Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 I want to share, my girl finally got HHV6 1:10. She was dealing with this for all her life. Once i thought she would always live with this. So, once again Dr. G was right. it is a matter of time and patience and follow all the recomendations as strictly as possible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 That's fantastic, ! My son has high HHV6 also. I am getting my paperwork in order to see Dr Goldberg. Is 1:10 normal or just lower? And what improvements have you seen from this viral improvement? More language? Clarity? Behavior? Thanks! Sheryl Sent from my iPhone On Mar 5, 2011, at 6:46 AM, " aliciacuevaz " <aliciacuevaz@...> wrote: > I want to share, my girl finally got HHV6 1:10. > She was dealing with this for all her life. > Once i thought she would always live with this. > So, once again Dr. G was right. it is a matter of time and patience and follow all the recomendations as strictly as possible. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 > Thank you so much for describing your daughter's improvements. It is just amazing that at a level of 740 she couldn't walk up the stairs TO CLARIFY, IN THIS MOMENT SHE WAS SICK FROM STOMAGE, FROM THE FLU ... EVERYTHING WAS DISREGULATED. THE VIRUS TOO. SO, THIS KIND OF SITUATIONS MUST NOT HAPPEN. DR. GOLDBERG, EXPLAIN ME, SHE WOULD NEVER HAVE A FLU MORE THAN 1 MONTH, THIS IS SO BAD FOR THE IMMUNE SYSTEM, AND THAT A VIRAL FLU NEVER LASTS MORE THAN 1 WEEK, AFTER THAT THE PEDIATRICIAN MUST SSEE IF SHE NEED AN ANTIBIOTIC OR SOMETHING LIKE THAT. THAT IS WHY IN MY OPINION IS IMPORTANT TO FOLLOW HIS INSTRUCTIONS, IN TIME THE GIRL IMPROVED IN THE GENERAL. .. Poor baby. So glad you were able to get her help. What country do you live in? > I LIVE IN PERU > Thank you! > Sheryl > > Sent from my iPhone > > On Mar 5, 2011, at 11:10 AM, " aliciacuevaz " <aliciacuevaz@...> wrote: > > > 1:10 is the normal range. > > This days she looks healthy, no cold sores, no stye, no FLU. > > This pair of months she is been fine, happy, enjoying the life. I guess it must be related to her improve in the virus. > > In my country we are in summer, so it also helps. > > > > For her HHV6 was in 320, 160,and 740 along the years. > > When she was in 740 we got a very bad moment for a few days, she got migraine, she cannot walk up the stairs, nor open the door. Then slowly thing got better. > > > > I realized that there were some foods that were not helping, as lemon, artichocke, lentils, she is very reactive, and for me was very difficult to find all the problematic foods; i guess finally the diet is fine; this is very important and helps a lot. > > > > Her improvements were not drastic, only once when we used for the first time Famvir, 15 days after she began talking, not as a regular girl, but there appeared language. > > It was in the begining, we got up and down, but in average always progress. > > > > Dr. G won´t wait for the virus to be down, he gives some other meds as the SSRI´s, tenex... and this helps in the meantime. > > > > I cannot say that with this virus in 10 she is a normal girl, but she is on her way. Improving slowly. > > > > So, the best thing that you are doing is to visit the doctor. > > > > > > > > > > > I want to share, my girl finally got HHV6 1:10. > > > > She was dealing with this for all her life. > > > > Once i thought she would always live with this. > > > > So, once again Dr. G was right. it is a matter of time and patience and follow all the recomendations as strictly as possible. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2011 Report Share Posted March 5, 2011 Were parasites ruled out? Kristy -- Thumb typed! aliciacuevaz <aliciacuevaz@...> wrote: > Thank you so much for describing your daughter's improvements. It is just amazing that at a level of 740 she couldn't walk up the stairs TO CLARIFY, IN THIS MOMENT SHE WAS SICK FROM STOMAGE, FROM THE FLU ... EVERYTHING WAS DISREGULATED. THE VIRUS TOO. SO, THIS KIND OF SITUATIONS MUST NOT HAPPEN. DR. GOLDBERG, EXPLAIN ME, SHE WOULD NEVER HAVE A FLU MORE THAN 1 MONTH, THIS IS SO BAD FOR THE IMMUNE SYSTEM, AND THAT A VIRAL FLU NEVER LASTS MORE THAN 1 WEEK, AFTER THAT THE PEDIATRICIAN MUST SSEE IF SHE NEED AN ANTIBIOTIC OR SOMETHING LIKE THAT. THAT IS WHY IN MY OPINION IS IMPORTANT TO FOLLOW HIS INSTRUCTIONS, IN TIME THE GIRL IMPROVED IN THE GENERAL. .. Poor baby. So glad you were able to get her help. What country do you live in? > I LIVE IN PERU > Thank you! > Sheryl > > Sent from my iPhone > > On Mar 5, 2011, at 11:10 AM, " aliciacuevaz " <aliciacuevaz@...