Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Immunovir is what causes a build up of uric acid not Acyclovir. that may explain the excess water in take but I have noticed that my son sweats heavily any time he gets exercise which is a good thing over all. I believe this is a function of the immune system cleaning out the system when a kid is ill. There are three organs the remove toxins. 1) the liver. 2) the lungs but the biggest and most effective is the skin. many of the parents recommend that any time you blow the diet is to get the kid out and have him exercise and sweat. Makes sense. Bill ________________________________ From: Kay <kp_mlist@...> ; MB12 Valtrex <mb12 valtrex > Sent: Sun, January 30, 2011 1:19:11 PM Subject: Acyclovir & Thirst Is it common to have bouts of thirst when on Acyclovir? I understand kidney functions need to monitored closely including plasma levels of Uric acid. Wondering what the excessive need for water could be related to. Thanks, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 One addition I could add about thirst: I get very thirsty in spells, and it's usually that I'm simply dehydrated. In CFS, in PANDAS, and I suspect in kids with autism, with HPA dysregulation, we can have low blood volume, and our hormones that affect how much water we hold or release can be a little out of whack. But I often don't recognize what I'm feeling as thirst, and then suddenly I'll drink a gallon in a day & I'll start feeling much better. But it's not just me... my brother and husband will be wondering why they're tired and not able to think, or why their feet feel like lead, and I'll remind them to drink lots of water. When they actually listen, it makes a big difference in them too. I strongly suspect (meaning know) my brother also has CFS/pandas type problems, and I think my husband might be affected some too. We really do need maximum fluids, and my kids are notorious about being too lazy to make their own drinks if I'm not constantly reminding them. Then suddenly they're so thirsty they'll drink all day. Once I get enough fluids, I'll feel so much better. So it may not be a negative sign or a negative side effect. It may be he's more aware of sensations or needs. Not to mention, it's winter and too dry with the heat on. One other thing that could be causing extreme thirst is a sore throat & /or strep... If there's no sign of a red or sore throat, then I'd observe for a while and chart just how much water he's needing over a week's time. I personally usually have a drink with me at all times, and if I'm not sipping, then I'm chewing ice (sometimes an 8 lb bad in a day - that's probably my anemia & ocd there). All day, non stop, from the moment I get up until I go to bed. You'd think I'd be in the bathroom all day, but I'm not, nor am I holding fluids. I have no idea sometimes where it all goes! And if I get busy and forget to drink, I'm going to feel rotten the next day, and the skin will start peeling off my lips as if I'm so dehydrated. (How do his lips look?) This has never changed no matter what meds I am or am not on. HTH ________________________________ From: Kay <kp_mlist@...> ; MB12 Valtrex <mb12 valtrex > Sent: Sun, January 30, 2011 12:19:11 PM Subject: Acyclovir & Thirst  Is it common to have bouts of thirst when on Acyclovir? I understand kidney functions need to monitored closely including plasma levels of Uric acid. Wondering what the excessive need for water could be related to. Thanks, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Interesting thanks ! We see some flashes of feeling better after the thirst bouts so you are probably right about your observation. Did I mention that the extra clear speech with eye contact etc asking for water is always a bonus ________________________________ From: <thecolemans4@...> Sent: Sun, January 30, 2011 6:45:54 PM Subject: Re: Acyclovir & Thirst One addition I could add about thirst: I get very thirsty in spells, and it's usually that I'm simply dehydrated. In CFS, in PANDAS, and I suspect in kids with autism, with HPA dysregulation, we can have low blood volume, and our hormones that affect how much water we hold or release can be a little out of whack. But I often don't recognize what I'm feeling as thirst, and then suddenly I'll drink a gallon in a day & I'll start feeling much better. But it's not just me... my brother and husband will be wondering why they're tired and not able to think, or why their feet feel like lead, and I'll remind them to drink lots of water. When they actually listen, it makes a big difference in them too. I strongly suspect (meaning know) my brother also has CFS/pandas type problems, and I think my husband might be affected some too. We really do need maximum fluids, and my kids are notorious about being too lazy to make their own drinks if I'm not constantly reminding them. Then suddenly they're so thirsty they'll drink all day. Once I get enough fluids, I'll feel so much better. So it may not be a negative sign or a negative side effect. It may be he's more aware of sensations or needs. Not to mention, it's winter and too dry with the heat on. One other thing that could be causing extreme thirst is a sore throat & /or strep... If there's no sign of a red or sore throat, then I'd observe for a while and chart just how much water he's needing over a week's time. I personally usually have a drink with me at all times, and if I'm not sipping, then I'm chewing ice (sometimes an 8 lb bad in a day - that's probably my anemia & ocd there). All day, non stop, from the moment I get up until I go to bed. You'd think I'd be in the bathroom all day, but I'm not, nor am I holding fluids. I have no idea sometimes where it all goes! And if I get busy and forget to drink, I'm going to feel rotten the next day, and the skin will start peeling off my lips as if I'm so dehydrated. (How do his lips look?) This has never changed no matter what meds I am or am not on. HTH ________________________________ From: Kay <kp_mlist@...> ; MB12 Valtrex <mb12 valtrex > Sent: Sun, January 30, 2011 12:19:11 PM Subject: Acyclovir & Thirst Is it common to have bouts of thirst when on Acyclovir? I understand kidney functions need to monitored closely including plasma levels of Uric acid. Wondering what the excessive need for water could be related to. Thanks, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 ,  Just like you, I always felt thirsty and my lip was dry even though I just drank water a few seconds ago. I had to have my bottle with me for whole day. Instead, my son didn't ask for water often but I had to remind him for drinking.  This started to change until I bought a Hexagon Alkaline Hydrogen Water Filtration System and put it in my kitchen. My original reason was I didn't want to refill the pure water from Whole Foods with heavy glass bottles every day. (I stopped to use plastic containers for long time because of chemical issue).  I even didn't check the detail about this water filter until I noticed that I didn't feel thirsty like past and I could without my bottle for a while. My friend who recommended this filter to me also mentioned she had the same experience. It was interesting that my son asked for water more. I'm not sure why but it probably because of this alkaline water can help restore body's pH balance.  I'm sending the attachment about the detail.  Hope this helps,  Xiao  From: <thecolemans4@...> Subject: Re: Acyclovir & Thirst Date: Sunday, January 30, 2011, 6:45 PM  One addition I could add about thirst: I get very thirsty in spells, and it's usually that I'm simply dehydrated. In CFS, in PANDAS, and I suspect in kids with autism, with HPA dysregulation, we can have low blood volume, and our hormones that affect how much water we hold or release can be a little out of whack. But I often don't recognize what I'm feeling as thirst, and then suddenly I'll drink a gallon in a day & I'll start feeling much better. But it's not just me... my brother and husband will be wondering why they're tired and not able to think, or why their feet feel like lead, and I'll remind them to drink lots of water. When they actually listen, it makes a big difference in them too. I strongly suspect (meaning know) my brother also has CFS/pandas type problems, and I think my husband might be affected some too. We really do need maximum fluids, and my kids are notorious about being too lazy to make their own drinks if I'm not constantly reminding them. Then suddenly they're so thirsty they'll drink all day. Once I get enough fluids, I'll feel so much better. So it may not be a negative sign or a negative side effect. It may be he's more aware of sensations or needs. Not to mention, it's winter and too dry with the heat on. One other thing that could be causing extreme thirst is a sore throat & /or strep... If there's no sign of a red or sore throat, then I'd observe for a while and chart just how much water he's needing over a week's time. I personally usually have a drink with me at all times, and if I'm not sipping, then I'm chewing ice (sometimes an 8 lb bad in a day - that's probably my anemia & ocd there). All day, non stop, from the moment I get up until I go to bed. You'd think I'd be in the bathroom all day, but I'm not, nor am I holding fluids. I have no idea sometimes where it all goes! And if I get busy and forget to drink, I'm going to feel rotten the next day, and the skin will start peeling off my lips as if I'm so dehydrated. (How do his lips look?) This has never changed no matter what meds I am or am not on. HTH ________________________________ From: Kay <kp_mlist@...> ; MB12 Valtrex <mb12 valtrex > Sent: Sun, January 30, 2011 12:19:11 PM Subject: Acyclovir & Thirst  Is it common to have bouts of thirst when on Acyclovir? I understand kidney functions need to monitored closely including plasma levels of Uric acid. Wondering what the excessive need for water could be related to. Thanks, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 , I noticed exercise and lots of water were key for . Didn't know why but your explanation sounds good to me. I Always made sure these were both part of his NiDS treatment. Thanks for sharing, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 Marcia, Thanks for always sharing your insights and what worked for . For us newbies, it's so nice to read what worked and how the children got so much better (gives us hope as we are starting on this new protocol). Just wondering..is the diet for life? Is still, as a teenager, on this diet and protocol and still take antiviral prophylactically? Thanks! Kathi From: [mailto: ] On Behalf Of and Marcia Hinds Sent: Monday, January 31, 2011 8:51 AM thecolemans4@...; Subject: Re: Acyclovir & Thirst , I noticed exercise and lots of water were key for . Didn't know why but your explanation sounds good to me. I Always made sure these were both part of his NiDS treatment. Thanks for sharing, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 You know, Xiao, I've been thinking about that. Dr G says not to drink tap water... Chlorine - kill our good gut bacteria. Flouride - neurotoxin. But Ph stuff might make sense too. I will look into that. Thanks, ________________________________ From: xiao xu <xh16882003@...> Sent: Mon, January 31, 2011 1:01:28 AM Subject: Re: Acyclovir & Thirst  ,  Just like you, I always felt thirsty and my lip was dry even though I just drank water a few seconds ago. I had to have my bottle with me for whole day. Instead, my son didn't ask for water often but I had to remind him for drinking.  This started to change until I bought a Hexagon Alkaline Hydrogen Water Filtration System and put it in my kitchen. My original reason was I didn't want to refill the pure water from Whole Foods with heavy glass bottles every day. (I stopped to use plastic containers for long time because of chemical issue).  I even didn't check the detail about this water filter until I noticed that I didn't feel thirsty like past and I could without my bottle for a while. My friend who recommended this filter to me also mentioned she had the same experience. It was interesting that my son asked for water more. I'm not sure why but it probably because of this alkaline water can help restore body's pH balance.  I'm sending the attachment about the detail.  Hope this helps,  Xiao  From: <thecolemans4@...> Subject: Re: Acyclovir & Thirst Date: Sunday, January 30, 2011, 6:45 PM  One addition I could add about thirst: I get very thirsty in spells, and it's usually that I'm simply dehydrated. In CFS, in PANDAS, and I suspect in kids with autism, with HPA dysregulation, we can have low blood volume, and our hormones that affect how much water we hold or release can be a little out of whack. But I often don't recognize what I'm feeling as thirst, and then suddenly I'll drink a gallon in a day & I'll start feeling much better. But it's not just me... my brother and husband will be wondering why they're tired and not able to think, or why their feet feel like lead, and I'll remind them to drink lots of water. When they actually listen, it makes a big difference in them too. I strongly suspect (meaning know) my brother also has CFS/pandas type problems, and I think my husband might be affected some too. We really do need maximum fluids, and my kids are notorious about being too lazy to make their own drinks if I'm not constantly reminding them. Then suddenly they're so thirsty they'll drink all day. Once I get enough fluids, I'll feel so much better. So it may not be a negative sign or a negative side effect. It may be he's more aware of sensations or needs. Not to mention, it's winter and too dry with the heat on. One other thing that could be causing extreme thirst is a sore throat & /or strep... If there's no sign of a red or sore throat, then I'd observe for a while and chart just how much water he's needing over a week's time. I personally usually have a drink with me at all times, and if I'm not sipping, then I'm chewing ice (sometimes an 8 lb bad in a day - that's probably my anemia & ocd there). All day, non stop, from the moment I get up until I go to bed. You'd think I'd be in the bathroom all day, but I'm not, nor am I holding fluids. I have no idea sometimes where it all goes! And if I get busy and forget to drink, I'm going to feel rotten the next day, and the skin will start peeling off my lips as if I'm so dehydrated. (How do his lips look?) This has never changed no matter what meds I am or am not on. HTH ________________________________ From: Kay <kp_mlist@...