T_Anna

Has anything changes recently? Can you reach her PANDAS doctor or is that the pediatrician? T.Anna

What would be the downside to trying Augmentin again? If he improves you have solved your problem. If he doesn't then you are no worse off then you are now, I think. I guess I'd make a pros/cons list and check in with the doctor. T.Anna

What are her major symptoms? As for testing quickly and giving antibiotics/antivirals she can contact Dr.T. He is good at getting started and will prob see her fairly quickly. I would also try Dr.Schulman in Brooklyn, if she thinks that it is mostly Strep related. There is also Dr.Leckman in New Haven/Yale. T.Anna DS15

I would stress the seizures and need for monitoring. T.Anna

<<--also had echo (at least 2-3 years ago) there since out of state PANDAS doc recommended it due to high Cam Kinase ll (it was in the SC range)>> What is the SC range, if you remember? DS has very high Cam Kinase ii. Thanks, T.Anna

Thanks for posting. I like the way she explained who gets pandas. T.anna

DS was always on probiotics, but maybe his system was always yeasty?! T.Anna

He would speak in bursts and unnaturally fast. Now he makes eye contact and speaks at a normal rate (he even reads the occasional NY Post article). T.Anna

Yes. Dr.Schulman suggested that he probably no longer needs the Diflucan. So far it has been a week and, fingers crossed, he seems fine. T.Anna

We have been on Diflucan in the past. DS had a particular odor to him after a few months on Abx and after a few days on Diflucan it disappeared. He is off it now and seems ok, but we have it on hand in case he needs it again. T.Anna

Thanks. DS isn't really raging at all now. His main issue is severe OCD. He basically has obsessions without the compulsions. He avoids anything that he associated with OCD (almost everything). He doesn't leave the house, sleep in his bed, shower (he does wash himself somehow), doesn't change his clothing, etc. He was much worse a few months ago (rage/crying) and he speaks better now, is a bit more tolerant if his siblings & cousins, etc. Speaking of unwanted advice, this week I ordered Saving Sammy and Brain on Fire for my brother and SIL who have made idiotic suggestions in the past (had the books delivered directly to them). I think I was diplomatic, I said the books explain this type of illness much better than I can. They both said they'd read it...we'll see. T.Anna

Thanks SurfMom! I am so excited to hear that your daughter is making strides in the right direction. You were my first PM message way back in the dry shampoo discussion days. Hugs and prayers for your 15 year old too. T.Anna

You can write letter to expedite the process, you can call them and find out what to do. We received out results in 4 weeks. T.Anna

Powpow, how many procedures did your daughters have when it was done? Dr.S mentioned 5 days of PEX with a day off in the middle. Thanks, T.Anna

According to Dr.S high doses of Azithromycin, like 20 mg/kg can cause rebounds of symptoms when the medication is stopped. That's why she prefers 10mg/kg up to 500mg a day. T.anna

Yikes! I guess we'll keep it on the table. T.Anna

Dr.T can order the test, I believe it can be done with a home blood draw too. T.Anna

Email Dr.T, ask him if he ran the test. He can test it and does sometimes (rarely). You can even just call Silky and ask her to have him answer your email. Dr. Schulman is away until July 16, so that may not be helpful in the short term (whole office/appointment closed). But you can ask Dr.T is he thinks she'd be able to help. He has also sent people to Najjar, but they have had mixed results with his assistant. T.anna DS 15

Just keep in mind that PANDAS is a clinical diagnoses. Did they test for multiple infections? T.Anna DS15

I went to Dr.Schulman in Brooklyn. There is also Dr.Najjar at NYU who treated Susannah Cahalan. In Brain on Fire for Anti-NMDA (N-methyl D-aspartate) receptor encephalitis. That an also exist without seizures. I'll PM you. T.Anna DS15

I feel for you, on nights that DS doesn't sleep he walks around the house. In and out if our bedroom looking for the cats and just restless. I often wish he would just watch TV and vegg. It has been better later we had a week where he suddenly started sleeping at 11:30pm to noon the next day. The last few nights he has been up more. Not as bad, but I feel your pain. For a while he would fall asleep at 8am or 9am As everyone was getting off to school. T.Anna Ds15

JoyBop, do you still give the Azith once a day? T.Anna

Philamom, she only said that she doesn't like Greenstone. She trusts Teva and another generic and asked us to go to a small pharmacist and not a chain. Sure enough our local pharmacist had to special order the other brands at 500mg. To hold us over he gave us 250mg from the ok'd vendors. T.Anna Ds15

Dr.T says that he is not comfortable with giving more than 20mg/kg because higher has been linked to hearing loss (usually temporary, but still a concern). T.Anna DS15

Dr.T says that he is not comfortable with giving more than 20mg/kg because higher has been linked to hearing loss (usually temporary, but still a concern). T.Anna DS15