> wrote: > > > 1:10 is the normal range. > > This days she looks healthy, no cold sores, no stye, no FLU. > > This pair of months she is been fine, happy, enjoying the life. I guess it must be related to her improve in the virus. > > In my country we are in summer, so it also helps. > > > > For her HHV6 was in 320, 160,and 740 along the years. > > When she was in 740 we got a very bad moment for a few days, she got migraine, she cannot walk up the stairs, nor open the door. Then slowly thing got better. > > > > I realized that there were some foods that were not helping, as lemon, artichocke, lentils, she is very reactive, and for me was very difficult to find all the problematic foods; i guess finally the diet is fine; this is very important and helps a lot. > > > > Her improvements were not drastic, only once when we used for the first time Famvir, 15 days after she began talking, not as a regular girl, but there appeared language. > > It was in the begining, we got up and down, but in average always progress. > > > > Dr. G won´t wait for the virus to be down, he gives some other meds as the SSRI´s, tenex... and this helps in the meantime. > > > > I cannot say that with this virus in 10 she is a normal girl, but she is on her way. Improving slowly. > > > > So, the best thing that you are doing is to visit the doctor. > > > > > > > > > > > I want to share, my girl finally got HHV6 1:10. > > > > She was dealing with this for all her life. > > > > Once i thought she would always live with this. > > > > So, once again Dr. G was right. it is a matter of time and patience and follow all the recomendations as strictly as possible. > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 - I don't know that he meant permanently. I did see periods where my kids were more reactive, and then that did ease up. They're not nearly as reactive as other times - at least not to most things. Soy lecithen still wrecks our worlds, but I believe whatever soy does it a different thing than food reactions. For a while, it seems like all that 'energy' the immune system was expressing has to go somewhere. That might be one of the reasons behind Dr G's being against removal of all traces of gluten. Even celiacs that have to remove gluten have experienced problems from doing so, like an increase in reactions (though different than their reaction to gluten) to other foods (although they still recover from their celiac symptoms from the removal of wheat as far as I understand). Don't borrow worry from the future though. I did that all the time, and while there's plenty in my life to worry about, not even half of the ones I did worry about came true, and a lot that never occured to me did ... My kid never had to give up oats, and they're off the diet list now I think (as a whole grain), but he never made us stop back then, because eos's never were bad. Thank goodness, too, because he loves oatmeal cookies, which I make once in a while as a reward (and then he eats too much sugar). But he dumps most grains on his own. He'll always eventually stop eating any food he eats right now, because he will only eat 1-2 kinds at a time until he burns out to death and won't touch them for a year. So you could say he self-enforces his own rotation diets! Hey cool - there's a positive way I could look at something that makes me completely insane. I'm going to go write that one down lol. HTH ________________________________ From: Pedersen <mpedestrian@...> Sent: Mon, March 7, 2011 2:11:36 PM Subject: Re: HHV6  Do you know the reason Dr. G says its common to have increased sensitivity to foods when you finally get the virus under control? I know we seemed to experience increased sensitivity to foods when changing diets...and I think it was because it wasn't constant exposure to allergens... so once they are out of body more... the reaction is more intense. If the exposure is constant the immune system (autoimmune) can't maintain as high of levels of activation. But I wonder what would account for it when virus is under control. I'm not looking forward to my child being more reactive to food. I don't want to take out all grains completely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Taking out all grains has been challenging, but the results have been so worthwhile. SOOOOOO much more language, and focus and engagement and eye contact. He's the most " typical " he's ever been. Kristy Nardini Tazzini Stainless Steel Bottles www.tazzini.com kristy@... 