> ; MB12 Valtrex <mb12 valtrex > Sent: Sun, January 30, 2011 12:19:11 PM Subject: Acyclovir & Thirst  Is it common to have bouts of thirst when on Acyclovir? I understand kidney functions need to monitored closely including plasma levels of Uric acid. Wondering what the excessive need for water could be related to. Thanks, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 Please note: Dr. Goldberg does not agree with how we did the diet. Now that 's immune system works more normally he can eat almost anything and doesn't react. Although, we still don't do dairy, the following is how we did the diet when was younger. Allergy tests on kids who have immune problems sometimes indicate they are allergic to almost everything. They really aren't, it is just that their immune systems aren't working properly and they react to everything. The goal was to strengthen the body by eliminating stress on the immune system. This meant that foods and substances to which the child is highly reactive are eliminated. I usually tried to always avoid dairy and only the things that came up in the highly allergic category on his allergy test. As they get better they are no longer as sensitive to anything diet or things they are allergic to. When we began we were allergic to everything according to his allergy blood tests. But he wasn't really. When we repeated the blood test years later, he was no longer allergic to all those things. When we first started it was almost like he was standing on one foot. If he ate something he would react to, it pushed him over the edge. But as time went on he was standing on two feet and much more difficult to make him fall. His immune system was working with all we did to help it. So he wasn't affected when there was a diet infraction. For most kids, the big triggers are usually dairy, whole wheat, and milk chocolate. If you can remove the foods they are allergic to while at the same time addressing the problems with their immune systems, it can greatly improve their ability to live their lives. Like many children with autism and immune problems, my son could not have dairy products and had to limit his sugar consumption. When our family began life without milk, it seemed so difficult. I was overwhelmed at the concept of changing his diet. I thought I had to cook everything from scratch (sheer torture for someone who hated to cook). Before you take any of my suggestions I must preface them with the fact that I am not a physician or a nutritionist (just a mom) and our family does not always eat the healthiest foods. Since needed to be on a diet restricted in dairy and sugar, I didn't try to eliminate things like NutraSweet or diet drinks. I found, for , diet soda pop without caffeine was a better choice than regular pop, although we usually just drank water. 's body did better with diabetic maple syrup as opposed to more natural choices. It seemed he could process sugar substitutes better than sugar. I didn't worry about the fat content in French fries, chips, and other junk food. His diet was restrictive enough without trying to eliminate junk food. There are trade-offs in life and I just eliminated the foods that caused a reaction or were in the highly reactive column of his allergy tests. I hesitated before trying to eliminate dairy from 's diet. Before life without milk, our favorite foods and almost everything we ate was prepackaged and contained dairy. We ordered pizza at least once a week and loved eating out. I was afraid that my other child and the rest of the family would all be deprived because could not have milk products. I was convinced that for each meal I would be cooking from two different menus. But that wasn't true. We changed from casseroles to a more meat and potatoes diet, which was much healthier for all of us. We usually drank water with our meals. It really wasn't that difficult and we are all healthier as a result. Imagine the savings of thousands of dollars over the years when you don't purchase a beverage in a restaurant and just drink water. By changing a few things, I really made a difference for my child. There is life without milk! Bill Klimas was so right when he said some time ago, " You are all making yourselves and each other crazy.Some kids will be allergic to Soy or Corn while it will not hurt another kid. Also, as you kids immune system heals he may well get over some issues with certain foods. " can even have dairy without a reaction, now that his immune system is better. However, I don't recommend doing that. In the beginning, I was not sure what to feed my child. I drove myself nuts. When I woke up in the morning, my first thought was what I could feed him that he won't react to. I was convinced that if I was going to help my child I had to be chained to the kitchen counter cooking from scratch. It took some time to figure out that wasn't true. We learned how to eat at restaurants, have prepackaged foods and still eliminate dairy from 's diet. I had no idea what foods to substitute for dairy and spent hours in the grocery store reading labels. It almost paralyzed me at times until I realized I needed to concentrate on eliminating the big triggers instead of wasting hours on this and cooking from scratch. I got rid of the dairy, the things that showed up on his allergies tests in the highly allergic category, and too much sugar from too many fruits. That being said I did give him one cookie in his bag lunch so he didn't feel different from the other kids. (Dr G hated that. We fought about it all the time until I just stopped telling Dr. G) Like Bill said, there are only a finite number of hours in each day and you need to spend your time on the things that will make the biggest difference for your child instead of sweating the small stuff. My time was better spent working with my child to teach him social skills instead of cooking. Each kid is different and you need to do the best you can without making yourself or your child apprehensive about what they eat. It is important that your kid not feel totally deprived and different. I think that is far worse than a diet infraction. is now 21 and many years ago when we started the diet, there were not as many restrictions. Tropical fruit, berries, nut, peanut butter was allowed. The only restrictions other than dairy were whole wheat or chocolate (but only milk chocolate). It took me a while to realize we could still eat at Mc 's. Back then we ate hamburgers or chicken nuggets (which have an insignificant amount of milk in the breading) instead of cheeseburgers. When we had pizza, took off the cheese and put the pepperonis back on. You can also order pizza with all the fixings except cheese. It actually has more flavor that way. At Taco Bell, ordered a taco and took off most of the cheese except a few sprinkles to help make him feel like everyone else. My kids made it in spite of all the things we ate. He is now in college, number 2 in his engineering class, drives, and has a ton of friends. He is happy and one of the best people I know. This is the same kid who the shrink said would be in an institution. Now the only institution he is at is college. I'm going to share a secret about what to do if they react to some food they eat. Increase the exercise, (swimming and trampoline are best) and increase the water they drink. One thing I don't think Dr. G stresses enough is that exercise is key for our kids. This is coming from a mom who was always overweight and never exercised in her life. In the early years when there was a party at school, I used to bring different food for . Sometimes I made things that would not affect him that all the kids would like. Rice Krispy treats come to mind). But in time I realized that making him feel different was worse than that occasional party. Instead, I kept his diet very clean at home and in his bag lunch so when the occasional food problem arouse it wasn't as bad. We were very strict on the NO DAIRY and only two fruits a day (not too much sugar), but other than that we didn't worry about berries, tropical fruits etc. Some parents find the diet so taxing and restrictive that they eventually give up the diet and even the medical treatments. That is a big mistake. The medical component is essential to recovery. But if you make it too hard on yourself there is no way you will stick with it. And don't underestimate how important exercise and water is to helping them do better. Hope this helps, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 City water here in the U.S. is highly tested and regulated more than bottle water. The city must advise you if it doesn't meet standards. Most bottled water is not tested at all. When was little, I was ready to rip up my beautiful newly tiled floor so I could run a line with a filter to my ice maker. Instead, I sent a water sample to be tested. It turned out that my water was extremely healthy and contained things he needed that he wouldn't get if I put a filter on the water. So the moral of the story is, your water is probably fine and concentrate on what you can change instead of making yourself crazy. Best, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 Thanks so much Marcia! Our problem is we can not get the Eosinophils down no matter what I do. I think once we got it down to 1. I was so happy. I stuck with that diet and the next time it was up to 5. I can't seem to find anything with the diet that makes sense with the blood work. My son does not react to things now but it shows in the blood that the diet is not helping him. But I just do the best I can for all of us. Like you said I can't make myself any crazier or I will give up and I can't do that. We have seen little progress but when we quit, it gets bad. So I have to be happy with what we have. My son is so precious and people see that. He has always been adored. I know we are on the right path. As far as testing for Lymes or Bartonella (or whatever that was) or XMRV, doesn't it all come down to the same thing? We have to take the load off the immune system to help it deal with all these things or are their specific treatment for specific culprits. I know it's different with Strep/Pandas, you have to treat with long term antibiotics and I suppose Lymes is in that catagory. Thanks again, Jerri > > Please note: Dr. Goldberg does not agree with how we did the diet. Now > that > 's immune system works more normally he can eat almost anything and > doesn't react. Although, we still don't do dairy, the following is how we > did the diet when was younger. > > Allergy tests on kids who have immune problems sometimes indicate they are > allergic to almost everything. They really aren't, it is just that their > immune systems aren't working properly and they react to everything. The > goal was to strengthen the body by eliminating stress on the immune > system. > This meant that foods and substances to which the child is highly reactive > are eliminated. I usually tried to always avoid dairy and only the things > that came up in the highly allergic category on his allergy test. > > As they get better they are no longer as sensitive to anything diet or > things they are allergic to. When we began we were allergic to everything > according to his allergy blood tests. But he wasn't really. When we > repeated the blood test years later, he was no longer allergic to all > those > things. When we first started it was almost like he was standing on one > foot. If he ate something he would react to, it pushed him over the edge. > But as time went on he was standing on two feet and much more difficult to > make him fall. His immune system was working with all we did to help > it. So > he wasn't affected when there was a diet infraction. > > For most kids, the big triggers are usually dairy, whole wheat, and milk > chocolate. If you can remove the foods they are allergic to while at the > same time addressing the problems with their immune systems, it can > greatly > improve their ability to live their lives. > > Like many children with autism and immune problems, my son could not have > dairy products and had to limit his sugar consumption. When our family > began life without milk, it seemed so difficult. I was overwhelmed at the > concept of changing his diet. I thought I had to cook everything from > scratch (sheer torture for someone who hated to cook). > > Before you take any of my suggestions I must preface them with the > fact that > I am not a physician or a nutritionist (just a mom) and our family > does not > always eat the healthiest foods. Since needed to be on a diet > restricted in dairy and sugar, I didn't try to eliminate things like > NutraSweet or diet drinks. I found, for , diet soda pop without > caffeine was a better choice than regular pop, although we usually just > drank water. 