Guest guest Posted January 14, 2013 Report Share Posted January 14, 2013 My 6 YO daughter is a non-responder to the DAN biomedical treatment, which she has being doing for 2 and a half years. Including B-12 shots, Voltrex, and anti-yeast, with no gains. She says only a few words to ask for water, food, crackers, to take a bath, etc. She is very calm, happy, has good eye contact, and she loves to touch, hug, kiss, and being touched, hugged and kissed.It's been 7 months that she plays with her saliva a lot.I just spoke with her DAN doctor, and told him I am ready to quit the treatment. He said since she will be still on the GFCFSF diet, I should also keep her on:CalciumCod Liver OilIronVit DVit EZincHe also recommended me to double her Deplin (she took it once a day for more than a year with no real gains) for three weeks and see if her verbal skills improve with that.He said he only treats parasites when kids have severe GI problems. She never had any GI problems.Last, he recommended IV-IG. He said that since she is a non-responder, and she regressed when she was 30 months old, she might be a good candidate for that. But I think it's way too invasive, there are several side effects, such as dizziness and headaches... I am not really willing to try it with my little girl.Any opinions?Thanks!Xexa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2013 Report Share Posted January 14, 2013 The spitting and playing with saliva for my son had to do with yeast and diflucan helped with that. You did not mention what antifungal you were using but for us nystatin did not work but diflucan did. My son was also a non responder and around age 12 he began to become anxious, self injurious and aggressive to others. By age 14 we had no choice but to try IVIG which has really helped him. It is very tough to get covered by insurance. My son is in his second year of IVIG and now at a very high dose but he is making slow steady progress. All aggression and self injurious behaviors are gone. Have you run a very thorough viral/bacterial panel. Looke for strep, pneumonia, lyme, EBV, herpes, mono.....and everything else. The lyme panel must be run thru IGENEX Labs as the ones run thru tradional labs like Quest have many false negatives. To: MB12Valtrex Yahoo Group <mb12valtrex > Sent: Monday, January 14, 2013 10:54 AM Subject: IV-IG Opinions My 6 YO daughter is a non-responder to the DAN biomedical treatment, which she has being doing for 2 and a half years. Including B-12 shots, Voltrex, and anti-yeast, with no gains. She says only a few words to ask for water, food, crackers, to take a bath, etc. She is very calm, happy, has good eye contact, and she loves to touch, hug, kiss, and being touched, hugged and kissed.It's been 7 months that she plays with her saliva a lot.I just spoke with her DAN doctor, and told him I am ready to quit the treatment. He said since she will be still on the GFCFSF diet, I should also keep her on:CalciumCod Liver OilIronVit DVit EZincHe also recommended me to double her Deplin (she took it once a day for more than a year with no real gains) for three weeks and see if her verbal skills improve with that.He said he only treats parasites when kids have severe GI problems. She never had any GI problems.Last, he recommended IV-IG. He said that since she is a non-responder, and she regressed when she was 30 months old, she might be a good candidate for that. But I think it's way too invasive, there are several side effects, such as dizziness and headaches... I am not really willing to try it with my little girl.Any opinions?Thanks!Xexa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2013 Report Share Posted January 14, 2013 Hiya, Have you looked into Yasko testing? I understand she has had a lot success with kids who have been non responders to other treatments. Kerry. Sent from my iPad My 6 YO daughter is a non-responder to the DAN biomedical treatment, which she has being doing for 2 and a half years. Including B-12 shots, Voltrex, and anti-yeast, with no gains. She says only a few words to ask for water, food, crackers, to take a bath, etc. She is very calm, happy, has good eye contact, and she loves to touch, hug, kiss, and being touched, hugged and kissed.It's been 7 months that she plays with her saliva a lot.I just spoke with her DAN doctor, and told him I am ready to quit the treatment. He said since she will be still on the GFCFSF diet, I should also keep her on:CalciumCod Liver OilIronVit DVit EZincHe also recommended me to double her Deplin (she took it once a day for more than a year with no real gains) for three weeks and see if her verbal skills improve with that.He said he only treats parasites when kids have severe GI problems. She never had any GI problems.Last, he recommended IV-IG. He said that since she is a non-responder, and she regressewhen she was 30 months old, she might be a good candidate for that. But I think it's way too invasive, there are several side effects, such as dizziness and headaches... I am not really willing to try it with my little girl.Any opinions?Thanks!Xexa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2013 Report Share Posted January 15, 2013 Has she ever been worked up for immune dif.? 25 percent of all asd chlidren have one. If she has that IVIG would be the treatment for that. IVIG does have risks but my son had HUGE gains with it.Sent from my iPad Hiya, Have you looked into Yasko testing? I understand she has had a lot success with kids who have been non responders to other treatments. Kerry. Sent from my iPad My 6 YO daughter is a non-responder to the DAN biomedical treatment, which she has being doing for 2 and a half years. Including B-12 shots, Voltrex, and anti-yeast, with no gains. She says only a few words to ask for water, food, crackers, to take a bath, etc. She is very calm, happy, has good eye contact, and she loves to touch, hug, kiss, and being touched, hugged and kissed.It's been 7 months that she plays with her saliva a lot.I just spoke with her DAN doctor, and told him I am ready to quit the treatment. He said since she will be still on the GFCFSF diet, I should also keep her on:CalciumCod Liver OilIronVit DVit EZincHe also recommended me to double her Deplin (she took it once a day for more than a year with no real gains) for three weeks and see if her verbal skills improve with that.He said he only treats parasites when kids have severe GI problems. She never had any GI problems.Last, he recommended IV-IG. He said that since she is a non-responder, and she regressewhen she was 30 months old, she might be a good candidate for that. But I think it's way too invasive, there are several side effects, such as dizziness and headaches... I am not really willing to try it with my little girl.Any opinions?Thanks!Xexa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2013 Report Share Posted January 15, 2013 - how many IVIG's did you do and what gains have you seen?ThanksRuthSent from my iPhone Has she ever been worked up for immune dif.? 25 percent of all asd chlidren have one. If she has that IVIG would be the treatment for that. IVIG does have risks but my son had HUGE gains with it.Sent from my iPad Hiya, Have you looked into Yasko testing? I understand she has had a lot success with kids who have been non responders to other treatments. Kerry. Sent from my iPad My 6 YO daughter is a non-responder to the DAN biomedical treatment, which she has being doing for 2 and a half years. Including B-12 shots, Voltrex, and anti-yeast, with no gains. She says only a few words to ask for water, food, crackers, to take a bath, etc. She is very calm, happy, has good eye contact, and she loves to touch, hug, kiss, and being touched, hugged and kissed.It's been 7 months that she plays with her saliva a lot.I just spoke with her DAN doctor, and told him I am ready to quit the treatment. He said since she will be still on the GFCFSF diet, I should also keep her on:CalciumCod Liver OilIronVit DVit EZincHe also recommended me to double her Deplin (she took it once a day for more than a year with no real gains) for three weeks and see if her verbal skills improve with that.He said he only treats parasites when kids have severe GI problems. She never had any GI problems.Last, he recommended IV-IG. He said that since she is a non-responder, and she regressewhen she was 30 months old, she might be a good candidate for that. But I think it's way too invasive, there are several side effects, such as dizziness and headaches... I am not really willing to try it with my little girl.Any opinions?Thanks!Xexa Quote Link to comment Share on other sites More sharing options...
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