Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 , My son has NEVER had high titers, and Dr. G has had him on either Valtrex or Famvir for over 4 years. In my son's case it was hypotonia (low muscle tone) plus was a viral pattern in the blood work... wish I could remember what the pattern was but I can't explain it in detail. I know his red cells are always a smidge low but there's more to it than that. On Valtrex my son's muscle tone NORMALIZED and he began to have normal reflexes. This was all documented by a pediatric specialist who had seen him since he was about two (prescribed his orthotics, therapy, etc.) and has monitored him ever since. She was so shocked... I remember the look on her face the day she realized he had normal reflexes. She said " This just doesn't happen! " . She immediately called Dr. Goldberg... she has been very impressed with the progress both of my boys have made. She is, needless to say, always very interested to hear what Dr. Goldberg is up to when we visit her office. When my son was a baby, our pediatrician told me he might never walk... now he is in the " normal " range for large motor skills. He is is still quite uncoordinated but doesn't qualify for therapy anymore. I have heard of other cases where patients of Dr. Goldberg have had their muscle tone normalize. In fact another son of mine had an excellent improvement in that area as well under Dr. G's care (he was on Famvir). Caroline > From: " K. Fischer " <elfischer@...> > Reply-< > > Date: Tue, 13 Jun 2006 20:18:13 -0500 > < > > Subject: RE: Re: A gentle reminder > > Michele: > > If a child doesn't have titers, what markers would suggest a trial of it > anyway? Just curious. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Caroline, we had the same thing. My son didn't have high titers either and was always super healthy, but he had low muscle tone. When Dr. G put him on an anti-viral his muscle tone improved dramatically. His OT and our family doctor were both very impressed. You should see him now. He hasn't been on an anti-viral for over a year and he has the most muscular legs (I think from all that jumping on the trampoline). I wish mine were as lean and well-defined as his! Rhoda RE: Re: A gentle reminder > > Michele: > > If a child doesn't have titers, what markers would suggest a trial of it > anyway? Just curious. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Hi - My youngest son is but is not on the spectrum - although I do see some subtle OCD-ish personality. He was caught early, didn't have all his vaccines after he had far worse reactions than his " ASD " brother, and got started on the protocol at around 15-18 months old (memory is fading since he's 5 now). His immune profile was worse than his brother's, but he also never showed titers. Boy his eyes brightened up on Valtrex, though. Titers never manifested, but the results of Valtrex were rapidly visible. Dr G said that we may not know what virus it was, since there are also other HHV viruses like 7 & 8 and probably 9 but that there isn't testing available for them yet. Labs just don't always show a significant pattern, which is why this 'disorder' has been so difficult for the medical system to recognize as a disease process. Only the progress in neuroimmune science in CFS and autoimmunity and the new knowledge of cytokines, etc really starts to explain what is happening. It's just still so new that widespread knowledge is slow to come. It's that " paridigm shift " that has to take place for everyone to come to accept that this is a disease process and not a developmental disorder. --- Caroline Glover <sfglover@...> wrote: > , > > My son has NEVER had high titers, and Dr. G has had > him on either Valtrex or > Famvir for over 4 years. > > In my son's case it was hypotonia (low muscle tone) > plus was a viral pattern > in the blood work... wish I could remember what the > pattern was but I can't > explain it in detail. I know his red cells are > always a smidge low but > there's more to it than that. > > On Valtrex my son's muscle tone NORMALIZED and he > began to have normal > reflexes. This was all documented by a pediatric > specialist who had seen > him since he was about two (prescribed his > orthotics, therapy, etc.) and has > monitored him ever since. She was so shocked... I > remember the look on her > face the day she realized he had normal reflexes. > She said " This just > doesn't happen! " . She immediately called Dr. > Goldberg... she has been very > impressed with the progress both of my boys have > made. She is, needless to > say, always very interested to hear what Dr. > Goldberg is up to when we visit > her office. > > When my son was a baby, our pediatrician told me he > might never walk... now > he is in the " normal " range for large motor skills. > He is is still quite > uncoordinated but doesn't qualify for therapy > anymore. > > I have heard of other cases where patients of Dr. > Goldberg have had their > muscle tone normalize. In fact another son of mine > had an excellent > improvement in that area as well under Dr. G's care > (he was on Famvir). > > Caroline > > > > From: " K. Fischer " <elfischer@...