's body did better with diabetic maple syrup as > opposed to > more natural choices. It seemed he could process sugar substitutes better > than sugar. > > I didn't worry about the fat content in French fries, chips, and other > junk > food. His diet was restrictive enough without trying to eliminate junk > food. There are trade-offs in life and I just eliminated the foods that > caused a reaction or were in the highly reactive column of his allergy > tests. > > I hesitated before trying to eliminate dairy from 's diet. Before life > without milk, our favorite foods and almost everything we ate was > prepackaged and contained dairy. We ordered pizza at least once a week and > loved eating out. I was afraid that my other child and the rest of the > family would all be deprived because could not have milk products. I > was convinced that for each meal I would be cooking from two different > menus. But that wasn't true. We changed from casseroles to a more meat and > potatoes diet, which was much healthier for all of us. We usually drank > water with our meals. It really wasn't that difficult and we are all > healthier as a result. Imagine the savings of thousands of dollars > over the > years when you don't purchase a beverage in a restaurant and just drink > water. By changing a few things, I really made a difference for my child. > There is life without milk! > > Bill Klimas was so right when he said some time ago, " You are all making > yourselves and each other crazy.Some kids will be allergic to Soy or Corn > while it will not hurt another kid. Also, as you kids immune system heals > he may well get over some issues with certain foods. " can even have > dairy without a reaction, now that his immune system is better. However, I > don't recommend doing that. > > In the beginning, I was not sure what to feed my child. I drove myself > nuts. When I woke up in the morning, my first thought was what I could > feed him that he won't react to. I was convinced that if I was going to > help my child I had to be chained to the kitchen counter cooking from > scratch. It took some time to figure out that wasn't true. We learned how > to eat at restaurants, have prepackaged foods and still eliminate > dairy from > 's diet. > > I had no idea what foods to substitute for dairy and spent hours in the > grocery store reading labels. It almost paralyzed me at times until I > realized I needed to concentrate on eliminating the big triggers > instead of > wasting hours on this and cooking from scratch. I got rid of the > dairy, the > things that showed up on his allergies tests in the highly allergic > category, and too much sugar from too many fruits. That being said I did > give him one cookie in his bag lunch so he didn't feel different from the > other kids. (Dr G hated that. We fought about it all the time until I just > stopped telling Dr. G) > > Like Bill said, there are only a finite number of hours in each day > and you > need to spend your time on the things that will make the biggest > difference > for your child instead of sweating the small stuff. My time was better > spent working with my child to teach him social skills instead of cooking. > Each kid is different and you need to do the best you can without making > yourself or your child apprehensive about what they eat. > > It is important that your kid not feel totally deprived and different. I > think that is far worse than a diet infraction. is now 21 and many > years ago when we started the diet, there were not as many restrictions. > Tropical fruit, berries, nut, peanut butter was allowed. The only > restrictions other than dairy were whole wheat or chocolate (but only milk > chocolate). > > It took me a while to realize we could still eat at Mc 's. Back then > we ate hamburgers or chicken nuggets (which have an insignificant > amount of > milk in the breading) instead of cheeseburgers. When we had pizza, > took off the cheese and put the pepperonis back on. You can also order > pizza with all the fixings except cheese. It actually has more flavor that > way. At Taco Bell, ordered a taco and took off most of the cheese > except a few sprinkles to help make him feel like everyone else. > > My kids made it in spite of all the things we ate. He is now in college, > number 2 in his engineering class, drives, and has a ton of friends. He is > happy and one of the best people I know. This is the same kid who the > shrink said would be in an institution. Now the only institution he is at > is college. > > I'm going to share a secret about what to do if they react to some > food they > eat. Increase the exercise, (swimming and trampoline are best) and > increase > the water they drink. One thing I don't think Dr. G stresses enough is > that > exercise is key for our kids. This is coming from a mom who was always > overweight and never exercised in her life. > > In the early years when there was a party at school, I used to bring > different food for . Sometimes I made things that would not affect him > that all the kids would like. Rice Krispy treats come to mind). But in > time > I realized that making him feel different was worse than that occasional > party. Instead, I kept his diet very clean at home and in his bag lunch so > when the occasional food problem arouse it wasn't as bad. We were very > strict on the NO DAIRY and only two fruits a day (not too much sugar), but > other than that we didn't worry about berries, tropical fruits etc. > > Some parents find the diet so taxing and restrictive that they eventually > give up the diet and even the medical treatments. That is a big > mistake. The > medical component is essential to recovery. But if you make it too hard on > yourself there is no way you will stick with it. And don't underestimate > how important exercise and water is to helping them do better. > > Hope this helps, > > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 I just want to add, we bought this little bag called " Prill beads " for $15. It is supposed to make the water alkaline. It does taste better and quenches our thirst much more. Our neighbor (chiropractor)who wanted to sell us a very expensive system to make our water alkaline said the alkaline water gets down to the cellular level plus the American diet is so acidic and is one reason there is so much cancer, anything to get your body less acidic is better. > > City water here in the U.S. is highly tested and regulated more than > bottle > water. The city must advise you if it doesn't meet standards. Most bottled > water is not tested at all. When was little, I was ready to rip up my > beautiful newly tiled floor so I could run a line with a filter to my ice > maker. Instead, I sent a water sample to be tested. It turned out that my > water was extremely healthy and contained things he needed that he > wouldn't > get if I put a filter on the water. So the moral of the story is, your > water is probably fine and concentrate on what you can change instead of > making yourself crazy. > > Best, > > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2011 Report Share Posted February 3, 2011 I'm just a mom too but I agree with you . Not everything is diet. I think environmental allergies play a part too. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 Have you all seen Dr. Cheneys studies? Dr.Cheney says that viruses trick the immune system to produce an allergic response instead of an antiviral response. Tammy F. > > I'm just a mom too but I agree with you . Not everything is diet. I think > environmental allergies play a part too. > > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 This is correct - Hi EOS can indicate presence of gardia, worms, other microbes and things ingested that the system decides it doesn't like - so it mounts a response _____ From: [mailto: ] On Behalf Of and Freeman Sent: Tuesday, February 01, 2011 8:14 AM Subject: RE: Re: Acyclovir & Thirst Just a side note, I don't personally believe that high eosins are 'exclusive' to food reactions. I believe they may also be from bacteria, pathogens, etc. JMO - not a dr, just a mom... From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Jerri Gann Sent: February-01-11 11:50 AM <mailto:%40> Subject: Re: Re: Acyclovir & Thirst Thanks so much Marcia! Our problem is we can not get the Eosinophils down no matter what I do. I think once we got it down to 1. I was so happy. I stuck with that diet and the next time it was up to 5. I can't seem to find anything with the diet that makes sense with the blood work. My son does not react to things now but it shows in the blood that the diet is not helping him. But I just do the best I can for all of us. Like you said I can't make myself any crazier or I will give up and I can't do that. We have seen little progress but when we quit, it gets bad. So I have to be happy with what we have. My son is so precious and people see that. He has always been adored. I know we are on the right path. As far as testing for Lymes or Bartonella (or whatever that was) or XMRV, doesn't it all come down to the same thing? We have to take the load off the immune system to help it deal with all these things or are their specific treatment for specific culprits. I know it's different with Strep/Pandas, you have to treat with long term antibiotics and I suppose Lymes is in that catagory. Thanks again, Jerri > > Please note: Dr. Goldberg does not agree with how we did the diet. Now > that > 's immune system works more normally he can eat almost anything and > doesn't react. Although, we still don't do dairy, the following is how we > did the diet when was younger. > > Allergy tests on kids who have immune problems sometimes indicate they are > allergic to almost everything. They really aren't, it is just that their > immune systems aren't working properly and they react to everything. The > goal was to strengthen the body by eliminating stress on the immune > system. > This meant that foods and substances to which the child is highly reactive > are eliminated. I usually tried to always avoid dairy and only the things > that came up in the highly allergic category on his allergy test. > > As they get better they are no longer as sensitive to anything diet or > things they are allergic to. When we began we were allergic to everything > according to his allergy blood tests. But he wasn't really. When we > repeated the blood test years later, he was no longer allergic to all > those > things. When we first started it was almost like he was standing on one > foot. If he ate something he would react to, it pushed him over the edge. > But as time went on he was standing on two feet and much more difficult to > make him fall. His immune system was working with all we did to help > it. So > he wasn't affected when there was a diet infraction. > > For most kids, the big triggers are usually dairy, whole wheat, and milk > chocolate. If you can remove the foods they are allergic to while at the > same time addressing the problems with their immune systems, it can > greatly > improve their ability to live their lives. > > Like many children with autism and immune problems, my son could not have > dairy products and had to limit his sugar consumption. When our family > began life without milk, it seemed so difficult. I was overwhelmed at the > concept of changing his diet. I thought I had to cook everything from > scratch (sheer torture for someone who hated to cook). > > Before you take any of my suggestions I must preface them with the > fact that > I am not a physician or a nutritionist (just a mom) and our family > does not > always eat the healthiest foods. Since needed to be on a diet > restricted in dairy and sugar, I didn't try to eliminate things like > NutraSweet or diet drinks. I found, for , diet soda pop without > caffeine was a better choice than regular pop, although we usually just > drank water. 's body did better with diabetic maple syrup as > opposed to > more natural choices. It seemed he could process sugar substitutes better > than sugar. > > I didn't worry about the fat content in French fries, chips, and other > junk > food. His diet was restrictive enough without trying to eliminate junk > food. There are trade-offs in life and I just eliminated the foods that > caused a reaction or were in the highly reactive column of his allergy > tests. > > I hesitated before trying to eliminate dairy from 's diet. Before life > without milk, our favorite foods and almost everything we ate was > prepackaged and contained dairy. We ordered pizza at least once a week and > loved eating out. I was afraid that my other child and the rest of the > family would all be deprived because could not have milk products. I > was convinced that for each meal I would be cooking from two different > menus. But that wasn't true. We changed from casseroles to a more meat and > potatoes diet, which was much healthier for all of us. We usually drank > water with our meals. It really wasn't that difficult and we are all > healthier as a result. Imagine the savings of thousands of dollars > over the > years when you don't purchase a beverage in a restaurant and just drink > water. By changing a few things, I really made a difference for my child. > There is life without milk! > > Bill Klimas was so right when he said some time ago, " You are all making > yourselves and each other crazy.Some kids will be allergic to Soy or Corn > while it will not hurt another kid. Also, as you kids immune system heals > he may well get over some issues with certain foods. " can even have > dairy without a reaction, now that his immune system is better. However, I > don't recommend doing that. > > In the beginning, I was not sure what to feed my child. I drove myself > nuts. When I woke up in the morning, my first thought was what I could > feed him that he won't react to. I was convinced that if I was going to > help my child I had to be chained to the kitchen counter cooking from > scratch. It took some time to figure out that wasn't true. We learned how > to eat at restaurants, have prepackaged foods and still eliminate > dairy from > 's diet. > > I had no idea what foods to substitute for dairy and spent hours in the > grocery store reading labels. It almost paralyzed me at times until I > realized I needed to concentrate on eliminating the big triggers > instead of > wasting hours on this and cooking from scratch. I got rid of the > dairy, the > things that showed up on his allergies tests in the highly allergic > category, and too much sugar from too many fruits. That being said I did > give him one cookie in his bag lunch so he didn't feel different from the > other kids. (Dr G hated that. We fought about it all the time until I just > stopped telling Dr. G) > > Like Bill said, there are only a finite number of hours in each day > and you > need to spend your time on the things that will make the biggest > difference > for your child instead of sweating the small stuff. My time was better > spent working with my child to teach him social skills instead of cooking. > Each kid is different and you need to do the best you can without making > yourself or your child apprehensive about what they eat. > > It