PowPow

Not sure where you are looking- if you are in western no Va- (PW co?) I can pm you my family practice. Again no abx rx, but they do cultures and have been helpful through our ordeal. And bigmighty- had no idea you lived in va! i think i always imagined you were in the Midwest! small world...

dasu, I PM'd you

We live about an hour or so north of Charlottesville. We see /saw Dr L- one child has since been given a related but different diagnosis and is being treated very successfully and aggressively elsewhere.The other children still see Dr L as needed. I can understand you wanting a different approach- however, if you want PANDAS tx (abx, IVIG, pex) she is the way to go, locally. If you want more integrative/alternative care- you can certainly check into autism/LLMD docs. We saw one in Fairfax for Lyme & babesia- was helpful, but not curative,not even remotely. We have not seen Dr Band, personally, but know of a PANDAS child who did see him a few years ago- he was sympathetic and helpful to her. She was on zoloft and possible abx from him. We did see psychiatry at UVA at onset. The resident was fascinated and wanted to help. The attending (or whoever is "over" the resident) was clueless. This problem was way over their understanding. They tried, but just threw psych med after psych med at us. When I asked about PANDAS (which it turned out NOT to be for one child- no strep involved) they did do an ASO (no throat culture, no DNase-B testing) and it was neg and they said, literally, " sorry, this is worst, most sudden onset case of OCD we have ever seen, but sometimes it just happens like that!" nice... what are your children's symptoms?

how are the neurotransmitters checked, Rachel?

sorry- posted about Ferritin and then read your last comment. oops.

Pm'd you Risperdal did help my child in extreme rage and confusion. She gained a huge amount of weight on it.

Thanks, pik, for this insight. It is helpful to hear how this illness "feels" from an adult. How did the eating get better? Did it? Clomipramine? Thank you for this glimpse into our kids' suffering. My daughter has similar heightened awareness of swallowing.

How long did his flu flare of ocd last?

My pans child had the flu vaccine, no problems. She had it due to some other immune suppression meds she is on. The flu this year has been deadly in our area. Both my husband and I work in first line emergency medical care and I am grateful that my child with an autoimmune disease can be protected. She recieved the shot in oct 2013.

did the IVIG help?

I think that may have been those who were in the trial at NIMH. Some received a placebo. If your child had a severe headache- it was a good sign they got the real deal.

one of my daughters (5) had MRSA in her tonsils (cultured after tonsillectomy). her tonsils were not removed for infection, though- so it was an incidental finding. They were removed for sleep apnea.

Where is petition? Please repost link.

I would believe it. For no reason other than he is taking you seriously. Really. Follow what he says and see how you do. I also agree that a high titer is not necessarily pathogenic & a whole host of other things could cause joint pain/ill feeling. Just my $.02

How high was the steroid dose? Please watch the video t.anna suggested. That video and the ensuing diagnosis and treatment changed my daughter's life.

What happened with Elizabeth wray?

I sent you a pm

My other kids practically starved the month we went gf. Total disaster here. I wish I had a good answer for you, hrosenkrantz.

Wondering same thing.

anyone going or know Dr A in AZ? http://www.encephalitisglobal.org/faces2014.html Just wondering if this may be a resource for some on the West who have very severe, encephalitis-type sick kids?

this is excellent advice. It is a travesty that we have to "experiment" on our kids, but it is the truth. you have to try different paths until you try one that works. I know it makes me personally cringe when someone refuses steroids-- but it is worked for us-- just as treating evasive Lyme or alternative medicine or oils or herbals works for others & we wasted so much time and money on that route. anyways, wonderful advice and very well said, sf_mom.

yet another thing- sorry to keep posting-- my pharmacist highly suggested we get the brand name for this specific drug. We have done that since our first fill. Not sure if it makes a long run difference- but I am not messing with success at all at this point!

also, they said it could take 6 months to work & (the biggest help of all to me) the timing with food is not critical in this use. I had read that the meds need to be given one hour before/after food. this was impossible (now that she goes to school EVERYDAY!!). our doc said for this indication, timing with food does not matter.

I do wish you luck! it is definitely helping my daughter! I sincerely hope some of you find the same results we have. It requires some monitoring - so it is important to have a physician who is very familiar with it.

I think they are getting tired of thousands of dollars a month for infusions and are taking notice