858.243.1929 <http://www.facebook.com/tazzinicompany> Find us on Facebook! <http://www.twitter.com/tazzini> Follow us on Twitter! From: [mailto: ] On Behalf Of Pedersen Sent: Monday, March 07, 2011 12:12 PM Subject: Re: HHV6 Do you know the reason Dr. G says its common to have increased sensitivity to foods when you finally get the virus under control? I know we seemed to experience increased sensitivity to foods when changing diets...and I think it was because it wasn't constant exposure to allergens... so once they are out of body more... the reaction is more intense. If the exposure is constant the immune system (autoimmune) can't maintain as high of levels of activation. But I wonder what would account for it when virus is under control. I'm not looking forward to my child being more reactive to food. I don't want to take out all grains completely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 I'm very new to this, but just wondering.. When you guys say raking all grains out, do you mean taking all whole grains out? Do the kids still have grains but not whole grains?! Sent from my iPhone On Mar 7, 2011, at 7:03 PM, " Kristy Nardini " <knardini@...> wrote: > Taking out all grains has been challenging, but the results have been so > worthwhile. SOOOOOO much more language, and focus and engagement and eye > contact. He's the most " typical " he's ever been. > > Kristy Nardini > > Tazzini Stainless Steel Bottles > > www.tazzini.com > > kristy@... > > 858.243.1929 > > <http://www.facebook.com/tazzinicompany> Find us on Facebook! > > <http://www.twitter.com/tazzini> Follow us on Twitter! > > From: [mailto: ] On Behalf Of > Pedersen > Sent: Monday, March 07, 2011 12:12 PM > > Subject: Re: HHV6 > > Do you know the reason Dr. G says its common to have increased sensitivity > to foods when you finally get the virus under control? > > I know we seemed to experience increased sensitivity to foods when changing > diets...and I think it was because it wasn't constant exposure to > allergens... so once they are out of body more... the reaction is more > intense. If the exposure is constant the immune system (autoimmune) can't > maintain as high of levels of activation. But I wonder what would account > for it when virus is under control. > > I'm not looking forward to my child being more reactive to food. I don't > want to take out all grains completely. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 I’ve taken my son off all grains recently. Including processed white flour and corn. Kristy Nardini Tazzini Stainless Steel Bottles www.tazzini.com kristy@... 858.243.1929 <http://www.facebook.com/tazzinicompany> Find us on Facebook! <http://www.twitter.com/tazzini> Follow us on Twitter! From: [mailto: ] On Behalf Of Y S Sent: Monday, March 07, 2011 9:10 PM Subject: Re: Re: HHV6 I'm very new to this, but just wondering.. When you guys say raking all grains out, do you mean taking all whole grains out? Do the kids still have grains but not whole grains?! Sent from my iPhone On Mar 7, 2011, at 7:03 PM, " Kristy Nardini " <knardini@... <mailto:knardini%40roadrunner.com> > wrote: > Taking out all grains has been challenging, but the results have been so > worthwhile. SOOOOOO much more language, and focus and engagement and eye > contact. He's the most " typical " he's ever been. > > Kristy Nardini > > Tazzini Stainless Steel Bottles > > www.tazzini.com > > kristy@... <mailto:kristy%40tazzini.com> > > 858.243.1929 > > <http://www.facebook.com/tazzinicompany> Find us on Facebook! > > <http://www.twitter.com/tazzini> Follow us on Twitter! > > From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of > Pedersen > Sent: Monday, March 07, 2011 12:12 PM > <mailto:%40> > Subject: Re: HHV6 > > Do you know the reason Dr. G says its common to have increased sensitivity > to foods when you finally get the virus under control? > > I know we seemed to experience increased sensitivity to foods when changing > diets...and I think it was because it wasn't constant exposure to > allergens... so once they are out of body more... the reaction is more > intense. If the exposure is constant the immune system (autoimmune) can't > maintain as high of levels of activation. But I wonder what would account > for it when virus is under control. > > I'm not looking forward to my child being more reactive to food. I don't > want to take out all grains completely. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Hi Martha,  Thanks for your sharing. So, did you mean it is positive that the antiviral brought the HHV6 out of hiding?  What happened to your child after his HHV6 titers went to above? Did he become better or worse? Would you please share more detail?  Much appreciated,  Xiao  > > > I want to share, my girl finally got HHV6 1:10. > > She was dealing with this for all her life. > > Once i thought she would always live with this. > > So, once again Dr. G was right. it is a matter of time and patience and > follow all the recomendations as strictly as possible. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Robyn,  Thanks for reply and explanation about HHV6.  