is important that your kid not feel totally deprived and different. I > think that is far worse than a diet infraction. is now 21 and many > years ago when we started the diet, there were not as many restrictions. > Tropical fruit, berries, nut, peanut butter was allowed. The only > restrictions other than dairy were whole wheat or chocolate (but only milk > chocolate). > > It took me a while to realize we could still eat at Mc 's. Back then > we ate hamburgers or chicken nuggets (which have an insignificant > amount of > milk in the breading) instead of cheeseburgers. When we had pizza, > took off the cheese and put the pepperonis back on. You can also order > pizza with all the fixings except cheese. It actually has more flavor that > way. At Taco Bell, ordered a taco and took off most of the cheese > except a few sprinkles to help make him feel like everyone else. > > My kids made it in spite of all the things we ate. He is now in college, > number 2 in his engineering class, drives, and has a ton of friends. He is > happy and one of the best people I know. This is the same kid who the > shrink said would be in an institution. Now the only institution he is at > is college. > > I'm going to share a secret about what to do if they react to some > food they > eat. Increase the exercise, (swimming and trampoline are best) and > increase > the water they drink. One thing I don't think Dr. G stresses enough is > that > exercise is key for our kids. This is coming from a mom who was always > overweight and never exercised in her life. > > In the early years when there was a party at school, I used to bring > different food for . Sometimes I made things that would not affect him > that all the kids would like. Rice Krispy treats come to mind). But in > time > I realized that making him feel different was worse than that occasional > party. Instead, I kept his diet very clean at home and in his bag lunch so > when the occasional food problem arouse it wasn't as bad. We were very > strict on the NO DAIRY and only two fruits a day (not too much sugar), but > other than that we didn't worry about berries, tropical fruits etc. > > Some parents find the diet so taxing and restrictive that they eventually > give up the diet and even the medical treatments. That is a big > mistake. The > medical component is essential to recovery. But if you make it too hard on > yourself there is no way you will stick with it. And don't underestimate > how important exercise and water is to helping them do better. > > Hope this helps, > > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 Can definitely mean parasite infection. Did with us--three different ones. > > Just a side note, I don't personally believe that high eosins are > 'exclusive' to food reactions. I believe they may also be from bacteria, > pathogens, etc. JMO - not a dr, just a mom... > > > > From: [mailto: ] On Behalf Of Jerri > Gann > Sent: February-01-11 11:50 AM > > Subject: Re: Re: Acyclovir & Thirst > > > > > > Thanks so much Marcia! Our problem is we can not get the Eosinophils > down no matter what I do. I think once we got it down to 1. I was so > happy. I stuck with that diet and the next time it was up to 5. I can't > seem to find anything with the diet that makes sense with the blood > work. My son does not react to things now but it shows in the blood that > the diet is not helping him. But I just do the best I can for all of us. > Like you said I can't make myself any crazier or I will give up and I > can't do that. We have seen little progress but when we quit, it gets > bad. So I have to be happy with what we have. My son is so precious and > people see that. He has always been adored. I know we are on the right > path. As far as testing for Lymes or Bartonella (or whatever that was) > or XMRV, doesn't it all come down to the same thing? We have to take the > load off the immune system to help it deal with all these things or are > their specific treatment for specific culprits. I know it's different > with Strep/Pandas, you have to treat with long term antibiotics and I > suppose Lymes is in that catagory. Thanks again, Jerri > > > > Please note: Dr. Goldberg does not agree with how we did the diet. Now > > that > > 's immune system works more normally he can eat almost anything and > > doesn't react. Although, we still don't do dairy, the following is how we > > did the diet when was younger. > > > > Allergy tests on kids who have immune problems sometimes indicate they are > > allergic to almost everything. They really aren't, it is just that their > > immune systems aren't working properly and they react to everything. The > > goal was to strengthen the body by eliminating stress on the immune > > system. > > This meant that foods and substances to which the child is highly reactive > > are eliminated. I usually tried to always avoid dairy and only the things > > that came up in the highly allergic category on his allergy test. > > > > As they get better they are no longer as sensitive to anything diet or > > things they are allergic to. When we began we were allergic to everything > > according to his allergy blood tests. But he wasn't really. When we > > repeated the blood test years later, he was no longer allergic to all > > those > > things. When we first started it was almost like he was standing on one > > foot. If he ate something he would react to, it pushed him over the edge. > > But as time went on he was standing on two feet and much more difficult to > > make him fall. His immune system was working with all we did to help > > it. So > > he wasn't affected when there was a diet infraction. > > > > For most kids, the big triggers are usually dairy, whole wheat, and milk > > chocolate. If you can remove the foods they are allergic to while at the > > same time addressing the problems with their immune systems, it can > > greatly > > improve their ability to live their lives. > > > > Like many children with autism and immune problems, my son could not have > > dairy products and had to limit his sugar consumption. When our family > > began life without milk, it seemed so difficult. I was overwhelmed at the > > concept of changing his diet. I thought I had to cook everything from > > scratch (sheer torture for someone who hated to cook). > > > > Before you take any of my suggestions I must preface them with the > > fact that > > I am not a physician or a nutritionist (just a mom) and our family > > does not > > always eat the healthiest foods. Since needed to be on a diet > > restricted in dairy and sugar, I didn't try to eliminate things like > > NutraSweet or diet drinks. I found, for , diet soda pop without > > caffeine was a better choice than regular pop, although we usually just > > drank water. 's body did better with diabetic maple syrup as > > opposed to > > more natural choices. It seemed he could process sugar substitutes better > > than sugar. > > > > I didn't worry about the fat content in French fries, chips, and other > > junk > > food. His diet was restrictive enough without trying to eliminate junk > > food. There are trade-offs in life and I just eliminated the foods that > > caused a reaction or were in the highly reactive column of his allergy > > tests. > > > > I hesitated before trying to eliminate dairy from 's diet. Before life > > without milk, our favorite foods and almost everything we ate was > > prepackaged and contained dairy. We ordered pizza at least once a week and > > loved eating out. I was afraid that my other child and the rest of the > > family would all be deprived because could not have milk products. I > > was convinced that for each meal I would be cooking from two different > > menus. But that wasn't true. We changed from casseroles to a more meat and > > potatoes diet, which was much healthier for all of us. We usually drank > > water with our meals. It really wasn't that difficult and we are all > > healthier as a result. Imagine the savings of thousands of dollars > > over the > > years when you don't purchase a beverage in a restaurant and just drink > > water. By changing a few things, I really made a difference for my child. > > There is life without milk! > > > > Bill Klimas was so right when he said some time ago, " You are all making > > yourselves and each other crazy.Some kids will be allergic to Soy or Corn > > while it will not hurt another kid. Also, as you kids immune system heals > > he may well get over some issues with certain foods. " can even have > > dairy without a reaction, now that his immune system is better. However, I > > don't recommend doing that. > > > > In the beginning, I was not sure what to feed my child. I drove myself > > nuts. When I woke up in the morning, my first thought was what I could > > feed him that he won't react to. I was convinced that if I was going to > > help my child I had to be chained to the kitchen counter cooking from > > scratch. It took some time to figure out that wasn't true. We learned how > > to eat at restaurants, have prepackaged foods and still eliminate > > dairy from > > 's diet. > > > > I had no idea what foods to substitute for dairy and spent hours in the > > grocery store reading labels. It almost paralyzed me at times until I > > realized I needed to concentrate on eliminating the big triggers > > instead of > > wasting hours on this and cooking from scratch. I got rid of the > > dairy, the > > things that showed up on his allergies tests in the highly allergic > > category, and too much sugar from too many fruits. That being said I did > > give him one cookie in his bag lunch so he didn't feel different from the > > other kids. (Dr G hated that. We fought about it all the time until I just > > stopped telling Dr. G) > > > > Like Bill said, there are only a finite number of hours in each day > > and you > > need to spend your time on the things that will make the biggest > > difference > > for your child instead of sweating the small stuff. My time was better > > spent working with my child to teach him social skills instead of cooking. > > Each kid is different and you need to do the best you can without making > > yourself or your child apprehensive about what they eat. > > > > It is important that your kid not feel totally deprived and different. I > > think that is far worse than a diet infraction. is now 21 and many > > years ago when we started the diet, there were not as many restrictions. > > Tropical fruit, berries, nut, peanut butter was allowed. The only > > restrictions other than dairy were whole wheat or chocolate (but only milk > > chocolate). > > > > It took me a while to realize we could still eat at Mc 's. Back then > > we ate hamburgers or chicken nuggets (which have an insignificant > > amount of > > milk in the breading) instead of cheeseburgers. When we had pizza, > > took off the cheese and put the pepperonis back on. You can also order > > pizza with all the fixings except cheese. It actually has more flavor that > > way. At Taco Bell, ordered a taco and took off most of the cheese > > except a few sprinkles to help make him feel like everyone else. > > > > My kids made it in spite of all the things we ate. He is now in college, > > number 2 in his engineering class, drives, and has a ton of friends. He is > > happy and one of the best people I know. This is the same kid who the > > shrink said would be in an institution. Now the only institution he is at > > is college. > > > > I'm going to share a secret about what to do if they react to some > > food they > > eat. Increase the exercise, (swimming and trampoline are best) and > > increase > > the water they drink. One thing I don't think Dr. G stresses enough is > > that > > exercise is key for our kids. This is coming from a mom who was always > > overweight and never exercised in her life. > > > > In the early years when there was a party at school, I used to bring > > different food for . Sometimes I made things that would not affect him > > that all the kids would like. Rice Krispy treats come to mind). But in > > time > > I realized that making him feel different was worse than that occasional > > party. Instead, I kept his diet very clean at home and in his bag lunch so > > when the occasional food problem arouse it wasn't as bad. We were very > > strict on the NO DAIRY and only two fruits a day (not too much sugar), but > > other than that we didn't worry about berries, tropical fruits etc. > > > > Some parents find the diet so taxing and restrictive that they eventually > > give up the diet and even the medical treatments. That is a big > > mistake. The > > medical component is essential to recovery. But if you make it too hard on > > yourself there is no way you will stick with it. And don't underestimate > > how important exercise and water is to helping them do better. > > > > Hope this helps, > > > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 Hmm. It gets confusing, because worms & parasites etc are usually going to give a much higher eos - like over 12%... Not that any of us are having normal immune responses so that could easily not apply with our kids. I think he's suspecting diet when it's in those lower 'normal' ranges. I wonder why he doesn't use periactin? ________________________________ From: Crosss <crosswilsons@...