Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Ours dropped when we switched to Acyclovir but they've gone back up and I just got a call from Dr. G's telling me we are going back to Valtrex tomorrow. We've been doing gammastan the whole time so it hasn't made much of a difference here in titers. To be honest, I haven't seen anything negative or positive from gammastan. Dr. G says his immune panel is going up so I guess that could be from the gammastan but behaviorally or cognitively, I haven't seen much of a difference. Honestly, I think it just depends on the child. It's normal for the titers to go up and then drop but if they don't drop, it's probably time to think about switching. Have you talked to Dr. G about it? cheryl On Mar 25, 2008, at 7:26 PM, kavita_d_mallik wrote: > I have a similar situation to what Cheryl had earlier with her son. My > son's titers for HHV-6 has risen in the last 6 mts from 1:320 to > 1:640. > Scary, inspite of being on Valtrex for a whole year. Does this usually > happen? Does anyone know why and do they come down by change of anti- > viral or introduction of gammastan. Just taken a back by his latest > report. > rgds Kavita > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi Kavita, Cheryl, and others, Our son's HHV6 is also high, in fact it does not want to come down! We've tried, Famvir, Valtrex, Zovirex, Gammaglobulin injections, plus SSRI's, Nose Sprays, Allergy meds, and of course removed whole grains, dairy products, berries, tropical fruits, and dyes. My son will be 10 at the end of July, and we've been doing this since he was 4 & 1/2 with Dr. Goldberg. Even with the HHV6 not coming down, he has still made tremendous gains health wise and academically. He used to get up to 4 ear and sinus infections per month. He had ear tubes put in twice, his adnoids removed and was still getting sick. About the age of 8 & 1/2, he started improving, now is rare for him to get ear infections ( he just had one last week, because he got the flu). We just got his report card and although still behind his 3rd grade classmates ( his curriculum is being modified), he has made significant improvements in all areas, especially reading and comprehension, and social interactions. He has also improved in speech, at the age of 2 & 1/2 he only spoke about 45 words, they mostly were names of videos. Now he does carry a conversation and ill answer questions, but still prefers to talk about his movies, shows or books " video talking " . In addition to Dr. Goldberg's protocol, we also have him in Private Speech 2 hours a week, plus he gets 30 minutes of group speech and 30 minutes individual at school. He has a 1:1 aid all day in school, although she fades back in the classroom and helps the other kids as well, she mainly helps with social interaction during recess and lunch (he gets cranky when he's sick and not feeling well). He has a private tutor 3 times a week for one hour. I had mentioned to Dr. Goldberg that the tutor has a program (which they also have in the school classroom) called co-writer. It helps with writing skills, and she does the read naturally program with him as well. He gets 30 minutes of OT (Fine motor skills are still a weakness), at school, and 30 minutes of APE. We also get 5 hours of behaviour (ABA) combined with academics at home. The behaviour team wants to start fading out, they feel he does not need them any longer. They suggest more academic help (the curriculum is very tough!). So hang in there, although we don't see immediate results, our kids are improving! Cheryl is right when she says that every child is different, while some may improve faster than others, they are all slowly getting better. Thank you Marcia for always being positive and posting your son's recovery and progress, you and others on this list have helped during the difficult and bleak moments. God bless, Argie PS We just started our daughter with Dr. Goldberg. She is 12, a gate student with strait A's, and very sociable. She has always been constipated and used to get " eczema " on her face. I removed dairy about 5 years ago and she did improve. She tested very high as well for the HHV6 virus, she was starting to " daydream " and her mind wandering while in the classroom. She was always tired and could not concentrate. I just wish that I had started her on the protocol years ago! On Mar 25, 2008, at 8:31 PM, Cheryl Lowrance wrote: > Ours dropped when we switched to Acyclovir but they've gone back up > and I just got a call from Dr. G's telling me we are going back to > Valtrex tomorrow. We've been doing gammastan the whole time so it > hasn't made much of a difference here in titers. To be honest, I > haven't seen anything negative or positive from gammastan. Dr. G > says his immune panel is going up so I guess that could be from the > gammastan but behaviorally or cognitively, I haven't seen much of a > difference. > > Honestly, I think it just depends on the child. It's normal for the > titers to go up and then drop but if they don't drop, it's probably > time to think about switching. Have you talked to Dr. G about it? > > cheryl > > On Mar 25, 2008, at 7:26 PM, kavita_d_mallik wrote: > > > I have a similar situation to what Cheryl had earlier with her > son. My > > son's titers for HHV-6 has risen in the last 6 mts from 1:320 to > > 1:640. > > Scary, inspite of being on