What were differences you noticed about Noah when his HHV6 level was in the range and above?  How is he doing now?  Thank you so much,  Xiao  > > > I want to share, my girl finally got HHV6 1:10. > > She was dealing with this for all her life. > > Once i thought she would always live with this. > > So, once again Dr. G was right. it is a matter of time and patience and > follow all the recomendations as strictly as possible. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 , Each kid reacts to different things. We never gave up soy or grains, only whole grains. What worked for 's kid is different than what may work for yours . We only got rid of dairy and the big triggers on 's allergy blood tests. So don't worry before you have something to worry about. These kids make us crazy enough without us moms making it worse. Having said that I was a basket case at the beginning of this thing so I'm not sure I'm the one to listen to. Hang on it will get better with the medical treatment. Best, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Most are just not whole grains. The super sensitive may have to go further if they're not seeing the improvements you would expect. HTH  ________________________________ From: Y S <mm39041@...> " " < > Sent: Mon, March 7, 2011 11:10:16 PM Subject: Re: Re: HHV6  I'm very new to this, but just wondering.. When you guys say raking all grains out, do you mean taking all whole grains out? Do the kids still have grains but not whole grains?! Sent from my iPhone On Mar 7, 2011, at 7:03 PM, " Kristy Nardini " <knardini@...> wrote: > Taking out all grains has been challenging, but the results have been so > worthwhile. SOOOOOO much more language, and focus and engagement and eye > contact. He's the most " typical " he's ever been. > > Kristy Nardini > > Tazzini Stainless Steel Bottles > > www.tazzini.com > > kristy@... > > 858.243.1929 > > <http://www.facebook.com/tazzinicompany> Find us on Facebook! > > <http://www.twitter.com/tazzini> Follow us on Twitter! > > From: [mailto: ] On Behalf Of > Pedersen > Sent: Monday, March 07, 2011 12:12 PM > > Subject: Re: HHV6 > > Do you know the reason Dr. G says its common to have increased sensitivity > to foods when you finally get the virus under control? > > I know we seemed to experience increased sensitivity to foods when changing > diets...and I think it was because it wasn't constant exposure to > allergens... so once they are out of body more... the reaction is more > intense. If the exposure is constant the immune system (autoimmune) can't > maintain as high of levels of activation. But I wonder what would account > for it when virus is under control. > > I'm not looking forward to my child being more reactive to food. I don't > want to take out all grains completely. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 depends on every individual kid. For example yesterday dr. G recommended me to increase potatoe in place of white rice. > > > Taking out all grains has been challenging, but the results have been so > > worthwhile. SOOOOOO much more language, and focus and engagement and eye > > contact. He's the most " typical " he's ever been. > > > > Kristy Nardini > > > > Tazzini Stainless Steel Bottles > > > > www.tazzini.com > > > > kristy@... <mailto:kristy%40tazzini.com> > > > > 858.243.1929 > > > > <http://www.facebook.com/tazzinicompany> Find us on Facebook! > > > > <http://www.twitter.com/tazzini> Follow us on Twitter! > > > > From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of > > Pedersen > > Sent: Monday, March 07, 2011 12:12 PM > > <mailto:%40> > > Subject: Re: HHV6 > > > > Do you know the reason Dr. G says its common to have increased sensitivity > > to foods when you finally get the virus under control? > > > > I know we seemed to experience increased sensitivity to foods when changing > > diets...and I think it was because it wasn't constant exposure to > > allergens... so once they are out of body more... the reaction is more > > intense. If the exposure is constant the immune system (autoimmune) can't > > maintain as high of levels of activation. But I wonder what would account > > for it when virus is under control. > > > > I'm not looking forward to my child being more reactive to food. I don't > > want to take out all grains completely. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Hi, Sheryl. I have three boys on Dr. G's protocol, two of whom had seizure disorders. My oldest son was successfully weaned off Zarontin about 18 months into the protocol. My middle son had a seizure disorder and another neurological condition called Cyclical Vomiting Syndrome. He would throw up for several days once a month preceded and followed by migraines. Four months into antiviral treatment, the Cyclical Vomiting stopped and the frequency of migraines decreased. It took us a couple of tries to wean him off anti-seizure meds, but he has been off them for about a year now with no recurrent seizures. HTH, Robyn From: Sheryl Saturnino <ssaturnino@...