> Sent: Fri, February 4, 2011 11:36:30 AM Subject: RE: Re: Acyclovir & Thirst  This is correct - Hi EOS can indicate presence of gardia, worms, other microbes and things ingested that the system decides it doesn't like - so it mounts a response _____ From: [mailto: ] On Behalf Of and Freeman Sent: Tuesday, February 01, 2011 8:14 AM Subject: RE: Re: Acyclovir & Thirst Just a side note, I don't personally believe that high eosins are 'exclusive' to food reactions. I believe they may also be from bacteria, pathogens, etc. JMO - not a dr, just a mom... From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Jerri Gann Sent: February-01-11 11:50 AM <mailto:%40> Subject: Re: Re: Acyclovir & Thirst Thanks so much Marcia! Our problem is we can not get the Eosinophils down no matter what I do. I think once we got it down to 1. I was so happy. I stuck with that diet and the next time it was up to 5. I can't seem to find anything with the diet that makes sense with the blood work. My son does not react to things now but it shows in the blood that the diet is not helping him. But I just do the best I can for all of us. Like you said I can't make myself any crazier or I will give up and I can't do that. We have seen little progress but when we quit, it gets bad. So I have to be happy with what we have. My son is so precious and people see that. He has always been adored. I know we are on the right path. As far as testing for Lymes or Bartonella (or whatever that was) or XMRV, doesn't it all come down to the same thing? We have to take the load off the immune system to help it deal with all these things or are their specific treatment for specific culprits. I know it's different with Strep/Pandas, you have to treat with long term antibiotics and I suppose Lymes is in that catagory. Thanks again, Jerri > > Please note: Dr. Goldberg does not agree with how we did the diet. Now > that > 's immune system works more normally he can eat almost anything and > doesn't react. Although, we still don't do dairy, the following is how we > did the diet when was younger. > > Allergy tests on kids who have immune problems sometimes indicate they are > allergic to almost everything. They really aren't, it is just that their > immune systems aren't working properly and they react to everything. The > goal was to strengthen the body by eliminating stress on the immune > system. > This meant that foods and substances to which the child is highly reactive > are eliminated. I usually tried to always avoid dairy and only the things > that came up in the highly allergic category on his allergy test. > > As they get better they are no longer as sensitive to anything diet or > things they are allergic to. When we began we were allergic to everything > according to his allergy blood tests. But he wasn't really. When we > repeated the blood test years later, he was no longer allergic to all > those > things. When we first started it was almost like he was standing on one > foot. If he ate something he would react to, it pushed him over the edge. > But as time went on he was standing on two feet and much more difficult to > make him fall. His immune system was working with all we did to help > it. So > he wasn't affected when there was a diet infraction. > > For most kids, the big triggers are usually dairy, whole wheat, and milk > chocolate. If you can remove the foods they are allergic to while at the > same time addressing the problems with their immune systems, it can > greatly > improve their ability to live their lives. > > Like many children with autism and immune problems, my son could not have > dairy products and had to limit his sugar consumption. When our family > began life without milk, it seemed so difficult. I was overwhelmed at the > concept of changing his diet. I thought I had to cook everything from > scratch (sheer torture for someone who hated to cook). > > Before you take any of my suggestions I must preface them with the > fact that > I am not a physician or a nutritionist (just a mom) and our family > does not > always eat the healthiest foods. Since needed to be on a diet > restricted in dairy and sugar, I didn't try to eliminate things like > NutraSweet or diet drinks. I found, for , diet soda pop without > caffeine was a better choice than regular pop, although we usually just > drank water. 's body did better with diabetic maple syrup as > opposed to > more natural choices. It seemed he could process sugar substitutes better > than sugar. > > I didn't worry about the fat content in French fries, chips, and other > junk > food. His diet was restrictive enough without trying to eliminate junk > food. There are trade-offs in life and I just eliminated the foods that > caused a reaction or were in the highly reactive column of his allergy > tests. > > I hesitated before trying to eliminate dairy from 's diet. Before life > without milk, our favorite foods and almost everything we ate was > prepackaged and contained dairy. We ordered pizza at least once a week and > loved eating out. I was afraid that my other child and the rest of the > family would all be deprived because could not have milk products. I > was convinced that for each meal I would be cooking from two different > menus. But that wasn't true. We changed from casseroles to a more meat and > potatoes diet, which was much healthier for all of us. We usually drank > water with our meals. It really wasn't that difficult and we are all > healthier as a result. Imagine the savings of thousands of dollars > over the > years when you don't purchase a beverage in a restaurant and just drink > water. By changing a few things, I really made a difference for my child. > There is life without milk! > > Bill Klimas was so right when he said some time ago, " You are all making > yourselves and each other crazy.Some kids will be allergic to Soy or Corn > while it will not hurt another kid. Also, as you kids immune system heals > he may well get over some issues with certain foods. " can even have > dairy without a reaction, now that his immune system is better. However, I > don't recommend doing that. > > In the beginning, I was not sure what to feed my child. I drove myself > nuts. When I woke up in the morning, my first thought was what I could > feed him that he won't react to. I was convinced that if I was going to > help my child I had to be chained to the kitchen counter cooking from > scratch. It took some time to figure out that wasn't true. We learned how > to eat at restaurants, have prepackaged foods and still eliminate > dairy from > 's diet. > > I had no idea what foods to substitute for dairy and spent hours in the > grocery store reading labels. It almost paralyzed me at times until I > realized I needed to concentrate on eliminating the big triggers > instead of > wasting hours on this and cooking from scratch. I got rid of the > dairy, the > things that showed up on his allergies tests in the highly allergic > category, and too much sugar from too many fruits. That being said I did > give him one cookie in his bag lunch so he didn't feel different from the > other kids. (Dr G hated that. We fought about it all the time until I just > stopped telling Dr. G) > > Like Bill said, there are only a finite number of hours in each day > and you > need to spend your time on the things that will make the biggest > difference > for your child instead of sweating the small stuff. My time was better > spent working with my child to teach him social skills instead of cooking. > Each kid is different and you need to do the best you can without making > yourself or your child apprehensive about what they eat. > > It is important that your kid not feel totally deprived and different. I > think that is far worse than a diet infraction. is now 21 and many > years ago when we started the diet, there were not as many restrictions. > Tropical fruit, berries, nut, peanut butter was allowed. The only > restrictions other than dairy were whole wheat or chocolate (but only milk > chocolate). > > It took me a while to realize we could still eat at Mc 's. Back then > we ate hamburgers or chicken nuggets (which have an insignificant > amount of > milk in the breading) instead of cheeseburgers. When we had pizza, > took off the cheese and put the pepperonis back on. You can also order > pizza with all the fixings except cheese. It actually has more flavor that > way. At Taco Bell, ordered a taco and took off most of the cheese > except a few sprinkles to help make him feel like everyone else. > > My kids made it in spite of all the things we ate. He is now in college, > number 2 in his engineering class, drives, and has a ton of friends. He is > happy and one of the best people I know. This is the same kid who the > shrink said would be in an institution. Now the only institution he is at > is college. > > I'm going to share a secret about what to do if they react to some > food they > eat. Increase the exercise, (swimming and trampoline are best) and > increase > the water they drink. One thing I don't think Dr. G stresses enough is > that > exercise is key for our kids. This is coming from a mom who was always > overweight and never exercised in her life. > > In the early years when there was a party at school, I used to bring > different food for . Sometimes I made things that would not affect him > that all the kids would like. Rice Krispy treats come to mind). But in > time > I realized that making him feel different was worse than that occasional > party. Instead, I kept his diet very clean at home and in his bag lunch so > when the occasional food problem arouse it wasn't as bad. We were very > strict on the NO DAIRY and only two fruits a day (not too much sugar), but > other than that we didn't worry about berries, tropical fruits etc. > > Some parents find the diet so taxing and restrictive that they eventually > give up the diet and even the medical treatments. That is a big > mistake. The > medical component is essential to recovery. But if you make it too hard on > yourself there is no way you will stick with it. And don't underestimate > how important exercise and water is to helping them do better. > > Hope this helps, > > Marcia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 This is probably an ignorant question but how do you find out if you have a parasite infection and what do you do for it? Thanks, Jerri > > Can definitely mean parasite infection. Did with us--three different > ones. > > > > > > Just a side note, I don't personally believe that high eosins are > > 'exclusive' to food reactions. I believe they may also be from bacteria, > > pathogens, etc. JMO - not a dr, just a mom... > > > > > > > > From: <mailto:%40> > [mailto: <mailto:%40>] On > Behalf Of Jerri > > Gann > > Sent: February-01-11 11:50 AM > > <mailto:%40> > > Subject: Re: Re: Acyclovir & Thirst > > > > > > > > > > > > Thanks so much Marcia! Our problem is we can not get the Eosinophils > > down no matter what I do. I think once we got it down to 1. I was so > > happy. I stuck with that diet and the next time it was up to 5. I can't > > seem to find anything with the diet that makes sense with the blood > > work. My son does not react to things now but it shows in the blood > that > > the diet is not helping him. But I just do the best I can for all of > us. > > Like you said I can't make myself any crazier or I will give up and I > > can't do that. We have seen little progress but when we quit, it gets > > bad. So I have to be happy with what we have. My son is so precious and > > people see that. He has always been adored. I know we are on the right > > path. As far as testing for Lymes or Bartonella (or whatever that was) > > or XMRV, doesn't it all come down to the same thing? We have to take > the > > load off the immune system to help it deal with all these things or are > > their specific treatment for specific culprits. I know it's different > > with Strep/Pandas, you have to treat with long term antibiotics and I > > suppose Lymes is in that catagory. Thanks again, Jerri > > > > > > Please note: Dr. Goldberg does not agree with how we did the diet. > Now > > > that > > > 's immune system works more normally he can eat almost > anything and > > > doesn't react. Although, we still don't do dairy, the following is > how we > > > did the diet when was younger. > > > > > > Allergy tests on kids who have immune problems sometimes indicate > they are > > > allergic to almost everything. They really aren't, it is just that > their > > > immune systems aren't working properly and they react to > everything. The > > > goal was to strengthen the body by eliminating stress on the immune > > > system. > > > This meant that foods and substances to which the child is highly > reactive > > > are eliminated. I usually tried to always avoid dairy and only the > things > > > that came up in the highly allergic category on his allergy test. > > > > > > As they get better they are no longer as sensitive to anything diet or > > > things they are allergic to. When we began we were allergic to > everything > > > according to his allergy blood tests. But he wasn't really. When we > > > repeated the blood test years later, he was no longer allergic to all > > > those > > > things. When we first started it was almost like he was standing > on one > > > foot. If he ate something he would react to, it pushed him over > the edge. > > > But as time went on he was standing on two feet and much more > difficult to > > > make him fall. His immune system was working with all we did to help > > > it. So > > > he wasn't affected when there was a diet infraction. > > > > > > For most kids, the big triggers are usually dairy, whole wheat, > and milk > > > chocolate. If you can remove the foods they are allergic to while > at the > > > same time addressing the problems with their immune systems, it can > > > greatly > > > improve their ability to live their lives. > > > > > > Like many children with autism and immune problems, my son could > not have > > > dairy products and had to limit his sugar consumption. When our family > > > began life without milk, it seemed so difficult. I was overwhelmed > at the > > > concept of changing his diet. I thought I had to cook everything from > > > scratch (sheer torture for someone who hated to cook). > > > > > > Before you take any of my suggestions I must preface them with the > > > fact that > > > I am not a physician or a nutritionist (just a mom) and our family > > > does not > > > always eat the healthiest foods. Since needed to be on a diet > > > restricted in dairy and sugar, I didn't try to eliminate things like > > > NutraSweet or diet drinks. I found, for , diet soda pop without > > > caffeine was a better choice than regular pop, although we usually > just > > > drank water. 