Santi

I plan to start my son on melatonin in the evenings 1-2mg per his doc (age 7) . Does anyone know of a good brand for kids? Some bottles say only use on adults. Andrea

My 5 year old has classic OCD. He has to touch things twice (both sides), taps people on the head, repeats words and phrases, etc. I am wondering what the best way to handle this. Do I ignore or bring attention to what he is doing in a nice way and tell him its not appropriate? Andrea

Hi Faith, sorry I did leave out the gut piece. My son's stools have always been soft and light, and sometimes runny. Right now they are quite runny while on abx. It was also runny on probiotics. When I took him off probiotics it became more solid again but still light...what a nice conversation piece. Anyway I'm wondering if another abx would be better for him??? But I may just need to face the fact that he really isn't PANDAS. Andrea

My son does some similar stuff. He actually has a hard time with clothes. Sometimes he will wear the same clothes (no socks or underwear) for a week or two. He has meltdowns if I wash his clothes-I can only do this on weekends. He throws shoes down the street gutter and on neighbors roof tops. Sometimes he cuts up his clothes. They must be oversized. Other times he can handle underwear and socks and he starts piling on the clothes like your son even when it is hot outside and he has no problems. I think its a sensory thing. Andrea

Hi Faith, Our first run on Azith 140mg was great. We saw improvement the next day. My son had a great 1-2 weeks then we took him off (just a trial). Then we did 500mg and yes his tics got a lot worse so we took him off after about 10 days and they got better. Its been about 6 weeks and I decided to try again because he is having severe meltdowns (psychotic-like) where he really doesn't know what he is doing and increased tics both vocal and motor (haven't seen vocal in a while). I started 250mg Azith. and the tics about the same and not as many meltdowns but they are still there, other behaviors are ok (but we do have a high tolerance). I'm still keeping fingers crossed. Andrea

So I started 250mg Azithro with my son. I'm interested in hearing if your child's symptoms got worse before they got better or if they got better right away when starting abx. We are on our 3rd day and he is still having severe meltdowns. I'm still hopeful though. Andrea

Hi DC Mom, Any way to find out if it will be recorded? I'm in SF and would love to be there. Andrea

A few years back my eosinophil were high during a time I was having stomach pains (peptic ulcer) which was treated. Now it is fine. Andrea

Thanks I'll try to find in health food store. Andrea Thanks Stephanie. I will try it. Andrea

Thanks I'll try to find in health food store. Andrea

My son tested positive for Myco P. Dr. K said it takes a long time to get rid of it. my son still tested positive after treatment with 500mg azith. Andrea Andrea- By testing positive, was that IgM. IgG or both positive. Did Dr. K treat it? Did you have IVIG with him? I am curious what Dr. K is doing with the positive cases-particularly the high IgG and negative IgM. Dawn Hi Dawn, interesting that you ask. Dr. K recommended testing him for Myco P due to my son's aggression and he tested positive with IGM and negative with IGG. I told Dr. K and all he said was lets make a note of it. He did not recommended treating it???? However, since my son is having bad days, I decided to start him on 250mg of Azith and see where it takes him. Andrea

He was unclear...just said "a long time". Maybe 30 days will do it. Andrea

I just have to ask...how are your son's PANDAS symptoms while he has a fever? My daughter seldom got a fever, but when she did...it was like a vacation from PANDAS! I do hope you son gets feeling better gut bugs are not nice! What is it about the fevers that is so calming? When my son is getting sick, his behaviors are really good. Andrea

We have never tried a probiotic with strep in it, as I am literally scared to death of "anything strep" at this point! The probiotic that we use is Klaire Ther-Biotic Detox Support. It has 50+ billion CFUs & no strep. - Karen Stephanie, I just looked at all the yogurts in our house and THEY ALL CONTAIN STREP! My son eats sooooooo much of this. Please explain this strep thing to me. How can they put strep in food? Andrea

My son tested positive for Myco P. Dr. K said it takes a long time to get rid of it. my son still tested positive after treatment with 500mg azith. Andrea

I just read your post. My child tested positive for IGM Myco P. Is Biaxin the way to go? Or can I use Azith or Augmentin? How is your child doing now? Andrea

Thanks for the lead, sounds good. My son did test positive for MP but negative for Lyme. Andrea

That's a good question. Why would this be overlooked? He told me to repeat the IGA in about 2 weeks. Andrea

Dr. K told me that unfortunately its an ABSOLUTE CONTRAINDICATION for possible IVIG treatment. Have you heard about any allergies to penicillin with this low level IGA? Andrea Well, I'm sure he knows better than me! What does he do with kids who are IgA deficient- surely you're not the first. The literature says that IgA deficiency is the most common immune deficiency. I don't know. I'm very new to all of this. I would ask Dr. K if he recommends doing an Immunological Panel (IGA, IGG and IGM) before the IVIG. He did not mention it to me even though it sounds like its critical to do before the IVIG. Andrea

Dr. K told me that unfortunately its an ABSOLUTE CONTRAINDICATION for possible IVIG treatment. Have you heard about any allergies to penicillin with this low level IGA? Andrea Well, I'm sure he knows better than me! What does he do with kids who are IgA deficient- surely you're not the first. The literature says that IgA deficiency is the most common immune deficiency. I don't know. I'm very new to all of this.

Dr. K told me that unfortunately its an ABSOLUTE CONTRAINDICATION for possible IVIG treatment. Have you heard about any allergies to penicillin with this low level IGA? Andrea

Dr. K diagnosed my son with PANDAS (not totally convinced yet need to do some more careful observations). However, I did an immunological workup and found out that my son's IGA level is VERY LOW <6 (range 27-196) also his IGG is HIGH 1640 (range 600-1400), IGM OK. Does anyone have any experience with these antibodies? What else can the low IGA mean in terms of PANDAS/PITANDS? Andrea

What the school is doing is a bunch of BS. How dare them isolate your child and make her reearn the table and chair. When my son started school, they painted a big square in front of his portable to sit in when he is not acting appropriately. I told the principal that "I forbid them to do this" and then I drove directly to our attorney. I never had to bring my attorney to an IEP but just having her on board changed the school's attitude to a more positive one. Good luck. Andrea

My son had a horrible week at home and school last week. Coincidentally, there was a case of strep at school and home. I have sinced treated my bacterial infection and his behaviors are better. When a child with PANDAS is not infected but he/she is exposed to someone who is and responds negatively, how long does this exasberation last? I know it varies with kids but I'm just taking a poll. Andrea