on this chat list, you have given OUR > > > family so much hope as well. Would you mind sharing with the > group, > > > how long your son was on medication, or if he still is? My son > will > > > be 5 next month and we have been seeing small but steady > improvements > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are > feeling > > > so " justified " in the protocol. To all parents out there, > hang > > > in there! About the time we start to question the protocol, > within a > > > week or two, we see what we call a " burst " in awareness, social > > > behavior, speech and more. > > > > > > I realize every child is different, but I am thrilled with the > > > results so far! > > > > > > > > > > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G > since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. > He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when > placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take > your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing > die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better.. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe > reactions > > > before exiting the body. I know you are never going to believe > this > > > because your child is acting so much more autistic, but it > really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. > However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive > and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get > rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to > absorb > > > the yeast that is being killed off. But be careful when you give > it, > > > because in addition to absorbing the yeast that is existing the > body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt > like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing > like > > > watching his favorite videos. It wasn't a time I would try to > teach > > > my son anything new. They feel very sick. Tylenol every three > and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover.. Even if > > > > you could wave a magic wand and make their bodies normal, you > would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. > When my > > > son was little, the hardest thing was to keep talking to this > kid who > > > gave me no indication one way or another that he cared about > anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some > good > > > advice I received from Maurice was to use everything > they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there > and > > > don't give up on them no matter how much they try to make you. > They > > > can get better.. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 Dawn, You're welcome! Email me directly if you need additional support. You'll see that there are a lot of wonderfully knowledgeable people on this list. W'e're all in this together. God bless, Argie On Jun 23, 2008, at 1:13 PM, Dawn Dolan wrote: > thanks angie. i especially like the pray, research, pray. i'm > already doing that. i'm thankful i stumbled onto the dr. g site. i > think i was researching immune system repair or something. anyway, > maybe i didn't stumble upon it at all. the prayer part has lead us > to some wonderful people. > dawn > > PLEASE NOTE THAT MY EMAIL ADDRESS HAS CHANGED TO... > dawndolan@... > > Re: Aggressive Behavior > > > > > > > > Marcia, > > > > > > > > Just like many other parents on this chat list, you have given > OUR > > > > family so much hope as well. Would you mind sharing with the > > group, > > > > how long your son was on medication, or if he still is? My son > > will > > > > be 5 next month and we have been seeing small but steady > > improvements > > > > since we started seeing Dr. G 1 1/2 years ago. > > > > > > > > Just over the last 2-3 weeks, we have seen HUGE gains and are > > feeling > > > > so " justified " in the protocol. To all parents out there, > > hang > > > > in there! About the time we start to question the protocol, > > within a > > > > week or two, we see what we call a " burst " in awareness, social > > > > behavior, speech and more. > > > > > > > > I realize every child is different, but I am thrilled with the > > > > results so far! > > > > > > > > > > > > > > > > > > > > > > May, > > > > > > > > > > We don't know each other but my son has been going to Dr. G > > since > > > > he was almost 5. At that time I was told by the " experts " that > he > > > > would never be okay and would probably end up in an institution. > > He > > > > was in the 3rd percentile for speech when he entered > Kindergarten. > > > > Most of what I did was so I wouldn't have guilt later when > > placement > > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They > don't > > > > know he ever had Autism and gave him a half ride. He has > friends, > > > > drives and does all the things the doctors said would never be > > > > possible. After you help them physically you have to teach them > > > > everything they missed. In the beginning we have to teach our > kids > > > > everything that other kids just learn on their own. That used to > > > > make me so mad. We used ABA in the until he could learn like > other > > > > kids. But be careful many ABA providers are just there to take > > your > > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing > > die- > > > > off which actually as weird as it sounds is a good thing. It > means > > > > your kid can get better.. A die-off reaction is when the yeast > or > > > > virus is being killed off. It usually kicks up some severe > > reactions > > > > before exiting the body. I know you are never going to believe > > this > > > > because your child is acting so much more autistic, but it > > really is > > > > great news. It means your child will be helped tremendously by > the > > > > meds. You probably feel like you are going backwards at this > time, > > > > and it is hard to know that you are doing the right thing. > > However, > > > > when die-off is over, you will see a new kid. More focused and > > > > alert. You will be amazed by the change in your child. So hang > on. > > > > After die-off it will be wonderful! The hyper,silly, aggressive > > and > > > > drunken behavior start to go away. Now they can learn to stop > > > > pinching or biting. (Or whatever the behavior is that your child > > > > does. Behaviors that make you crazy now, will be possible to get > > rid > > > > of with teaching.) > > > > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > > charcoal (can get at the pharmacy without a prescription) to > > absorb > > > > the yeast that is being killed off. But be careful when you give > > it, > > > > because in addition to absorbing the yeast that is existing the > > body, > > > > it will absorb medicines. So don't give it shortly after giving > > > > meds. Die-off doesn't usually last more than a week but can be > as > > > > long as ten days. If it is really bad, call Dr. G. He may tell > you > > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt > > like. > > > > You feel like PMS times twenty. During that time we didn't do > any > > > > thing complicated. We hung out and did things he found relaxing > > like > > > > watching his favorite videos. It wasn't a time I would try to > > teach > > > > my son anything new. They feel very sick. Tylenol every three > > and a > > > > half hours helps. Hang in there. This short terrible time will > > > > bring great things, > > > > > It took years for our kids to be sick and it takes years to > > > > recover.. Even if > > > > > you could wave a magic wand and make their bodies normal, you > > would > > > > have to > > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It > takes > > > > time and it is usually ten steps forward and two steps back. > > When my > > > > son was little, the hardest thing was to keep talking to this > > kid who > > > > gave me no indication one way or another that he cared about > > anything > > > > I said or did. You have to keep treating them like they are > normal > > > > even though they don't act normal. Don't change the world to > make > > > > their lives easier, make them change to fit in the world. Some > > good > > > > advice I received from Maurice was to use everything > > they > > > > like to motivate them. > > > > > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > > productive lives if they have parents that don't give up on > them. > > > > You know that kid is in there, you just have to make them come > out > > > > before they make you so mad you want to kill them. Hang in there > > and > > > > don't give up on them no matter how much they try to make you. > > They > > > > can get better.. Call me if I can help. > > > > > > > > > > Marcia Hinds > > > > > > > > > > 805 497-8202 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Noel - how old is your son? How many years and how many different drugs did it take to restore his immune health? Thanks. Di > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better.. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe reactions > > > before exiting the body. I know you are never going to believe this > > > because your child is acting so much more autistic, but it really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to absorb > > > the yeast that is being killed off. But be careful when you give it, > > > because in addition to absorbing the yeast that is existing the body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing like > > > watching his favorite videos. It wasn't a time I would try to teach > > > my son anything new. They feel very sick. Tylenol every three and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. When my > > > son was little, the hardest thing was to keep talking to this kid who > > > gave me no indication one way or another that he cared about anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some good > > > advice I received from Maurice was to use everything they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there and > > > don't give up on them no matter how much they try to make you. They > > > can get better.. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 Hi, sorry it took so long to respond, he is 3 1/2, he will be 4 at the end of Sept. He is still on some meds for immune health. sbsdws <sbsdws@...> wrote: Noel - how old is your son? How many years and how many different drugs did it take to restore his immune health? Thanks. Di > > > > > > > > May, > > > > > > > > We don't know each other but my son has been going to Dr. G since > > > he was almost 5. At that time I was told by the " experts " that he > > > would never be okay and would probably end up in an institution. He > > > was in the 3rd percentile for speech when he entered Kindergarten. > > > Most of what I did was so I wouldn't have guilt later when placement > > > might have to be considered. Thank god for guilt. > > > > > > > > > > > > > > > > He now is recovered, and attends a major university. They don't > > > know he ever had Autism and gave him a half ride. He has friends, > > > drives and does all the things the doctors said would never be > > > possible. After you help them physically you have to teach them > > > everything they missed. In the beginning we have to teach our kids > > > everything that other kids just learn on their own. That used to > > > make me so mad. We used ABA in the until he could learn like other > > > kids. But be careful many ABA providers are just there to take your > > > money and aren't really doing it correctly. > > > > > > > > > > > > > > > > Hang in there medically. It sounds like you are experiencing die- > > > off which actually as weird as it sounds is a good thing. It means > > > your kid can get better.. A die-off reaction is when the yeast or > > > virus is being killed off. It usually kicks up some severe reactions > > > before exiting the body. I know you are never going to believe this > > > because your child is acting so much more autistic, but it really is > > > great news. It means your child will be helped tremendously by the > > > meds. You probably feel like you are going backwards at this time, > > > and it is hard to know that you are doing the right thing. However, > > > when die-off is over, you will see a new kid. More focused and > > > alert. You will be amazed by the change in your child. So hang on. > > > After die-off it will be wonderful! The hyper,silly, aggressive and > > > drunken behavior start to go away. Now they can learn to stop > > > pinching or biting. (Or whatever the behavior is that your child > > > does. Behaviors that make you crazy now, will be possible to get rid > > > of with teaching.) > > > > > > > > > > > > To help with die-off, you can give your child some activated > > > charcoal (can get at the pharmacy without a prescription) to absorb > > > the yeast that is being killed off. But be careful when you give it, > > > because in addition to absorbing the yeast that is existing the body, > > > it will absorb medicines. So don't give it shortly after giving > > > meds. Die-off doesn't usually last more than a week but can be as > > > long as ten days. If it is really bad, call Dr. G. He may tell you > > > to either increase or decrease the dosage of the anti-fungal. > > > > > > > > > > > > Once I tried the pills myself just to see what die-off felt like. > > > You feel like PMS times twenty. During that time we didn't do any > > > thing complicated. We hung out and did things he found relaxing like > > > watching his favorite videos. It wasn't a time I would try to teach > > > my son anything new. They feel very sick. Tylenol every three and a > > > half hours helps. Hang in there. This short terrible time will > > > bring great things, > > > > It took years for our kids to be sick and it takes years to > > > recover. Even if > > > > you could wave a magic wand and make their bodies normal, you would > > > have to > > > > teach them everything they missed while they were sick. > > > > > > > > > > > > You don't wake up one morning and BAM they are better. It takes > > > time and it is usually ten steps forward and two steps back. When my > > > son was little, the hardest thing was to keep talking to this kid who > > > gave me no indication one way or another that he cared about anything > > > I said or did. You have to keep treating them like they are normal > > > even though they don't act normal. Don't change the world to make > > > their lives easier, make them change to fit in the world. Some good > > > advice I received from Maurice was to use everything they > > > like to motivate them. > > > > > > > > > > > > > > > > It is possible for our kids to be " normal " and lead happy > > > productive lives if they have parents that don't give up on them. > > > You know that kid is in there, you just have to make them come out > > > before they make you so mad you want to kill them. Hang in there and > > > don't give up on them no matter how much they try to make you. They > > > can get better.. Call me if I can help. > > > > > > > > Marcia Hinds > > > > > > > > 805 497-8202 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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