's body did better with diabetic maple syrup as > > > opposed to > > > more natural choices. It seemed he could process sugar substitutes > better > > > than sugar. > > > > > > I didn't worry about the fat content in French fries, chips, and > other > > > junk > > > food. His diet was restrictive enough without trying to eliminate junk > > > food. There are trade-offs in life and I just eliminated the foods > that > > > caused a reaction or were in the highly reactive column of his allergy > > > tests. > > > > > > I hesitated before trying to eliminate dairy from 's diet. > Before life > > > without milk, our favorite foods and almost everything we ate was > > > prepackaged and contained dairy. We ordered pizza at least once a > week and > > > loved eating out. I was afraid that my other child and the rest of the > > > family would all be deprived because could not have milk > products. I > > > was convinced that for each meal I would be cooking from two different > > > menus. But that wasn't true. We changed from casseroles to a more > meat and > > > potatoes diet, which was much healthier for all of us. We usually > drank > > > water with our meals. It really wasn't that difficult and we are all > > > healthier as a result. Imagine the savings of thousands of dollars > > > over the > > > years when you don't purchase a beverage in a restaurant and just > drink > > > water. By changing a few things, I really made a difference for my > child. > > > There is life without milk! > > > > > > Bill Klimas was so right when he said some time ago, " You are all > making > > > yourselves and each other crazy.Some kids will be allergic to Soy > or Corn > > > while it will not hurt another kid. Also, as you kids immune > system heals > > > he may well get over some issues with certain foods. " can > even have > > > dairy without a reaction, now that his immune system is better. > However, I > > > don't recommend doing that. > > > > > > In the beginning, I was not sure what to feed my child. I drove myself > > > nuts. When I woke up in the morning, my first thought was what I could > > > feed him that he won't react to. I was convinced that if I was > going to > > > help my child I had to be chained to the kitchen counter cooking from > > > scratch. It took some time to figure out that wasn't true. We > learned how > > > to eat at restaurants, have prepackaged foods and still eliminate > > > dairy from > > > 's diet. > > > > > > I had no idea what foods to substitute for dairy and spent hours > in the > > > grocery store reading labels. It almost paralyzed me at times until I > > > realized I needed to concentrate on eliminating the big triggers > > > instead of > > > wasting hours on this and cooking from scratch. I got rid of the > > > dairy, the > > > things that showed up on his allergies tests in the highly allergic > > > category, and too much sugar from too many fruits. That being said > I did > > > give him one cookie in his bag lunch so he didn't feel different > from the > > > other kids. (Dr G hated that. We fought about it all the time > until I just > > > stopped telling Dr. G) > > > > > > Like Bill said, there are only a finite number of hours in each day > > > and you > > > need to spend your time on the things that will make the biggest > > > difference > > > for your child instead of sweating the small stuff. My time was better > > > spent working with my child to teach him social skills instead of > cooking. > > > Each kid is different and you need to do the best you can without > making > > > yourself or your child apprehensive about what they eat. > > > > > > It is important that your kid not feel totally deprived and > different. I > > > think that is far worse than a diet infraction. is now 21 and > many > > > years ago when we started the diet, there were not as many > restrictions. > > > Tropical fruit, berries, nut, peanut butter was allowed. The only > > > restrictions other than dairy were whole wheat or chocolate (but > only milk > > > chocolate). > > > > > > It took me a while to realize we could still eat at Mc 's. > Back then > > > we ate hamburgers or chicken nuggets (which have an insignificant > > > amount of > > > milk in the breading) instead of cheeseburgers. When we had pizza, > > > > took off the cheese and put the pepperonis back on. You can also order > > > pizza with all the fixings except cheese. It actually has more > flavor that > > > way. At Taco Bell, ordered a taco and took off most of the cheese > > > except a few sprinkles to help make him feel like everyone else. > > > > > > My kids made it in spite of all the things we ate. He is now in > college, > > > number 2 in his engineering class, drives, and has a ton of > friends. He is > > > happy and one of the best people I know. This is the same kid who the > > > shrink said would be in an institution. Now the only institution > he is at > > > is college. > > > > > > I'm going to share a secret about what to do if they react to some > > > food they > > > eat. Increase the exercise, (swimming and trampoline are best) and > > > increase > > > the water they drink. One thing I don't think Dr. G stresses > enough is > > > that > > > exercise is key for our kids. This is coming from a mom who was always > > > overweight and never exercised in her life. > > > > > > In the early years when there was a party at school, I used to bring > > > different food for . Sometimes I made things that would not > affect him > > > that all the kids would like. Rice Krispy treats come to mind). > But in > > > time > > > I realized that making him feel different was worse than that > occasional > > > party. Instead, I kept his diet very clean at home and in his bag > lunch so > > > when the occasional food problem arouse it wasn't as bad. We were very > > > strict on the NO DAIRY and only two fruits a day (not too much > sugar), but > > > other than that we didn't worry about berries, tropical fruits etc. > > > > > > Some parents find the diet so taxing and restrictive that they > eventually > > > give up the diet and even the medical treatments. That is a big > > > mistake. The > > > medical component is essential to recovery. But if you make it too > hard on > > > yourself there is no way you will stick with it. And don't > underestimate > > > how important exercise and water is to helping them do better. > > > > > > Hope this helps, > > > > > > Marcia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Stool culture, then depends on the findings what the treatment is. The DAN! groups use different ones than the mainstream. Dr G doesn't put so much stock in those. For treatment, I think Flagyl is one. Dr G doesn't like to use that - if I remember, he calls it too big of an immune knockout. ________________________________ From: Jerri Gann <njgann@...> Sent: Sat, February 5, 2011 12:45:56 AM Subject: Re: Re: Acyclovir & Thirst  This is probably an ignorant question but how do you find out if you have a parasite infection and what do you do for it? Thanks, Jerri > > Can definitely mean parasite infection. Did with us--three different > ones. > > > > > > Just a side note, I don't personally believe that high eosins are > > 'exclusive' to food reactions. I believe they may also be from bacteria, > > pathogens, etc. JMO - not a dr, just a mom... > > > > > > > > From: <mailto:%40> > [mailto: <mailto:%40>] On > Behalf Of Jerri > > Gann > > Sent: February-01-11 11:50 AM > > <mailto:%40> > > Subject: Re: Re: Acyclovir & Thirst > > > > > > > > > > > > Thanks so much Marcia! Our problem is we can not get the Eosinophils > > down no matter what I do. I think once we got it down to 1. I was so > > happy. I stuck with that diet and the next time it was up to 5. I can't > > seem to find anything with the diet that makes sense with the blood > > work. My son does not react to things now but it shows in the blood > that > > the diet is not helping him. But I just do the best I can for all of > us. > > Like you said I can't make myself any crazier or I will give up and I > > can't do that. We have seen little progress but when we quit, it gets > > bad. So I have to be happy with what we have. My son is so precious and > > people see that. He has always been adored. I know we are on the right > > path. As far as testing for Lymes or Bartonella (or whatever that was) > > or XMRV, doesn't it all come down to the same thing? We have to take > the > > load off the immune system to help it deal with all these things or are > > their specific treatment for specific culprits. I know it's different > > with Strep/Pandas, you have to treat with long term antibiotics and I > > suppose Lymes is in that catagory. Thanks again, Jerri > > > > > > Please note: Dr. Goldberg does not agree with how we did the diet. > Now > > > that > > > 's immune system works more normally he can eat almost > anything and > > > doesn't react. Although, we still don't do dairy, the following is > how we > > > did the diet when was younger. > > > > > > Allergy tests on kids who have immune problems sometimes indicate > they are > > > allergic to almost everything. They really aren't, it is just that > their > > > immune systems aren't working properly and they react to > everything. The > > > goal was to strengthen the body by eliminating stress on the immune > > > system. > > > This meant that foods and substances to which the child is highly > reactive > > > are eliminated. I usually tried to always avoid dairy and only the > things > > > that came up in the highly allergic category on his allergy test. > > > > > > As they get better they are no longer as sensitive to anything diet or > > > things they are allergic to. When we began we were allergic to > everything > > > according to his allergy blood tests. But he wasn't really. When we > > > repeated the blood test years later, he was no longer allergic to all > > > those > > > things. When we first started it was almost like he was standing > on one > > > foot. If he ate something he would react to, it pushed him over > the edge. > > > But as time went on he was standing on two feet and much more > difficult to > > > make him fall. His immune system was working with all we did to help > > > it. So > > > he wasn't affected when there was a diet infraction. > > > > > > For most kids, the big triggers are usually dairy, whole wheat, > and milk > > > chocolate. If you can remove the foods they are allergic to while > at the > > > same time addressing the problems with their immune systems, it can > > > greatly > > > improve their ability to live their lives. > > > > > > Like many children with autism and immune problems, my son could > not have > > > dairy products and had to limit his sugar consumption. When our family > > > began life without milk, it seemed so difficult. I was overwhelmed > at the > > > concept of changing his diet. I thought I had to cook everything from > > > scratch (sheer torture for someone who hated to cook). > > > > > > Before you take any of my suggestions I must preface them with the > > > fact that > > > I am not a physician or a nutritionist (just a mom) and our family > > > does not > > > always eat the healthiest foods. Since needed to be on a diet > > > restricted in dairy and sugar, I didn't try to eliminate things like > > > NutraSweet or diet drinks. I found, for , diet soda pop without > > > caffeine was a better choice than regular pop, although we usually > just > > > drank water. 's body did better with diabetic maple syrup as > > > opposed to > > > more natural choices. It seemed he could process sugar substitutes > better > > > than sugar. > > > > > > I didn't worry about the fat content in French fries, chips, and > other > > > junk > > > food. His diet was restrictive enough without trying to eliminate junk > > > food. There are trade-offs in life and I just eliminated the foods > that > > > caused a reaction or were in the highly reactive column of his allergy > > > tests. > > > > > > I hesitated before trying to eliminate dairy from 's diet. > Before life > > > without milk, our favorite foods and almost everything we ate was > > > prepackaged and contained dairy. We ordered pizza at least once a > week and > > > loved eating out. I was afraid that my other child and the rest of the > > > family would all be deprived because could not have milk > products. I > > > was convinced that for each meal I would be cooking from two different > > > menus. But that wasn't true. We changed from casseroles to a more > meat and > > > potatoes diet, which was much healthier for all of us. We usually > drank > > > water with our meals. It really wasn't that difficult and we are all > > > healthier as a result. Imagine the savings of thousands of dollars > > > over the > > > years when you don't purchase a beverage in a restaurant and just > drink > > > water. By changing a few things, I really made a difference for my > child. > > > There is life without milk! > > > > > > Bill Klimas was so right when he said some time ago, " You are all > making > > > yourselves and each other crazy.Some kids will be allergic to Soy > or Corn > > > while it will not hurt another kid. Also, as you kids immune > system heals > > > he may well get over some issues with certain foods. " can > even have > > > dairy without a reaction, now that his immune system is better. > However, I > > > don't recommend doing that. > > > > > > In the beginning, I was not sure what to feed my child. I drove myself > > > nuts. When I woke up in the morning, my first thought was what I could > > > feed him that he won't react to. I was convinced that if I was > going to > > > help my child I had to be chained to the kitchen counter cooking from > > > scratch. It took some time to figure out that wasn't true. We > learned how > > > to eat at restaurants, have prepackaged foods and still eliminate > > > dairy from > > > 's diet. > > > > > > I had no idea what foods to substitute for dairy and spent hours > in the > > > grocery store reading labels. It almost paralyzed me at times until I > > > realized I needed to concentrate on eliminating the big triggers > > > instead of > > > wasting hours on this and cooking from scratch. I got rid of the > > > dairy, the > > > things that showed up on his allergies tests in the highly allergic > > > category, and too much sugar from too many fruits. That being said > I did > > > give him one cookie in his bag lunch so he