Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Hi Everyone. I haven't posted in quite sometime, but would love some feedback from everyone. My sons Logan(4) and (3) have been on Valtrex since the end of November 2005. They are both also on the GF/CF/SF diet, daily MB12 shots, sublingual B12, many supplements,yucca has helped a lot with ammonia toxicity, BH4, oral EDTA, diflucan and RNA. Over the past 8 months we are we have been truly blessed to have seen substantial gains in both of our boys. We are very thankful everyday for their gains. Logan is sometimes a little socially quirky and a little hyper, but acts the way that I hoped he would if he recovered. He initiates imaginative play, asks me questions, initiates conversations and plays well with other kids. He is reading at a 2nd grade level and starts Kdg in the fall. He is still very fragile and takes many supplements to function at this level. Logan is still on the Valtrex. I am afraid to take him off. He had high HHV6 level and that is why we put him on it in the first place. makes fantastic eye contact, laughs, smiles, initiates play with others, plays imaginatively with dolls, knows his letters and numbers and is now repeating words. His attention span has increased dramatically. His OT is now calling him " modulated " made huge social gains with Valtrex. We use PRT with him and says a word to request an object if we require him to do so. He is also begining to initiate this on his own. His language is difficult to understand, but is improving every day. Here is the thing. We went out of town this weekend and my parents watched our boys. did not have his Valtrex for 5 days. He is doing very well even though he is not taking his Valtrex. He is talking up a storm and babbling to himself and speaking to us. I am wondering if he made all of the gains that he is going to make from Valtrex and question if I should maybe take him off for a little while or permanently. What do you think? At what point are most parents stopping the Valtrex? It has been fantastic for him, but since he has been doing so well without it during the past 5 days I am questioning if a break may give his body a rest. Stan what do you think? When and how did you decide to stop? Thanks so much. I really would love feedback. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 It's certainly nice to have this discussion based on the progress your children have made. We stopped when Ethan's gains came to a halt. You could tell his progression leveled off and even was going backwards a bit. I took him off everything but diet and then did an OATs test to see where he was metabolicly and floraly (nice words, sorry). Anyway, by the time we did the OATs testing he regained his progression and I at that point decided just to keep him on the vitamins the OATS test suggested which were just a handful and that was the last time we did meds of any sort. That's over a year ago. He was on Valtrex for 9 months. So.... is it time to stop.... I think it's based on how stable his immune system is today. If you feel he's very healthy and that you want to take a break after this many months... you should go with your instincts. If it was just a few months, I would encourage you to keep going since we have seen people come off after a few months and we do have reports of the kids slipping backwards... but after 8 months if your child is looking healthy and you feel the therapy may have run its course... why not try taking a break and see what happens and if you see any loss of gains you could jump right back on... just keep some ready just in case. Congrats and good luck. Let us know what you do and what happens. - Stan > > Hi Everyone. I haven't posted in quite sometime, but would love some > feedback from everyone. My sons Logan(4) and (3) have been on > Valtrex since the end of November 2005. They are both also on the > GF/CF/SF diet, daily MB12 shots, sublingual B12, many supplements,yucca > has helped a lot with ammonia toxicity, BH4, oral EDTA, diflucan and > RNA. Over the past 8 months we are we have been truly blessed to have > seen substantial gains in both of our boys. We are very thankful > everyday for their gains. > Logan is sometimes a little socially quirky and a little hyper, but > acts the way that I hoped he would if he recovered. He initiates > imaginative play, asks me questions, initiates conversations and plays > well with other kids. He is reading at a 2nd grade level and starts > Kdg in the fall. He is still very fragile and takes many supplements > to function at this level. Logan is still on the Valtrex. I am afraid > to take him off. He had high HHV6 level and that is why we put him on > it in the first place. > makes fantastic eye contact, laughs, smiles, initiates play with > others, plays imaginatively with dolls, knows his letters and numbers > and is now repeating words. His attention