pr40

just an observation. One thing I learned during last two years of my kids' PANDAS is that you go to live without being confident in anything. You also learn to accept that abx are necessary and appreciate that they are much much less invasive (if you child does not get c-diff) then the psychiatric drugs which are offered by some drs as alternative. best of luck

You need to inform yourself about the conditions you have and choose what you want to believe, first. than, second, whatever it is that you have chosen, you have to become your own doctor. what you have is an individual expression of an auto-immune condition -- all you docs agree on this or at least most of them. cause of it is not as important as treatment. you can take lyme test with IGENX just to make sure and you can also do Cunningham's for PANDAS. I assume you did myco and it came negative. Usual treatment on the forum is 1) IVIG, abx, anti-inflamatories 2) methylation 3) diet and healthy life style lot of support and with luck, you may regain some quality of life. In my experience, people with similar symptoms to yours may not have other choice but to try this.

just on gluten and food sensitivity in general. If you are sensitive, the path is one that involves your auto-immune bodies. when that is the case, stopping the offending agent is not enough. You got to wait for a while. rule of thumb is 3 months, sometimes longer. So, if stopping food came with the cessation of symptoms, the food may not be the cause. Go three to four months gluten free, then introduce gluten. If you see changes upon the intro of gluten, gluten is among your causes.

dr b's assistant told us that IVIG is not covered by insurance unless there is a sever problem with immune system. so, if we want it, we can have it but have to pay for it. think about that aspect as well, will insurance cover it?

my kids have pandas and I tend to see most tics through that optic. did you make sure that the tics your son has are not related to infections like lyme, strep, or mycoplasma? normally, you would do a bloodtest for these, IGENX for lyme, regular lab for the others, as well as immune markers. Symptoms you describe, especially their going and coming back, their change mimicking autism, remind me of PANDAS. Best of luck

both of our kids just went through an exacerbation. ds has cold symptoms, dd nothing but PANDAS symptoms. One important thing did happen with your ds, it lasted only one day. then he was ok. if symptoms came back the day after next, it could be a different virus. my assumption is that if you see improvement over time in lessened intensity or extent, then you can call it improvement. and also, better measure will be a year after you did IVIG. looking back, you'll be able to say if it worked. I assume that you are doing methylation supplements. I think I remember you posting about the importance of diet. and no you are not being a drama queen, not in my book anyway. all the best

If you are using hydroxy B 12, what is the brand? I could only find the one made by AOR. we just got our 23andMe results back. I am glad we did it. I am now wondering how much of our kids' Panadas symptoms will disappear if we address methylation the right way. there was one time when we first started only b12 methylcobalamin and the PANDAS was gone for a week or so.

we'll see if you get any stories. I would urge you to do other things while he is doing so well. do 23andMe test. that will give you a good picture of his methylation and what it needs. adopt a healthy life-style and diet if he has not done that already. kids get PANDAS because two or three different things coming together. and so is with the "cure," several things have to improve for symptoms to become manageable. I am happy for you that your son is doing so well.

we need to define what it means being "great" exactly. one definition would be having manageable symptoms. I think most of us are going towards that. In other words, PANDAS is an over-reaction and we are hoping for just a reaction that does not intrude with a quality of life for an extended period of time. How did your kid behave when he got sick? any pandas symptoms? I would be surprised if you get a definitive answer to your question and not only because those whose children are doing great do not visit the forum anymore but because autoimmune problems are, at best, kept in check until there is a crisis when they emerge again. perhaps this thinking is not correct.

we did not look into 504 and I would like to ask you to explain what you expect from it. 504 is there to prevent discrimination. what kind of discrimination do you think our kids can suffer? (I think I recall an earlier post on the same topic.) Is it in grading? Status? or are you after, really, educating teachers about PANDAS? but then you say they don't get it. we are in a very similar situation or rather were then we left local public school for a small private school where understanding peculiarities of each student is a norm rather than exception. In short, if I understand what you are trying to do, I am skeptical that you will have any results. I am, however, not sure that I do understand all of the options.

or he could have caught an infection? there are so many bugs around at this time of year when school begins and kids come together again

I am very happy for you, Croatianmom! I hope this brings relief to your son.

dd was gradually improving for the last two years. she'd have exacerbations that were less and less bad. But then we hit a plateau of sorts. First, RLS came back, then it kind of went away, and she is now for a week or more complaining about being tired and having a headache. she is also moody and irritable. it seems difficult for her to get out of those moods. She was not sick with anything obvious. Her brother, meanwhile, went through probably a coxhackie and a bad cold. he snapped right back from it with minimal exacerbations. any ideas? kids are on methylation supplements, abx, iron, zinc, and magnesium, and probiotics. we just did 23 and me and are waiting for results

we used to get Ferrous sulfate 28mg from CVS or Rite Aid, store brand. no problems with constipation here, perhaps bc we give it with magnesium.

if you cannot test for lyme, one way to deal with the situation is to start abx that treat lyme. If you have results, test will not matter.

if you suspect that your daughter has auto-immune issues, changing diet to gluten, dairy, and sugar free is something you can do while you wait for blood results.

about doctors and auto-immune system: most of doctors practicing today were in school before auto-immunity became an issue. younger drs, those in their 30s, would have heard of PANDAS and alike but even they heard one, old version of it. medicine is changing so radically and most are not keeping up which is a part of our problem

for our dd9, we were told that ferritin level should be close to 100. we were like your kid in the teens when she initially had RLS.

see if dr K would respond to your question. he sometimes answers his e-mails, esp when they are very precise as your question is. thinking seems to be that if the immune system is strong, IVIG will not help. If, on the other hand, titers are high, that would be a reason to believe that IVIG would be helpful. we try with total attack: abx, methylation supplements, anti-inflammatories, restricted diet, lots of outside and exercise, some therapy. this because our kids immune systems seem to be fine.

here is another yes, both ds5 and dd9 had overly sexualized behaviors, fixations with private parts etc. all of your kid's symptoms sound to me too like PANDAS. in your place, I would discontinue all psychotroipic drugs and give the regular PANDAS treatment two years. That's what we told ourselves. If in two years, we don't see significant improvement, we will think of trying the more usual treatment. now, a year later, on abx, with meythlation supplements, restrictive diet, exercise, we are all much better.

how about dependency on Amatandine? is it possible? are sleep problems usual side-effects?

yeah! I feel the same way.

if you think that this is an auto-immune disease, you may want to treat it as such. One abx may not be enough, usually we give combos. 30 days also seems short. do comprehensive blood test vitamins and mineral, all inflammatory markers, and Cunningham's, lyme, mycoplasma. Soar throat could also be coxackie. in addition to sudden onset, one way to determine the likelihood of PANDAS is a genetic history of parents' families. if there is auto-immune diseases, PANDAS is more likely. and if it is PANDAS, you may want to do other things in addition to abx like change diet (usually gluten and dairy free), and take care of methylation and continue therapy.

HPHPA urine test is a test for CLOSTRIDIUM bacteria, i.e. c-diff. does anyone have a different info?

supplements may be correct. I mean, methylation is not the only process that needs to be taken care of. growth of yeast and bacteria might need taking care of as well. While our kids were on abx, methylation supps, and probiotics, they still had issues. We saw marked improvement in mood and irritability when we added Oregon Grape and Saccharomyces Boulardii. Our kids are on wheat, dairy, and sugar free diet as well. they have a lot of exercise and outside time every day. I would not expect that methylation supps alone would take care of symptoms.