didn't feel different > from the > > > other kids. (Dr G hated that. We fought about it all the time > until I just > > > stopped telling Dr. G) > > > > > > Like Bill said, there are only a finite number of hours in each day > > > and you > > > need to spend your time on the things that will make the biggest > > > difference > > > for your child instead of sweating the small stuff. My time was better > > > spent working with my child to teach him social skills instead of > cooking. > > > Each kid is different and you need to do the best you can without > making > > > yourself or your child apprehensive about what they eat. > > > > > > It is important that your kid not feel totally deprived and > different. I > > > think that is far worse than a diet infraction. is now 21 and > many > > > years ago when we started the diet, there were not as many > restrictions. > > > Tropical fruit, berries, nut, peanut butter was allowed. The only > > > restrictions other than dairy were whole wheat or chocolate (but > only milk > > > chocolate). > > > > > > It took me a while to realize we could still eat at Mc 's. > Back then > > > we ate hamburgers or chicken nuggets (which have an insignificant > > > amount of > > > milk in the breading) instead of cheeseburgers. When we had pizza, > > > > took off the cheese and put the pepperonis back on. You can also order > > > pizza with all the fixings except cheese. It actually has more > flavor that > > > way. At Taco Bell, ordered a taco and took off most of the cheese > > > except a few sprinkles to help make him feel like everyone else. > > > > > > My kids made it in spite of all the things we ate. He is now in > college, > > > number 2 in his engineering class, drives, and has a ton of > friends. He is > > > happy and one of the best people I know. This is the same kid who the > > > shrink said would be in an institution. Now the only institution > he is at > > > is college. > > > > > > I'm going to share a secret about what to do if they react to some > > > food they > > > eat. Increase the exercise, (swimming and trampoline are best) and > > > increase > > > the water they drink. One thing I don't think Dr. G stresses > enough is > > > that > > > exercise is key for our kids. This is coming from a mom who was always > > > overweight and never exercised in her life. > > > > > > In the early years when there was a party at school, I used to bring > > > different food for . Sometimes I made things that would not > affect him > > > that all the kids would like. Rice Krispy treats come to mind). > But in > > > time > > > I realized that making him feel different was worse than that > occasional > > > party. Instead, I kept his diet very clean at home and in his bag > lunch so > > > when the occasional food problem arouse it wasn't as bad. We were very > > > strict on the NO DAIRY and only two fruits a day (not too much > sugar), but > > > other than that we didn't worry about berries, tropical fruits etc. > > > > > > Some parents find the diet so taxing and restrictive that they > eventually > > > give up the diet and even the medical treatments. That is a big > > > mistake. The > > > medical component is essential to recovery. But if you make it too > hard on > > > yourself there is no way you will stick with it. And don't > underestimate > > > how important exercise and water is to helping them do better. > > > > > > Hope this helps, > > > > > > Marcia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Huh, that may be why my youngest could never tolerate Flagyl?!! Wow, you just never know what's going to knock down the immune system, even meds! Rhonda Masengale On Feb 5, 2011, at 12:05 PM, <thecolemans4@...> wrote: > Stool culture, then depends on the findings what the treatment is. The DAN! > groups use different ones than the mainstream. Dr G doesn't put so much > stock in those. For treatment, I think Flagyl is one. Dr G doesn't like to > use that - if I remember, he calls it too big of an immune knockout. > > > > ________________________________ > From: Jerri Gann <njgann@...> > > Sent: Sat, February 5, 2011 12:45:56 AM > Subject: Re: Re: Acyclovir & Thirst > > > This is probably an ignorant question but how do you find out if you > have a parasite infection and what do you do for it? Thanks, Jerri > > > > Can definitely mean parasite infection. Did with us--three different > > ones. > > > > > > > > > > Just a side note, I don't personally believe that high eosins are > > > 'exclusive' to food reactions. I believe they may also be from bacteria, > > > pathogens, etc. JMO - not a dr, just a mom... > > > > > > > > > > > > From: <mailto:%40> > > [mailto: <mailto:%40>] On > > Behalf Of Jerri > > > Gann > > > Sent: February-01-11 11:50 AM > > > <mailto:%40> > > > Subject: Re: Re: Acyclovir & Thirst > > > > > > > > > > > > > > > > > > Thanks so much Marcia! Our problem is we can not get the Eosinophils > > > down no matter what I do. I think once we got it down to 1. I was so > > > happy. I stuck with that diet and the next time it was up to 5. I can't > > > seem to find anything with the diet that makes sense with the blood > > > work. My son does not react to things now but it shows in the blood > > that > > > the diet is not helping him. But I just do the best I can for all of > > us. > > > Like you said I can't make myself any crazier or I will give up and I > > > can't do that. We have seen little progress but when we quit, it gets > > > bad. So I have to be happy with what we have. My son is so precious and > > > people see that. He has always been adored. I know we are on the right > > > path. As far as testing for Lymes or Bartonella (or whatever that was) > > > or XMRV, doesn't it all come down to the same thing? We have to take > > the > > > load off the immune system to help it deal with all these things or are > > > their specific treatment for specific culprits. I know it's different > > > with Strep/Pandas, you have to treat with long term antibiotics and I > > > suppose Lymes is in that catagory. Thanks again, Jerri > > > > > > > > Please note: Dr. Goldberg does not agree with how we did the diet. > > Now > > > > that > > > > 's immune system works more normally he can eat almost > > anything and > > > > doesn't react. Although, we still don't do dairy, the following is > > how we > > > > did the diet when was younger. > > > > > > > > Allergy tests on kids who have immune problems sometimes indicate > > they are > > > > allergic to almost everything. They really aren't, it is just that > > their > > > > immune systems aren't working properly and they react to > > everything. The > > > > goal was to strengthen the body by eliminating stress on the immune > > > > system. > > > > This meant that foods and substances to which the child is highly > > reactive > > > > are eliminated. I usually tried to always avoid dairy and only the > > things > > > > that came up in the highly allergic category on his allergy test. > > > > > > > > As they get better they are no longer as sensitive to anything diet or > > > > things they are allergic to. When we began we were allergic to > > everything > > > > according to his allergy blood tests. But he wasn't really. When we > > > > repeated the blood test years later, he was no longer allergic to all > > > > those > > > > things. When we first started it was almost like he was standing > > on one > > > > foot. If he ate something he would react to, it pushed him over > > the edge. > > > > But as time went on he was standing on two feet and much more > > difficult to > > > > make him fall. His immune system was working with all we did to help > > > > it. So > > > > he wasn't affected when there was a diet infraction. > > > > > > > > For most kids, the big triggers are usually dairy, whole wheat, > > and milk > > > > chocolate. If you can remove the foods they are allergic to while > > at the > > > > same time addressing the problems with their immune systems, it can > > > > greatly > > > > improve their ability to live their lives. > > > > > > > > Like many children with autism and immune problems, my son could > > not have > > > > dairy products and had to limit his sugar consumption. When our family > > > > began life without milk, it seemed so difficult. I was overwhelmed > > at the > > > > concept of changing his diet. I thought I had to cook everything from > > > > scratch (sheer torture for someone who hated to cook). > > > > > > > > Before you take any of my suggestions I must preface them with the > > > > fact that > > > > I am not a physician or a nutritionist (just a mom) and our family > > > > does not > > > > always eat the healthiest foods. Since needed to be on a diet > > > > restricted in dairy and sugar, I didn't try to eliminate things like > > > > NutraSweet or diet drinks. I found, for , diet soda pop without > > > > caffeine was a better choice than regular pop, although we usually > > just > > > > drank water. 's body did better with diabetic maple syrup as > > > > opposed to > > > > more natural choices. It seemed he could process sugar substitutes > > better > > > > than sugar. > > > > > > > > I didn't worry about the fat content in French fries, chips, and > > other > > > > junk > > > > food. His diet was restrictive enough without trying to eliminate junk > > > > food. There are trade-offs in life and I just eliminated the foods > > that > > > > caused a reaction or were in the highly reactive column of his allergy > > > > tests. > > > > > > > > I hesitated before trying to eliminate dairy from 's diet. > > Before life > > > > without milk, our favorite foods and almost everything we ate was > > > > prepackaged and contained dairy. We ordered pizza at least once a > > week and > > > > loved eating out. I was afraid that my other child and the rest of the > > > > family would all be deprived because could not have milk > > products. I > > > > was convinced that for each meal I would be cooking from two different > > > > menus. But that wasn't true. We changed from casseroles to a more > > meat and > > > > potatoes diet, which was much healthier for all of us. We usually > > drank > > > > water with our meals. It really wasn't that difficult and we are all > > > > healthier as a result. Imagine the savings of thousands of dollars > > > > over the > > > > years when you don't purchase a beverage in a restaurant and just > > drink > > > > water. By changing a few things, I really made a difference for my > > child. > > > > There is life without milk! > > > > > > > > Bill Klimas was so right when he said some time ago, " You are all > > making > > > > yourselves and each other crazy.Some kids will be allergic to Soy > > or Corn > > > > while it will not hurt another kid. Also, as you kids immune > > system heals > > > > he may well get over some issues with certain foods. " can > > even have > > > > dairy without a reaction, now that his immune system is better. > > However, I > > > > don't recommend doing that. > > > > > > > > In the beginning, I was not sure what to feed my child. I drove myself > > > > nuts. When I woke up in the morning, my first thought was what I could > > > > feed him that he won't react to. I was convinced that if I was > > going to > > > > help my child I had to be chained to the kitchen counter cooking from > > > > scratch. It took some time to figure out that wasn't true. We > > learned how > > > > to eat at restaurants, have prepackaged foods and still eliminate > > > > dairy from > > > > 's diet. > > > > > > > > I had no idea what foods to substitute for dairy and spent hours > > in the > > > > grocery store reading labels. It almost paralyzed me at times until I > > > > realized I needed to concentrate on eliminating the big triggers > > > > instead of > > > > wasting hours on this and cooking from scratch. I got rid of the > > > > dairy, the > > > > things that showed up on his allergies tests in the highly allergic > > > > category, and too much sugar from too many fruits. That being said > > I did > > > > give him one cookie in his bag lunch so he didn't feel different > > from the > > > > other kids. (Dr G hated that. We fought about it all the time > > until I just > > > > stopped telling Dr. G) > > > > > > > > Like Bill said, there are only a finite number of hours in each day > > > > and you > > > > need to spend your time on the things that will make the biggest > > > > difference > > > > for your child instead of sweating the small stuff. My time was better > > > > spent working with my child to teach him social skills instead of > > cooking. > > > > Each kid is different and you need to do the best you can without > > making > > > > yourself or your child apprehensive about what they eat. > > > > > > > > It is important that your kid not feel totally deprived and > > different. I > > > > think that is far worse than a diet infraction. is now 21 and > > many > > > > years ago when we started the diet, there were not as many > > restrictions. > > > > Tropical fruit, berries, nut, peanut butter was allowed. The only > > > > restrictions other than dairy were whole wheat or chocolate (but > > only milk > > > > chocolate). > > > > > > > > It took me a while to realize we could still eat at Mc 's. > > Back then > > > > we ate hamburgers or chicken nuggets (which have an insignificant > > > > amount of > > > > milk in the breading) instead of cheeseburgers. When we had pizza, > > > > > > took off the cheese and put the pepperonis back on. You can also order > > > > pizza with all the fixings except cheese. It actually has more > > flavor that > > > > way. At Taco Bell, ordered a taco and took off most of the cheese > > > > except a few sprinkles to help make him feel like everyone else. > > > > > > > > My kids made it in spite of all the things we ate. He is now in > > college, > > > > number 2 in his engineering class, drives, and has a ton of > > friends. He is > > > > happy and one of the best people I know. This is the same kid who the > > > > shrink said would be in an institution. Now the only institution > > he is at > > > > is college. > > > > > > > > I'm going to share a secret about what to do if they react to some > > > > food they > > > > eat. Increase the exercise, (swimming and trampoline are best) and > > > > increase > > > > the water they drink. One thing I don't think Dr. G stresses > > enough is > > > > that > > > > exercise is key for our kids. This is coming from a mom who was always > > > > overweight and never exercised in her life. > > > > > > > > In the early years when there was a party at school, I used to bring > > > > different food for . Sometimes I made things that would not > > affect him > > > > that all the kids would like. Rice Krispy treats come to mind). > > But in > > > > time > > > > I realized that making him feel different was worse than that > > occasional > > > > party. Instead, I kept his diet very clean at home and in his bag > > lunch so > > > > when the occasional food problem arouse it wasn't as bad. We were very > > > > strict on the NO DAIRY and only two fruits a day (not too much > > sugar), but > > > > other than that we didn't worry about berries, tropical fruits etc. > > > > > > > > Some parents find the diet so taxing and restrictive that they > > eventually > > > > give up the diet and even the medical treatments. That is a big > > > > mistake. The > > > > medical component is essential to recovery. But if you make it too > > hard on > > > > yourself there is no way you will stick with it. And don't > > underestimate > > > > how important exercise and water is to helping them do better. > > > > > > > > Hope this helps, > > > > > > > > Marcia > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Well I don't know if he meant a knock-out in the same sense as a knock-down - just a big blast of broad spectrum antibiotics is a negative in Dr G's opinion. I've also never ever done well on any of the 'big guns' either. ________________________________ From: Rhonda Masengale <rhondamasengale@...