Valtrex for a whole year. Does this > usually > > happen? Does anyone know why and do they come down by change of > anti- > > viral or introduction of gammastan. Just taken a back by his latest > > report. > > rgds Kavita > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi Robyn, FYI, our daughter is doing very well with Dr. G's protocol. On Mar 26, 2008, at 11:00 AM, Robyn wrote: > Hi, Argie. > > I find the part in your post about your daughter very interesting. > Our middle son sees Dr. Goldberg (started in January) and was > recently started on Valtrex. Our older son, 9, was reading by himself > at the age of 3 and has always done extremely well in school until > about the end of the second grade. He was diagnosed with seizures and > he experienced the daydreaming episodes you mentioned. He, too, has > suffered with ezcema on his elbows,knees, ankles and most recently on > his eyelids. We took him off dairy and whole grains. He sees Dr. G > for the first time next week. I'm really hoping for some great > results for both boys. > > Thanks for sharing your story. > > Robyn > > > > > > > > > I have a similar situation to what Cheryl had earlier with her > > > son. My > > > > son's titers for HHV-6 has risen in the last 6 mts from 1:320 to > > > > 1:640. > > > > Scary, inspite of being on Valtrex for a whole year. Does this > > > usually > > > > happen? Does anyone know why and do they come down by change > of > > > anti- > > > > viral or introduction of gammastan. Just taken a back by his > latest > > > > report. > > > > rgds Kavita > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Thanks Argie for sharing, it gives us all hope. I just saw Autism : the musical by Kirby on hbo.com. I cried the whole time. Kavita Re: re: rising titers Hi Kavita, Cheryl, and others, Our son's HHV6 is also high, in fact it does not want to come down! We've tried, Famvir, Valtrex, Zovirex, Gammaglobulin injections, plus SSRI's, Nose Sprays, Allergy meds, and of course removed whole grains, dairy products, berries, tropical fruits, and dyes. My son will be 10 at the end of July, and we've been doing this since he was 4 & 1/2 with Dr. Goldberg. Even with the HHV6 not coming down, he has still made tremendous gains health wise and academically. He used to get up to 4 ear and sinus infections per month. He had ear tubes put in twice, his adnoids removed and was still getting sick. About the age of 8 & 1/2, he started improving, now is rare for him to get ear infections ( he just had one last week, because he got the flu). We just got his report card and although still behind his 3rd grade classmates ( his curriculum is being modified), he has made significant improvements in all areas, especially reading and comprehension, and social interactions. He has also improved in speech, at the age of 2 & 1/2 he only spoke about 45 words, they mostly were names of videos. Now he does carry a conversation and ill answer questions, but still prefers to talk about his movies, shows or books " video talking " . In addition to Dr. Goldberg's protocol, we also have him in Private Speech 2 hours a week, plus he gets 30 minutes of group speech and 30 minutes individual at school. He has a 1:1 aid all day in school, although she fades back in the classroom and helps the other kids as well, she mainly helps with social interaction during recess and lunch (he gets cranky when he's sick and not feeling well). He has a private tutor 3 times a week for one hour. I had mentioned to Dr. Goldberg that the tutor has a program (which they also have in the school classroom) called co-writer. It helps with writing skills, and she does the read naturally program with him as well. He gets 30 minutes of OT (Fine motor skills are still a weakness), at school, and 30 minutes of APE. We also get 5 hours of behaviour (ABA) combined with academics at home. The behaviour team wants to start fading out, they feel he does not need them any longer. They suggest more academic help (the curriculum is very tough!). So hang in there, although we don't see immediate results, our kids are improving! Cheryl is right when she says that every child is different, while some may improve faster than others, they are all slowly getting better. Thank you Marcia for always being positive and posting your son's recovery and progress, you and others on this list have helped during the difficult and bleak moments. God bless, Argie PS We just started our daughter with Dr. Goldberg. She is 12, a gate student with strait A's, and very sociable. She has always been constipated and used to get " eczema " on her face. I removed dairy about 5 years ago and she did improve. She tested very high as well for the HHV6 virus, she was starting to " daydream " and her mind wandering while in the classroom. She was always tired and could not concentrate. I just wish that I had started her on the protocol years ago! On Mar 25, 2008, at 8:31 PM, Cheryl Lowrance wrote: > Ours dropped when we switched to Acyclovir but they've gone back up > and I just got a call from Dr. G's telling me we are going back to > Valtrex tomorrow. We've been doing gammastan the whole time so it > hasn't made much of a difference here in titers. To be honest, I > haven't seen anything negative or positive from gammastan. Dr. G > says his immune panel is going up so I guess that could be from the > gammastan but