span has increased > dramatically. His OT is now calling him " modulated " made huge > social gains with Valtrex. We use PRT with him and says a word to > request an object if we require him to do so. He is also begining to > initiate this on his own. His language is difficult to understand, > but is improving every day. > Here is the thing. We went out of town this weekend and my parents > watched our boys. did not have his Valtrex for 5 days. He is > doing very well even though he is not taking his Valtrex. He is > talking up a storm and babbling to himself and speaking to us. I am > wondering if he made all of the gains that he is going to make from > Valtrex and question if I should maybe take him off for a little while > or permanently. What do you think? At what point are most parents > stopping the Valtrex? It has been fantastic for him, but since he has > been doing so well without it during the past 5 days I am questioning > if a break may give his body a rest. Stan what do you think? When and > how did you decide to stop? Thanks so much. I really would love > feedback. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 My son (asd now 3.11yrs) began valtrex at 26 mos. We noted a huge gain in gross motor planning, as well as sensory issues (FWIW, my other ADHD son then 10 lost his dx. completely on valtrex after 6 mos.) We pulled my ASD son's valtrex a few mos. ago, after 18 mos. of treatment. I reintroduced after 1 mos.off, not b/c I saw regression, but b/c I was curious. Within 6 days he had a horrific herpes rash on his buttock and lower thigh. I was stunned. Even though we saw no outward sign, the rash indicated he still needed the valtrex... Now, to pick you brain... the BH4 has me very curious.. could you email me off list if preferable and tell me why you started, what you saw, and how you get it. My son will be 4 this month and is non verbal. Though every biomed effort shows small progress, nothing seems to wow him, especially in language, we have been on the verge with several approximations and good babble for a year with no progress... I heard BH4 helps with language... much thanks, - In mb12 valtrex , " justinandlogansmom " <jeaninefrandsen@...> wrote: > > Hi Everyone. I haven't posted in quite sometime, but would love some > feedback from everyone. My sons Logan(4) and (3) have been on > Valtrex since the end of November 2005. They are both also on the > GF/CF/SF diet, daily MB12 shots, sublingual B12, many supplements,yucca > has helped a lot with ammonia toxicity, BH4, oral EDTA, diflucan and > RNA. Over the past 8 months we are we have been truly blessed to have > seen substantial gains in both of our boys. We are very thankful > everyday for their gains. > Logan is sometimes a little socially quirky and a little hyper, but > acts the way that I hoped he would if he recovered. He initiates > imaginative play, asks me questions, initiates conversations and plays > well with other kids. He is reading at a 2nd grade level and starts > Kdg in the fall. He is still very fragile and takes many supplements > to function at this level. Logan is still on the Valtrex. I am afraid > to take him off. He had high HHV6 level and that is why we put him on > it in the first place. > makes fantastic eye contact, laughs, smiles, initiates play with > others, plays imaginatively with dolls, knows his letters and numbers > and is now repeating words. His attention span has increased > dramatically. His OT is now calling him " modulated " made huge > social gains with Valtrex. We use PRT with him and says a word to > request an object if we require him to do so. He is also begining to > initiate this on his own. His language is difficult to understand, > but is improving every day. > Here is the thing. We went out of town this weekend and my parents > watched our boys. did not have his Valtrex for 5 days. He is > doing very well even though he is not taking his Valtrex. He is > talking up a storm and babbling to himself and speaking to us. I am > wondering if he made all of the gains that he is going to make from > Valtrex and question if I should maybe take him off for a little while > or permanently. What do you think? At what point are most parents > stopping the Valtrex? It has been fantastic for him, but since he has > been doing so well without it during the past 5 days I am questioning > if a break may give his body a rest. Stan what do you think? When and > how did you decide to stop? Thanks so much. I really would love > feedback. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 , Just out of curiousity: Has your child ever tested for a virus? Just curious if your child is one of those who doesn't seem to have a typical herpes type of virus... my son never did. Secondly, are you doing antifungals at the same time as Valtrex. If not, this could be the reason you had this flare up again. - Stan > > > > Hi Everyone. I haven't posted in quite sometime, but would love > some > > feedback from everyone. My sons Logan(4) and (3) have been > on > > Valtrex since the end of November 2005. They are both also on the > > GF/CF/SF diet, daily MB12 shots, sublingual B12, many > supplements,yucca > > has helped a lot with ammonia toxicity, BH4, oral EDTA, diflucan > and > > RNA. Over the past 8 months we are we have been truly blessed to > have > > seen substantial gains in both of our boys. We are very thankful > > everyday for their gains. > > Logan is sometimes a little socially quirky and a little hyper, > but > > acts the way that I hoped he would if he recovered. He initiates > > imaginative play, asks me questions, initiates conversations and > plays > > well with other kids. He is reading at a 2nd grade level and > starts > > Kdg in the fall. He is still very fragile and takes many > supplements > > to function at this level. Logan is still on the Valtrex. I am > afraid > > to take him off. He had high HHV6 level and that is why we put > him on > > it in the first place. > > makes fantastic eye contact, laughs, smiles, initiates play > with > > others, plays imaginatively with dolls, knows his letters and > numbers > > and is now repeating words. His attention span has increased > > dramatically. His OT is now calling him " modulated " made > huge > > social gains with Valtrex. We use PRT with him and says a word to > > request an object if we require him to do so. He is also begining > to > > initiate this on his own. His language is difficult to > understand, > > but is improving every day. > > Here is the thing. We went out of town this weekend and my parents > > watched our boys. did not have his Valtrex for 5 days. He > is > > doing very well even though he is not taking his Valtrex. He is > > talking up a storm and babbling to himself and speaking to us. I > am > > wondering if he made all of the gains that he is going to make > from > > Valtrex and question if I should maybe take him off for a little > while > > or permanently. What do you think? At what point are most > parents > > stopping the Valtrex? It has been fantastic for him, but since he > has > > been doing so well without it during the past 5 days I am > questioning > > if a break may give his body a rest. Stan what do you think? > When and > > how did you decide to stop? Thanks so much. I really would love > > feedback. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 I just thought I would post again about . He has been off the Valtrex for a full week now after using it for 8 months and today was probably his best day ever. He was singing in the back seat on the way home from speech. At preschool I watched through the glass as he was trying to make other kids laugh. He was all smiles. He said all of the letters to me as I held up flash cards today. He even spelled his name at music therapy a few days ago. He was trying to initiate some type of conversation while we were driving home saying yellow and laughing hysterically. His articulation is very bad, but I'm just thrilled to have any language from this child who barely babbled before we started MB12 and valtrex. He now labels any word that you say. If he can't make the sound he at least tries. I'll keep everyone posted because my biggest question with valtrex was how long I would have to keep giving it to him. I am feeling very hopeful that 8 months may have done the trick. I am going to let his body rest for a couple of weeks and then try another high dose vitamin A (we did one in Jan and saw gains from it) and then we will try Valtrex again. If I don't get a rash or any reaction I think I'll keep him off. What do you think? I 'd love the feedback as this is a very tough decision. Thanks : ) Jeanine > > > > > > Hi Everyone. I haven't posted in quite sometime, but would love > > some > > > feedback from everyone. My sons Logan(4) and (3) have been > > on > > > Valtrex since the end of November 2005. They are both also on the > > > GF/CF/SF diet, daily MB12 shots, sublingual B12, many > > supplements,yucca > > > has helped a lot with ammonia toxicity, BH4, oral EDTA, diflucan > > and > > > RNA. Over the past 8 months we are we have been truly blessed to > > have > > > seen substantial gains in both of our boys. We are very thankful > > > everyday for their gains. > > > Logan is sometimes a little socially quirky and a little hyper, > > but > > > acts the way that I hoped he would if he recovered. He initiates > > > imaginative play, asks me questions, initiates conversations and > > plays > > > well with other kids. He is reading at a 2nd grade level and > > starts > > > Kdg in the fall. He is still very fragile and takes many > > supplements > > > to function at this level. Logan is still on the Valtrex. I am > > afraid > > > to take him off. He had high HHV6 level and that is why we put > > him on > > > it in