> Subject: Re: HHV6 Date: Wednesday, March 9, 2011, 9:41 AM Â Hi, Jill, Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age 9, also has seizures. I was wondering how long you have been on the protocol and if your son's seizures have improved/gone away. Or did you have control of them with Lamictal? And if anyone else's children have had seizures and you are on the protocol, I'd love to have you weigh in, as well. I am about half way through Dr. G's work and still have to compile a lot of paperwork before I can submit my son's stuff for an appt. with Dr. G. Thanks for your help. Sheryl ________________________________ From: sjillboyer <sjillboyer@...> Sent: Wed, March 9, 2011 4:38:59 AM Subject: HHV6 I was wondering when your children (and yourselves) are getting your HHV6 levels checked, are they looking for both HHV6A and HHV6B? Are you also getting other HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures and I read a while back on the HHV website that lamictal fights against HHV6a but not HHV6B (or maybe I have that backwards). Thank you, Jill p.s. I may have asked this before but I have a short term memory. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 All three of my kids' overall health has improved dramatically. Now we're starting to see nice gains socially and academically. No more two steps forward and three back. Please keep us posted. Robyn > > From: Sheryl Saturnino <ssaturnino@...> > Subject: Re: HHV6 > > Date: Wednesday, March 9, 2011, 9:41 AM > > > > Hi, Jill, > > Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age > > 9, also has seizures. I was wondering how long you have been on the protocol > > and if your son's seizures have improved/gone away. Or did you have control of > > them with Lamictal? > > And if anyone else's children have had seizures and you are on the protocol, I'd > > love to have you weigh in, as well. > > I am about half way through Dr. G's work and still have to compile a lot of > > paperwork before I can submit my son's stuff for an appt. with Dr. G. > > Thanks for your help. > > Sheryl > > ________________________________ > > From: sjillboyer <sjillboyer@...> > > > > Sent: Wed, March 9, 2011 4:38:59 AM > > Subject: HHV6 > > I was wondering when your children (and yourselves) are getting your HHV6 levels > > checked, are they looking for both HHV6A and HHV6B? Are you also getting other > > HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures > > and I read a while back on the HHV website that lamictal fights against HHV6a > > but not HHV6B (or maybe I have that backwards). > > Thank you, > > Jill > > p.s. I may have asked this before but I have a short term memory. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Hi Sheryl, My children are not on the protocol which is why they are still sick and my oldest still has a severe seizure disorder. I have been following this list for a long time now but yet to see Dr. G or Dr. R. I am a single mother with only medicaid for my kiddos. Their father resides overseas in France so I do not have health insurance through him either. I have an aunt with Fibromylagia and ME/CFS and my children's paternal aunt has had ME/CFS since 1998 (same year my oldest was born). I also had an aunt pass away from MS several years ago (she was married to uncle so not genetically related) and my ex's cousin died from MS the same year. I am hoping to get enough reliable providers to help so that I can go back to work full time so that I can get health insurance and get with the program. There are other parents here that have children with seizures and they are now seizure free with this protocol. There is so much literature out there that shows HHV causes seizures. All the best, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Robyn, Thank you for your words of hope for the rest of us! My daughter has seizures...I found the connection of HHV6 and seizures 2 years ago...we tested her and found out that she had had it. We have been trying to find a way to correct things ever since and finally made an appt. to see Dr. G in early May (had to delay due to scheduling Spect Scan). We are so ready for her to be free of the migraines that she gets from her Lamictal. It breaks my heart every time she gets a headache...(pretty often) and it is always after receiving her meds. I sure hope to have a seizure free, med free child one day...that is our goal. Thanks again, Tricia > > > > > > From: Sheryl Saturnino <ssaturnino@...