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reactive

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  1. Hi all. I have been waiting and periodically looking to see if any study results were ever published regarding the IVIG study that the NIMH had undertaken. I was led to believe the results would be published January of this year (2016) but have not seen or heard anything. Does anyone else know what happened with that? Thanks!!
  2. OK. Maybe I shouldn't say this, but I absolutely disagree with using amoxicillin for a UTI. Grrr. Augmentin would be my preference. In addition making sure that a sensitivity was done to make sure the antibiotic was the correct one, and after that a test of cure culture to make sure it is clear. It seems like another possible step would be the steroid burst? Also some docs are using a steroid taper?
  3. I don't know where you live. This most recent flare for you began in February. We always worsen in March and that is when our snow melts and mold and pollen hits the air. Our DS has been in a severe flare since March 2014 and he had a 2 month reprieve in Jan and Feb 2015 only to spiral down again March 2015. So in our case we have figured out allergies are the trigger. Our DS has been on prednisone 10mg recently as a maintenance dose after a 9 day higher dose taper. He was so nonfunctional in March he was homebound and after one 30mg tablet before bed, he woke up the next AM normal. So
  4. Hi there. Wanted to respond to your concern. First, as a parent you will need to make the decisions you feel most comfortable with, so I would never tell you what to do. However, this is what I would do if it were me. First, I would proceed with the tonsillectomy. I am 47 now and I wish I had mine out when I was little for lots of reasons. I should have had them out, really, but my doctor when I was little said it was falling out of favor. I had so many bouts of tonsillitis as a kid and in that day in age the doc looked in the throat and ordered me penicillin...they did not test me for
  5. I think this interesting, as my DS is also 14. We just went though this in the Winter. He had IVIG in August 2014. Depression was transient for him...just like religous OCD was several months before that...now he cusses like a sailor. That being said, I am all about not just standing by. We had DS on Paxil and his depression worsened. We then had to wean him off that which was a bear. He is now on Celexa and is up to 20mg. I wouldn't have picked that SSRI if I would have realized at the time it can cause prolonged QT...he is thinking about cross country running. To be honest, he th
  6. Hello all. I really look to this forum for information; a lot of what we have been able to do to help our DS 14 we learned here. So here goes...our newest dilemma...anyone else in our shoes? DS 14 has had PANDAS/PANS since aged 4. Currently battling severe flare since March 2014. Had IVIG August 2014. On 500mg Augmentin twice daily. On Celexa 20mg daily. Now since March 2015 on prednisone- took 9 day taper which IMHO helped so much more than the IVIG ever did. Also vitamin D slightly low so on 50,000 iu D3 weekly. Allergies are the trigger. We are sure of it now- been tested
  7. Unfortunately all kids are different. First, unsure if you are treating with a PANS/PANDAS physician But for my DS14, he did have an exacerbation mid March (post IVIG 8-2014) It happened when the snow melted here and mold allergens would have been high, and he had a viral URI right before that He had a sinus nose smell that led us to get sinus CT and rx for diflucan 100mg daily X 14 days (already on treatment dose augmentin since June 2014) Sinus CT: chronic allergic changes His exacerbation: tics, OCD, age regression and baby talk, and a purely encephalitis like reaction you would nee
  8. Did Dr. Latimer have an opinion on that? Neurologists should be able to tell the difference between tics vs chorea movements I have video of my son in exacerbation, one video showing more chorea- Chorea is more rhythmic...hard for me to explain...but would be a clinical diagnosis I think
  9. Thank you for this. My DS14 was diagnosed at age 4 He has had a rough year Now that he is older it is scary as a parent. He flared last Saturday at the movie theater- they almost called the squad but we got there in time He was better the next AM after a 30mg prednisone increase Nice to hear of the older patients and how they are doing and managing...since we are now entering that territory.
  10. I called to see Dr. B also just recently and was told the same thing. I can see Dr. B's reasoning, as it sounds like he has had patients with a family member who is a strep carrier, and that is why those patients were not getting better, so it sounds like that is his policy: to rule it out. If there is a trigger in the home, IVIG can work but the patient may become exposed again. We elected not to schedule an appointment because we had already done that testing in our family, and they still want to do their own. Our reasoning to see Dr. B was large number of + allergies on testing an
  11. The Hippocratic oath states "do no harm". To do no harm: Correct diagnosis. Treat the condition. If unable to treat the condition, refer to someone who can. ("Treat it or refer it") Failure to do this will do "harm".
  12. I have been reading some of the most recent threads. I see a trend that I can't believe we are still talking about. Physicians still not educated in PANDAS/PANS and or physicians who know about the disorder but refuse to treat it. I am lucky to have a local rheumatologist who is open minded and will treat my son. But her one and only partner will not treat. I attempted to hand him the latest consensus paper and he wouldn't even take it from my hand to read it. REALLY? I work in health care, but in a different specialty. It irks me this is still happening...since when, if you are
  13. Hmmm My ds who has so many allergies has a low IgG level now. He did not have low IgG when his allergy testing was done...but it was low last year and is still low even though IVIG given this past August.
  14. This thread is interesting to me. My DS14 PANS has allergies, but they have varied in intensity over the years. In 2010 I had the allergy shots ready to go. But he was not in a major flare at the time and I was afraid of triggering the PANDAS/PANS so I chickened out. They actually had them ready to go and I changed my mind. They did bundle the allergens together for those shots we never got...but he had so many positives on the back testing he would have needed 3 shots per week at the beginning. So they could not get them all in one shot. He is very fair and has very sensitive skin so n
  15. I am by far not an expert, others may chime in. But first you would want to make sure his sinuses are clear. I had heard you need to be on abx longer for sinus infection- 4 weeks? Not sure. but CT of sinus would tell you if sinus is clear of acute infection I think, or if there is a walled off infection. That would tell you if you need more abx.If he is flaring and responds to steroids, I would not hesitate. We have recently been using steroids for ds 14. He flared so badly this past Saturday night at the movies with friends, the officer there almost called an ambulance for him...we had
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