> " " < > Sent: Sat, February 5, 2011 1:42:04 PM Subject: Re: Re: Acyclovir & Thirst  Huh, that may be why my youngest could never tolerate Flagyl?!! Wow, you just never know what's going to knock down the immune system, even meds! Rhonda Masengale On Feb 5, 2011, at 12:05 PM, <thecolemans4@...> wrote: > Stool culture, then depends on the findings what the treatment is. The DAN! > groups use different ones than the mainstream. Dr G doesn't put so much > stock in those. For treatment, I think Flagyl is one. Dr G doesn't like to > use that - if I remember, he calls it too big of an immune knockout. > > > > ________________________________ > From: Jerri Gann <njgann@...> > > Sent: Sat, February 5, 2011 12:45:56 AM > Subject: Re: Re: Acyclovir & Thirst > > > This is probably an ignorant question but how do you find out if you > have a parasite infection and what do you do for it? Thanks, Jerri > > > > Can definitely mean parasite infection. Did with us--three different > > ones. > > > > > > > > > > Just a side note, I don't personally believe that high eosins are > > > 'exclusive' to food reactions. I believe they may also be from bacteria, > > > pathogens, etc. JMO - not a dr, just a mom... > > > > > > > > > > > > From: <mailto:%40> > > [mailto: <mailto:%40>] On > > Behalf Of Jerri > > > Gann > > > Sent: February-01-11 11:50 AM > > > <mailto:%40> > > > Subject: Re: Re: Acyclovir & Thirst > > > > > > > > > > > > > > > > > > Thanks so much Marcia! Our problem is we can not get the Eosinophils > > > down no matter what I do. I think once we got it down to 1. I was so > > > happy. I stuck with that diet and the next time it was up to 5. I can't > > > seem to find anything with the diet that makes sense with the blood > > > work. My son does not react to things now but it shows in the blood > > that > > > the diet is not helping him. But I just do the best I can for all of > > us. > > > Like you said I can't make myself any crazier or I will give up and I > > > can't do that. We have seen little progress but when we quit, it gets > > > bad. So I have to be happy with what we have. My son is so precious and > > > people see that. He has always been adored. I know we are on the right > > > path. As far as testing for Lymes or Bartonella (or whatever that was) > > > or XMRV, doesn't it all come down to the same thing? We have to take > > the > > > load off the immune system to help it deal with all these things or are > > > their specific treatment for specific culprits. I know it's different > > > with Strep/Pandas, you have to treat with long term antibiotics and I > > > suppose Lymes is in that catagory. Thanks again, Jerri > > > > > > > > Please note: Dr. Goldberg does not agree with how we did the diet. > > Now > > > > that > > > > 's immune system works more normally he can eat almost > > anything and > > > > doesn't react. Although, we still don't do dairy, the following is > > how we > > > > did the diet when was younger. > > > > > > > > Allergy tests on kids who have immune problems sometimes indicate > > they are > > > > allergic to almost everything. They really aren't, it is just that > > their > > > > immune systems aren't working properly and they react to > > everything. The > > > > goal was to strengthen the body by eliminating stress on the immune > > > > system. > > > > This meant that foods and substances to which the child is highly > > reactive > > > > are eliminated. I usually tried to always avoid dairy and only the > > things > > > > that came up in the highly allergic category on his allergy test. > > > > > > > > As they get better they are no longer as sensitive to anything diet or > > > > things they are allergic to. When we began we were allergic to > > everything > > > > according to his allergy blood tests. But he wasn't really. When we > > > > repeated the blood test years later, he was no longer allergic to all > > > > those > > > > things. When we first started it was almost like he was standing > > on one > > > > foot. If he ate something he would react to, it pushed him over > > the edge. > > > > But as time went on he was standing on two feet and much more > > difficult to > > > > make him fall. His immune system was working with all we did to help > > > > it. So > > > > he wasn't affected when there was a diet infraction. > > > > > > > > For most kids, the big triggers are usually dairy, whole wheat, > > and milk > > > > chocolate. If you can remove the foods they are allergic to while > > at the > > > > same time addressing the problems with their immune systems, it can > > > > greatly > > > > improve their ability to live their lives. > > > > > > > > Like many children with autism and immune problems, my son could > > not have > > > > dairy products and had to limit his sugar consumption. When our family > > > > began life without milk, it seemed so difficult. I was overwhelmed > > at the > > > > concept of changing his diet. I thought I had to cook everything from > > > > scratch (sheer torture for someone who hated to cook). > > > > > > > > Before you take any of my suggestions I must preface them with the > > > > fact that > > > > I am not a physician or a nutritionist (just a mom) and our family > > > > does not > > > > always eat the healthiest foods. Since needed to be on a diet > > > > restricted in dairy and sugar, I didn't try to eliminate things like > > > > NutraSweet or diet drinks. I found, for , diet soda pop without > > > > caffeine was a better choice than regular pop, although we usually > > just > > > > drank water. 's body did better with diabetic maple syrup as > > > > opposed to > > > > more natural choices. It seemed he could process sugar substitutes > > better > > > > than sugar. > > > > > > > > I didn't worry about the fat content in French fries, chips, and > > other > > > > junk > > > > food. His diet was restrictive enough without trying to eliminate junk > > > > food. There are trade-offs in life and I just eliminated the foods > > that > > > > caused a reaction or were in the highly reactive column of his allergy > > > > tests. > > > > > > > > I hesitated before trying to eliminate dairy from 's diet. > > Before life > > > > without milk, our favorite foods and almost everything we ate was > > > > prepackaged and contained dairy. We ordered pizza at least once a > > week and > > > > loved eating out. I was afraid that my other child and the rest of the > > > > family would all be deprived because could not have milk > > products. I > > > > was convinced that for each meal I would be cooking from two different > > > > menus. But that wasn't true. We changed from casseroles to a more > > meat and > > > > potatoes diet, which was much healthier for all of us. We usually > > drank > > > > water with our meals. It really wasn't that difficult and we are all > > > > healthier as a result. Imagine the savings of thousands of dollars > > > > over the > > > > years when you don't purchase a beverage in a restaurant and just > > drink > > > > water. By changing a few things, I really made a difference for my > > child. > > > > There is life without milk! > > > > > > > > Bill Klimas was so right when he said some time ago, " You are all > > making > > > > yourselves and each other crazy.Some kids will be allergic to Soy > > or Corn > > > > while it will not hurt another kid. Also, as you kids immune > > system heals > > > > he may well get over some issues with certain foods. " can > > even have > > > > dairy without a reaction, now that his immune system is better. > > However, I > > > > don't recommend doing that. > > > > > > > > In the beginning, I was not sure what to feed my child. I drove myself > > > > nuts. When I woke up in the morning, my first thought was what I could > > > > feed him that he won't react to. I was convinced that if I was > > going to > > > > help my child I had to be chained to the kitchen counter cooking from > > > > scratch. It took some time to figure out that wasn't true. We > > learned how > > > > to eat at restaurants, have prepackaged foods and still eliminate > > > > dairy from > > > > 's diet. > > > > > > > > I had no idea what foods to substitute for dairy and spent hours > > in the > > > > grocery store reading labels. It almost paralyzed me at times until I > > > > realized I needed to concentrate on eliminating the big triggers > > > > instead of > > > > wasting hours on this and cooking from scratch. I got rid of the > > > > dairy, the > > > > things that showed up on his allergies tests in the highly allergic > > > > category, and too much sugar from too many fruits. That being said > > I did > > > > give him one cookie in his bag lunch so he didn't feel different > > from the > > > > other kids. (Dr G hated that. We fought about it all the time > > until I just > > > > stopped telling Dr. G) > > > > > > > > Like Bill said, there are only a finite number of hours in each day > > > > and you > > > > need to spend your time on the things that will make the biggest > > > > difference > > > > for your child instead of sweating the small stuff. My time was better > > > > spent working with my child to teach him social skills instead of > > cooking. > > > > Each kid is different and you need to do the best you can without > > making > > > > yourself or your child apprehensive about what they eat. > > > > > > > > It is important that your kid not feel totally deprived and > > different. I > > > > think that is far worse than a diet infraction. is now 21 and > > many > > > > years ago when we started the diet, there were not as many > > restrictions. > > > > Tropical fruit, berries, nut, peanut butter was allowed. The only > > > > restrictions other than dairy were whole wheat or chocolate (but > > only milk > > > > chocolate). > > > > > > > > It took me a while to realize we could still eat at Mc 's. > > Back then > > > > we ate hamburgers or chicken nuggets (which have an insignificant > > > > amount of > > > > milk in the breading) instead of cheeseburgers. When we had pizza, > > > > > > took off the cheese and put the pepperonis back on. You can also order > > > > pizza with all the fixings except cheese. It actually has more > > flavor that > > > > way. At Taco Bell, ordered a taco and took off most of the cheese > > > > except a few sprinkles to help make him feel like everyone else. > > > > > > > > My kids made it in spite of all the things we ate. He is now in > > college, > > > > number 2 in his engineering class, drives, and has a ton of > > friends. He is > > > > happy and one of the best people I know. This is the same kid who the > > > > shrink said would be in an institution. Now the only institution > > he is at > > > > is college. > > > > > > > > I'm going to share a secret about what to do if they react to some > > > > food they > > > > eat. Increase the exercise, (swimming and trampoline are best) and > > > > increase > > > > the water they drink. One thing I don't think Dr. G stresses > > enough is > > > > that > > > > exercise is key for our kids. This is coming from a mom who was always > > > > overweight and never exercised in her life. > > > > > > > > In the early years when there was a party at school, I used to bring > > > > different food for . Sometimes I made things that would not > > affect him > > > > that all the kids would like. Rice Krispy treats come to mind). > > But in > > > > time > > > > I realized that making him feel different was worse than that > > occasional > > > > party. Instead, I kept his diet very clean at home and in his bag > > lunch so > > > > when the occasional food problem arouse it wasn't as bad. We were very > > > > strict on the NO DAIRY and only two fruits a day (not too much > > sugar), but > > > > other than that we didn't worry about berries, tropical fruits etc. > > > > > > > > Some parents find the diet so taxing and restrictive that they > > eventually > > > > give up the diet and even the medical treatments. That is a big > > > > mistake. The > > > > medical component is essential to recovery. But if you make it too > > hard on > > > > yourself there is no way you will stick with it. And don't > > underestimate > > > > how important exercise and water is to helping them do better. > > > > > > > > Hope this helps, > > > > > > > > Marcia > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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