> > > > Subject: Re: HHV6 > > > > > > Date: Wednesday, March 9, 2011, 9:41 AM > > > > > > > > > > > > Hi, Jill, > > > > > > Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age > > > > > > 9, also has seizures. I was wondering how long you have been on the protocol > > > > > > and if your son's seizures have improved/gone away. Or did you have control of > > > > > > them with Lamictal? > > > > > > And if anyone else's children have had seizures and you are on the protocol, I'd > > > > > > love to have you weigh in, as well. > > > > > > I am about half way through Dr. G's work and still have to compile a lot of > > > > > > paperwork before I can submit my son's stuff for an appt. with Dr. G. > > > > > > Thanks for your help. > > > > > > Sheryl > > > > > > ________________________________ > > > > > > From: sjillboyer <sjillboyer@...> > > > > > > > > > > > > Sent: Wed, March 9, 2011 4:38:59 AM > > > > > > Subject: HHV6 > > > > > > I was wondering when your children (and yourselves) are getting your HHV6 levels > > > > > > checked, are they looking for both HHV6A and HHV6B? Are you also getting other > > > > > > HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures > > > > > > and I read a while back on the HHV website that lamictal fights against HHV6a > > > > > > but not HHV6B (or maybe I have that backwards). > > > > > > Thank you, > > > > > > Jill > > > > > > p.s. I may have asked this > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 In my opinion, this is the only way to go. The rest of the medical community is reluctant to acknowledge the role of viruses, especially HHV6, in these disorders. Regarding Lamictal, my oldest son was allergic to it. He was the 1% of patients that experienced burning blisters in his mouth and throat. It was horrible and he never said a word. I took him to an ENT because he kept clearing his throat and had difficulty swallowing. These kids are in pain all the time, so sometimes a little more doesn't seem that bad to them. We did have good seizure control on Zarontin. We saw a difference in both boys after we weaned them off because antiseizure meds dampen all electrical activity in the brain. My oldest son didn't have a seizure after weaning. Noah did and we had to put him back on. Three months later we tried again and were successful. HTH, Robyn --- On Thu, 3/10/11, westbrook66@... <westbrook66@...> wrote: From: westbrook66@... <westbrook66@...> Subject: Re: HHV6 Date: Thursday, March 10, 2011, 6:27 AM Â Robyn, Thank you for your words of hope for the rest of us! My daughter has seizures...I found the connection of HHV6 and seizures 2 years ago...we tested her and found out that she had had it. We have been trying to find a way to correct things ever since and finally made an appt. to see Dr. G in early May (had to delay due to scheduling Spect Scan). We are so ready for her to be free of the migraines that she gets from her Lamictal. It breaks my heart every time she gets a headache...(pretty often) and it is always after receiving her meds. I sure hope to have a seizure free, med free child one day...that is our goal. Thanks again, Tricia > > > > > > From: Sheryl Saturnino <ssaturnino@...> > > > Subject: Re: HHV6 > > > > > > Date: Wednesday, March 9, 2011, 9:41 AM > > > > > > > > > > > > Hi, Jill, > > > > > > Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age > > > > > > 9, also has seizures. I was wondering how long you have been on the protocol > > > > > > and if your son's seizures have improved/gone away. Or did you have control of > > > > > > them with Lamictal? > > > > > > And if anyone else's children have had seizures and you are on the protocol, I'd > > > > > > love to have you weigh in, as well. > > > > > > I am about half way through Dr. G's work and still have to compile a lot of > > > > > > paperwork before I can submit my son's stuff for an appt. with Dr. G. > > > > > > Thanks for your help. > > > > > > Sheryl > > > > > > ________________________________ > > > > > > From: sjillboyer <sjillboyer@...> > > > > > > > > > > > > Sent: Wed, March 9, 2011 4:38:59 AM > > > > > > Subject: HHV6 > > > > > > I was wondering when your children (and yourselves) are getting your HHV6 levels > > > > > > checked, are they looking for both HHV6A and HHV6B? Are you also getting other > > > > > > HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures > > > > > > and I read a while back on the HHV website that lamictal fights against HHV6a > > > > > > but not HHV6B (or maybe I have that backwards). > > > > > > Thank you, > > > > > > Jill > > > > > > p.s. I may have asked this > > Quote Link to comment Share on other sites More sharing options...
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