Dean1065

Thank you that is helpful information.

Our 8 year old 59 pound daughter was recently put on a daily dose of Azithromycin 200mg. She is on a double dose for the week due to a big strep outbreak at her school. After that she will return to 200mg per day. A different doctor has now told us that that she should not be on that dose every day due to liver and other concerns due to buildup of the drug over time. I was hoping others that have experience with Azithromycin could tell me what they know about proper prophylactic dosages? Many thanks!

FWIW, I got Hashimotos Thyroiditis when I was 25. My daughter now has PANDAS. Her thyroid function tests are all normal.

I was wondering if anyone has heard anecdotally, or in their own exsperience, which PANDAS symptoms IVIG seems to have the best impact on? I know that there are a ton of varying types of symptoms regarding OCD/PANDAS but our daughter seems to have the most problems with intrusive thoughts. I am curious if it seems to work better on some symptoms than others?

I just saw this statement at the bottom of the web page: "ClinicalTrials.gov processed this record on January 11, 2012." I wonder what that means?

We are less than a month into PANDAS with our 8 year old daughter. Ours presented will severely intrusive thoughts and constant confessions. You just described our daughter to a T over the last couple weeks.

I see that the 8 year study that is supposed to give insight into the longer-term prognosis for PANDAS ended in May 2010. Does anyone know when this study is due to be published or why it has not been as yet? That seems like a long time to hold onto study results. http://www.clinicaltrials.gov/ct2/show/NCT00044239?term=Characterization+of+Childhood-Onset+Obsessive-Compulsive+Disorder&rank=1

Mayzoo, We are very new to this and obviously still learning every day, but many have told us that a mycoplasma test is imprtant too.

Our daughter had an ASO of 691 and a DNase Antibody of 1000. Does that say anything about the timing of the infection?

Thank you to everyone that replied. All the advice has been a tremendous help!

Thank you, I emailed them Friday.

Any pointers on how to help them learn to swallow the pill?

My Dr. called in the one pill twice daily. I hope and pray that it works.

Thank you all. This is so very hard...

Thank you all very mcuh for the replies! For those that were asking, her mycolplasma was negative.

10 days ago at this time, I had never heard of PANDAS. Now, I feel it is all I know. My 8.5 year old daughter went to bed last Wednesday (12-21-2011) night the most sweet-hearted, happy-go-lucky kid you have ever seen. She was social, smart, and outgoing. Thursday morning she woke up with unbearable intrusive thoughts. Her thoughts basically terrorize her and have been ever since. She confesses all day long about thoughts of violent attacks on her, her family, and God. She also has bizarre thoughts that are involving sexual taboos. A couple days prior to this she developed a minor URI/cold. Several of her friends have also had strep in the past 10 days. Her ASO on 12-26-2011 was 770 and on 12-28 she had several more labs drawn. Those results showed ASO 770, Anti-DNase B over 1000, high HSV and slightly high EBV. We have been on Aumentin for 5 days and have not seen improvement. Our Dr. is open to prescribing Augmentin XR but was unsure of the dose for a 55 year old child. I was wondering if anyone had any suggestions as we are up against the clock getting it called in before they close for the day. Thanks in advance-Dean

My 8 year old daughter woke up Thursday 12-22-2011 with textbook PANDAS symptoms. Subsequent lab results showed 12/26/2011 ASO-770, 12/28/2011 ASO-691. She began Augmentin ES on 12/28 but we have yet to see any relief as of 1/2/2012. We have heard that Augmentin XR is supposed to have better results in PANDAS and our Dr. is open but unsure of the dosage for a 55 pound child. Any help would be greatly appreciated! She also showed elevations in DNaseB, EBV (just below positive level), and HSV. Does anyone know how these relate to PANDAS?