> > > Reply-< > > > Date: Tue, 13 Jun 2006 20:18:13 -0500 > > < > > > Subject: RE: Re: A gentle reminder > > > > Michele: > > > > If a child doesn't have titers, what markers would > suggest a trial of it > > anyway? Just curious. > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Can someone please exaggerate on the idea of anti-virals helping with low muscle tone? My son also has low muscle tone... thought it was just something he was going to have to live with. We are very excited about seeing Dr. G, in July, for the first time. I'm excited to think that his muscle tone has a chance of improvement. I'm most looking forward to helping my son be able to speak... I'm getting very excited about what progress my son can make under Dr. G's care. Thanks- --- Rhoda Boyd <rboyd@...> wrote: > Caroline, we had the same thing. > > My son didn't have high titers either and was always > super healthy, but he had low muscle tone. When Dr. > G put him on an anti-viral his muscle tone improved > dramatically. His OT and our family doctor were both > very impressed. You should see him now. He hasn't > been on an anti-viral for over a year and he has the > most muscular legs (I think from all that jumping on > the tampoline). I wish mine were as lean and > well-defined as his! > > Rhoda > > > RE: Re: A gentle reminder > > > > Michele: > > > > If a child doesn't have titers, what markers > would suggest a trial of it > > anyway? Just curious. > > > > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Hi ! It's a mystery to me how the anti-virals helped with my son's low muscle tone. All I know is that the month before we went to see Dr. G our OT was telling me that my son may take a few years to get " jumping " . My daugher would jump on the couch to music and my son would just stand there. Sometimes he would semi-bend his legs a bit. He wanted to jump too but he just didn't know how to make his legs work that way. Shortly after starting an anti-viral he became much more active and started jumping no problem. He also improved in other physical areas (e.g. my OT would try to roll him backward on a ball and he would not bend the way he was supposed to -- I specifically remember some head/neck issue and how he wouldn't move appropriately/tuck his head in when she tried to roll him forward or backwards). I remember she was amazed at how quickly all of those types of things resolved after he started on an anti-viral. We are far from " fixed " on this end, but I do know that the anti-viral worked miracles on that area for my son. Good luck. Rhoda RE: Re: A gentle reminder > > > > Michele: > > > > If a child doesn't have titers, what markers > would suggest a trial of it > > anyway? Just curious. > > > > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 , Our experience was similar to Rhoda's... I remember taking my son to physical therapy for a session (early on when we had just started with Dr. Goldberg) and we worked on catching the ball... it had been the same way for years... my son would always bring his hands together too late to catch the ball. The NEXT session, he GOT IT. He could catch the ball! There was no learning curve... it was like... he couldn't do it, and then... he could do it. He is not a fantastic catcher, but compared to where he was before, it was amazing. I wish I knew what happened. I think a lot about kids with hypotonia... how many would respond to antivirals? One thing I feel I should mention... my son did have a normal MRI... no damage shown on that. If there had been damage, instead of calling it " benign congenital hypotonia " I believe it would have been called Cerebral Palsy. I'm sure the gains tied in with the fact that (as I mentioned in my earlier post) his reflexes had kicked in. Something happened to allow his brain and body to communicate better. I hope you have the same experience of improvement. Caroline > From: Curtis and Hackler <thehacks@...> > Reply-< > > Date: Wed, 14 Jun 2006 10:52:18 -0700 (PDT) > < > > Subject: Re: Re: Viral Clues > > Can someone please exaggerate on the idea of > anti-virals helping with low muscle tone? My son also > has low muscle tone... thought it was just something > he was going to have to live with. We are very > excited about seeing Dr. G, in July, for the first > time. > > I'm excited to think that his muscle tone has a chance > of improvement. I'm most looking forward to helping > my son be able to speak... I'm getting very excited > about what progress my son can make under Dr. G's > care. > > Thanks- Quote Link to comment Share on other sites More sharing options...
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