behaviorally or cognitively, I haven't seen much of a > difference. > > Honestly, I think it just depends on the child. It's normal for the > titers to go up and then drop but if they don't drop, it's probably > time to think about switching. Have you talked to Dr. G about it? > > cheryl > > On Mar 25, 2008, at 7:26 PM, kavita_d_mallik wrote: > > > I have a similar situation to what Cheryl had earlier with her > son. My > > son's titers for HHV-6 has risen in the last 6 mts from 1:320 to > > 1:640. > > Scary, inspite of being on Valtrex for a whole year. Does this > usually > > happen? Does anyone know why and do they come down by change of > anti- > > viral or introduction of gammastan. Just taken a back by his latest > > report. > > rgds Kavita > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 At 12 could her hormones be changing and contributing to daydreaming? Kristy Re: re: rising titers Hi Kavita, Cheryl, and others, Our son's HHV6 is also high, in fact it does not want to come down! We've tried, Famvir, Valtrex, Zovirex, Gammaglobulin injections, plus SSRI's, Nose Sprays, Allergy meds, and of course removed whole grains, dairy products, berries, tropical fruits, and dyes. My son will be 10 at the end of July, and we've been doing this since he was 4 & 1/2 with Dr. Goldberg. Even with the HHV6 not coming down, he has still made tremendous gains health wise and academically. He used to get up to 4 ear and sinus infections per month. He had ear tubes put in twice, his adnoids removed and was still getting sick. About the age of 8 & 1/2, he started improving, now is rare for him to get ear infections ( he just had one last week, because he got the flu). We just got his report card and although still behind his 3rd grade classmates ( his curriculum is being modified), he has made significant improvements in all areas, especially reading and comprehension, and social interactions. He has also improved in speech, at the age of 2 & 1/2 he only spoke about 45 words, they mostly were names of videos. Now he does carry a conversation and ill answer questions, but still prefers to talk about his movies, shows or books " video talking " . In addition to Dr. Goldberg's protocol, we also have him in Private Speech 2 hours a week, plus he gets 30 minutes of group speech and 30 minutes individual at school. He has a 1:1 aid all day in school, although she fades back in the classroom and helps the other kids as well, she mainly helps with social interaction during recess and lunch (he gets cranky when he's sick and not feeling well). He has a private tutor 3 times a week for one hour. I had mentioned to Dr. Goldberg that the tutor has a program (which they also have in the school classroom) called co-writer. It helps with writing skills, and she does the read naturally program with him as well. He gets 30 minutes of OT (Fine motor skills are still a weakness), at school, and 30 minutes of APE. We also get 5 hours of behaviour (ABA) combined with academics at home. The behaviour team wants to start fading out, they feel he does not need them any longer. They suggest more academic help (the curriculum is very tough!). So hang in there, although we don't see immediate results, our kids are improving! Cheryl is right when she says that every child is different, while some may improve faster than others, they are all slowly getting better. Thank you Marcia for always being positive and posting your son's recovery and progress, you and others on this list have helped during the difficult and bleak moments. God bless, Argie PS We just started our daughter with Dr. Goldberg. She is 12, a gate student with strait A's, and very sociable. She has always been constipated and used to get " eczema " on her face. I removed dairy about 5 years ago and she did improve. She tested very high as well for the HHV6 virus, she was starting to " daydream " and her mind wandering while in the classroom. She was always tired and could not concentrate. I just wish that I had started her on the protocol years ago! On Mar 25, 2008, at 8:31 PM, Cheryl Lowrance wrote: > Ours dropped when we switched to Acyclovir but they've gone back up > and I just got a call from Dr. G's telling me we are going back to > Valtrex tomorrow. We've been doing gammastan the whole time so it > hasn't made much of a difference here in titers. To be honest, I > haven't seen anything negative or positive from gammastan. Dr. G > says his immune panel is going up so I guess that could be from the > gammastan but behaviorally or cognitively, I haven't seen much of a > difference. > > Honestly, I think it just depends on the child. It's normal for the > titers to go up and then drop but if they don't drop, it's probably > time to think about switching. Have you talked to Dr. G about it? > > cheryl > > On Mar 25, 2008, at 7:26 PM, kavita_d_mallik wrote: > > > I have a similar situation to what Cheryl had earlier with her > son. My > > son's titers for HHV-6 has risen in the last 6 mts from 1:320 to > > 1:640. > > Scary, inspite of being on Valtrex for a whole year. Does this > usually > > happen? Does anyone know why and do they come down by change of > anti- > > viral or introduction of gammastan. Just taken a back by his latest > > report. > > rgds Kavita > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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