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the same happened to our ds5. after the steroid taper, he got a stomach virus. his PANDAS got worse right away but the exacerbation did not last as long as it did before the taper. See if your son recovers faster and if his tics lessen in a few days.

our dd5 got sick with a stomach virus while on prednisone. it was up and down during the taper. then, few days after the infection, he started getting better. two weeks after the taper, he was fine, then, again, went south.

NIH study may be still looking for cases. see info at http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2011-M-0058.html

our kids's tests were all fine as well. you'll find that this is the case at times. I am not sure how to explain it except the obvious that there is no test for PANDAS yet. our dd9 ASO was at 1:360 at one point and that was it. In a simplistic view, if anti-inflammatory help -- and you can count abx as doing the work of anti-inflammatory -- the problem you are dealing with is auto-immune. whether you call it PANDAS or not seems to matter less. As with other auto-immune problems like arthritis, regiment is already established.

I am very happy for you.

dd does not have celiac, ds does have it. both have pandas.

Hi, Hope you all are hunkered down to enjoy all this beautiful snow! As you may or may not know my sister has chronic Lyme disease. Her disease was undiagnosed for over a year and now she is desperately trying to get appropriate and effective treatment. Unfortunately, the treatment guidelines for Lyme desperately need to be reformed. Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary. I hope you will consider signing this petition. Both my sister and I thank you!!! Hugs and be well, Martha https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX

Hi, Hope you all are hunkered down to enjoy all this beautiful snow! As you may or may not know my sister has chronic Lyme disease. Her disease was undiagnosed for over a year and now she is desperately trying to get appropriate and effective treatment. Unfortunately, the treatment guidelines for Lyme desperately need to be reformed. Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary. I hope you will consider signing this petition. Both my sister and I thank you!!! Hugs and be well, Martha https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX

if I did not grow up under poor conditions in a third world country, I could bring myself to believe the hypothesis. I had pets, drunk row milk, ate "young" cheese, raw eggs, and whatnot, and still had autoimmune problems. There were kids round me who had asthma and all sorts of autoimmune issues. Back to the drawing board, I guess.

we have both mutations. anyway you look at it, supplements are expensive. question is just how expensive. we started with very small doses of mb12 vitamin from Puritan Pride (read, cheap). Had effect immediately. Actually, too much effect. now, we are trying to find the right balance. Seeking Health multivitamin seems to work for both kids. Half a tablet a day. which is much much much less than what your DAN is suggesting.

our dd9 has RLS and PANDAS. Iron and melatonin help her but we are still seeing it on weekly basis.

it is hard to be calm when you child is having an exacerbation but that is one thing you can do, try not to show how distressed you are. that was quite impossible for us but I think we learned how to do it after a year or so. Second thing that you can do is try a steroid taper. They might help. Third, complete bloodwork with all immune stuff but also vitamins and minerals. Fourth, think about pets, mold, gluten, etc.

both sides, different things. dr k. mentions in one of his interviews that PANDAS comes from the mother's side and Autism from the father's side. I don't think he means it as the law.

We need to test our kids for heavy metals but our pedi says she does not know which tests to order. So, please, if you had tested your kids for heavy metals, which tests did you do exactly? thanks in advance

Hi Pandas mom, I am in New Hampshire. Can I write to anyone in Mass? I happen to have HP too.

Hopeny -- would you mind reposting after another week with further results? thanks

methyl cobalamin B12 and NAC. they work for my wife. she has two C667T mutations, which may be the reason these supplements help

My dd9 had improved a lot on abx.. With a higher does, she is now about 90%. But, last two weeks, she is behaving weird. In place of what used to be rapidly changing symptoms, she is now either hyper and bouncy or has this strange expression on her face. When I try to talk to her, she hides from me in her closet or, when she faces me, she does with a smirk. She is not like that every day but she is like that few days in a row. I am not sure what to think. Any ideas? thanks in advance

SPD is not even a clinical diagnosis but a description of certain symptoms. Doctors that use it cannot help your child, not with PANDAS or PANS, anyway. So, I am going to repeat the advice I got a year ago when I joined this forum: find PANDAS/Pans specialist. Best of luck

you could try steroids as well. very few kids seem to have sudden improvement. if there is any, improvement is saw-toothed. why only 2 weeks on abx?

there was another tread this summer. some good reports but also some, if I remember correctly, that it has no effect.

Few days ago I posted a question about PANDAS and MTHFR. It seems that only a few kids had the MTHFR test and are doing the supplements. If PANDAS has a recognized genetic component, what are other mutations you identified? thanks in advance

i wasn't able to find TMG anywhere. Yasko's site is extremely confusing and don't give much info about their products. If you can suggest something, i'll try it. There is this also -- the fact that someone has a mutation does not mean that that you know exactly what its manifestation is. one may or may not need to do something about it. For us, it is hard to figure out which of the mutations is contributing to what symptoms. it seems that most symptoms are related to C677T, but we are not sure.

this is as far as I could get, beyond this you go to have subscription http://www.nature.com/nbt/journal/vaop/ncurrent/full/nbt.2487.html

we are at the beginning of trying to find the right supplements. We started with mb12 alone, 1000mg. It worked but it made both kids hyper. now, both kids are on Seeking Health OPtimal Multivitamin with L-5-MTHF -- dosing is still an experiment, either 1/2 or a whole pill. they also take additional zinc, iron, fish oil, additional D and A vitamins, and sometimes P5P. Both kids are also on abx. We are also beginning to be careful about apartame, phenylalanine. I guess, it is not only what they take but also what they DON"T take.