the first place. > > > makes fantastic eye contact, laughs, smiles, initiates play > > with > > > others, plays imaginatively with dolls, knows his letters and > > numbers > > > and is now repeating words. His attention span has increased > > > dramatically. His OT is now calling him " modulated " made > > huge > > > social gains with Valtrex. We use PRT with him and says a word to > > > request an object if we require him to do so. He is also begining > > to > > > initiate this on his own. His language is difficult to > > understand, > > > but is improving every day. > > > Here is the thing. We went out of town this weekend and my parents > > > watched our boys. did not have his Valtrex for 5 days. He > > is > > > doing very well even though he is not taking his Valtrex. He is > > > talking up a storm and babbling to himself and speaking to us. I > > am > > > wondering if he made all of the gains that he is going to make > > from > > > Valtrex and question if I should maybe take him off for a little > > while > > > or permanently. What do you think? At what point are most > > parents > > > stopping the Valtrex? It has been fantastic for him, but since he > > has > > > been doing so well without it during the past 5 days I am > > questioning > > > if a break may give his body a rest. Stan what do you think? > > When and > > > how did you decide to stop? Thanks so much. I really would love > > > feedback. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I decided to try the high dose vitamin A on both of my boys. Their last treatment was in Jan. Logan had no reaction. , who I have had off of valtrex now for 10 days after 8 months of treatment, did however have a reaction. After dose 1 he had a few very small pimple looking dots with white centers above his lip. You would have to look for them to notice them. After dose two his lips got red w/ a few red bumps on them for about half of the day. Then tonight after his bath I noticed a small red circle with little bumps in it on his inner thigh! He had this the last time he had the vitamin A and had quite a few of these during the first few months of valtrex! I think it is pretty apparent that he still has a viral load. I think we'll go back on the valtrex again. I don't want to let this virus ,that we worked so hard to supress, come back. The good news is that has done fantastic while off of the valtrex which lends hope to those of us who have our kiddos on the stuff wondering if we'll ever be able to go off of it. I think I'll leave him on it for a few more months. I'll post when we dose him again with valtrex to let you know if we have any type of regressive healing after going off of it for a short time. > > > > > > > > > > Hi Everyone. I haven't posted in quite sometime, but would > > love > > > > some > > > > > feedback from everyone. My sons Logan(4) and (3) have > > been > > > > on > > > > > Valtrex since the end of November 2005. They are both also on > > the > > > > > GF/CF/SF diet, daily MB12 shots, sublingual B12, many > > > > supplements,yucca > > > > > has helped a lot with ammonia toxicity, BH4, oral EDTA, > > diflucan > > > > and > > > > > RNA. Over the past 8 months we are we have been truly blessed > > to > > > > have > > > > > seen substantial gains in both of our boys. We are very > > thankful > > > > > everyday for their gains. > > > > > Logan is sometimes a little socially quirky and a little hyper, > > > > but > > > > > acts the way that I hoped he would if he recovered. He > > initiates > > > > > imaginative play, asks me questions, initiates conversations > > and > > > > plays > > > > > well with other kids. He is reading at a 2nd grade level and > > > > starts > > > > > Kdg in the fall. He is still very fragile and takes many > > > > supplements > > > > > to function at this level. Logan is still on the Valtrex. I am > > > > afraid > > > > > to take him off. He had high HHV6 level and that is why we put > > > > him on > > > > > it in the first place. > > > > > makes fantastic eye contact, laughs, smiles, initiates > > play > > > > with > > > > > others, plays imaginatively with dolls, knows his letters and > > > > numbers > > > > > and is now repeating words. His attention span has increased > > > > > dramatically. His OT is now calling him " modulated " made > > > > huge > > > > > social gains with Valtrex. We use PRT with him and says a word > > to > > > > > request an object if we require him to do so. He is also > > begining > > > > to > > > > > initiate this on his own. His language is difficult to > > > > understand, > > > > > but is improving every day. > > > > > Here is the thing. We went out of town this weekend and my > > parents > > > > > watched our boys. did not have his Valtrex for 5 days. > > He > > > > is > > > > > doing very well even though he is not taking his Valtrex. He > > is > > > > > talking up a storm and babbling to himself and speaking to us. > > I > > > > am > > > > > wondering if he made all of the gains that he is going to make > > > > from > > > > > Valtrex and question if I should maybe take him off for a > > little > > > > while > > > > > or permanently. What do you think? At what point are most > > > > parents > > > > > stopping the Valtrex? It has been fantastic for him, but since > > he > > > > has > > > > > been doing so well without it during the past 5 days I am > > > > questioning > > > > > if a break may give his body a rest. Stan what do you think? > > > > When and > > > > > how did you decide to stop? Thanks so much. I really would > > love > > > > > feedback. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 I decided to try the high dose vitamin A on both of my boys. Their last treatment was in Jan. Logan had no reaction. , who I have had off of valtrex now for 10 days after 8 months of treatment, did however have a reaction. After dose 1 he had a few very small pimple looking dots with white centers above his lip. You would have to look for them to notice them. After dose two his lips got red w/ a few red bumps on them for about half of the day. Then tonight after his bath I noticed a small red circle with little bumps in it on his inner thigh! He had this the last time he had the vitamin A and had quite a few of these during the first few months of valtrex! I think it is pretty apparent that he still has a viral load. I think we'll go back on the valtrex again. I don't want to let this virus ,that we worked so hard to supress, come back. The good news is that has done fantastic while off of the valtrex which lends hope to those of us who have our kiddos on the stuff wondering if we'll ever be able to go off of it. I think I'll leave him on it for a few more months. I'll post when we dose him again with valtrex to let you know if we have any type of regressive healing after going off of it for a short time. > > > > > > > > > > Hi Everyone. I haven't posted in quite sometime, but would > > love > > > > some > > > > > feedback from everyone. My sons Logan(4) and (3) have > > been > > > > on > > > > > Valtrex since the end of November 2005. They are both also on > > the > > > > > GF/CF/SF diet, daily MB12 shots, sublingual B12, many > > > > supplements,yucca > > > > > has helped a lot with ammonia toxicity, BH4, oral EDTA, > > diflucan > > > > and > > > > > RNA. Over the past 8 months we are we have been truly blessed > > to > > > > have > > > > > seen substantial gains in both of our boys. We are very > > thankful > > > > > everyday for their gains. > > > > > Logan is sometimes a little socially quirky and a little hyper, > > > > but > > > > > acts the way that I hoped he would if he recovered. He > > initiates > > > > > imaginative play, asks me questions, initiates conversations > > and > > > > plays > > > > > well with other kids. He is reading at a 2nd grade level and > > > > starts > > > > > Kdg in the fall. He is still very fragile and takes many > > > > supplements > > > > > to function at this level. Logan is still on the Valtrex. I am > > > > afraid > > > > > to take him off. He had high HHV6 level and that is why we put > > > > him on > > > > > it in the first place. > > > > > makes fantastic eye contact, laughs, smiles, initiates > > play > > > > with > > > > > others, plays imaginatively with dolls, knows his letters and > > > > numbers > > > > > and is now repeating words. His attention span has increased > > > > > dramatically. His OT is now calling him " modulated " made > > > > huge > > > > > social gains with Valtrex. We use PRT with him and says a word > > to > > > > > request an object if we require him to do so. He is also > > begining > > > > to > > > > > initiate this on his own. His language is difficult to > > > > understand, > > > > > but is improving every day. > > > > > Here is the thing. We went out of town this weekend and my > > parents > > > > > watched our boys. did not have his Valtrex for 5 days. > > He > > > > is > > > > > doing very well even though he is not taking his Valtrex. He > > is > > > > > talking up a storm and babbling to himself and speaking to us. > > I > > > > am > > > > > wondering if he made all of the gains that he is going to make > > > > from > > > > > Valtrex and question if I should maybe take him off for a > > little > > > > while > > > > > or permanently. What do you think? At what point are most > > > > parents > > > > > stopping the Valtrex? It has been fantastic for him, but since > > he > > > > has > > > > > been doing so well without it during the past 5 days I am > > > > questioning > > > > > if a break may give his body a rest. Stan what do you think? > > > > When and > > > > > how did you decide to stop? Thanks so much. I really would > > love > > > > > feedback. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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