peglem

I can hear the answer now, "I'm sorry, we are not a veteranary office. But I don't think you're allowed to keep Pandas as pets. Try your local zoo..."

Well, If Dr. Cunningham is able to come up with a diagnostic test from her research, I would think that would go a long way towards changing the situation! Right now I think it can be billed under other insurance categories- post infectious encephalitis (what Dr. L uses), auto immune...there are threads about this somewhere!

Another way to look at it is that your parents see THEIR child struggling and think they have something to offer that will help their child.

Are we on autism one, or the other PANDAS sites?

Elmwood has been voting for us, but they are in the 50K category. What's up w/ that?

My son is getting his WOW group to vote for us.

My daughter had 2 LD IVIGs 3 weeks apart. She was fairly stable (or much better anyway) on 500mg zith every other day. After the 1st IVIG she got a little worse, we waited it out, and the 3rd week after she started improving. Then we had the 2nd one and it was really crash and burn. Not the worst she's ever been but much worse than before IVIG. We've not seen improvement and its been 4 weeks. We have not reduced abx. Her doc suspects that w/ her immune system being so lame, she's got chronic infections that we see no immune response to and the IVIG may be fighting that. So, now we are collecting a bunch of BM specimens because before he adjusts abx, he wants to make sure he knows what we are dealing with. Anyway, she's scheduled for 1.5 mg/kg this Wednesday and Thursday. I'm tired.

I give 1.5mg @ 1/2 hour before sleep. If she's not asleep in 1/2 hour, I give another 1.5 mg. But, I'm trying to cut down- not because its dangerous, just that I want to get her back to where she sleeps on her own. I used to start out w/ the 3 mg and she would fall asleep exactly 1/2 hour later. Usually, she does fall asleep w/ the 1.5, just sometimes it still takes more.

I like that you don't have to give it separate from abx, although my daughter takes nystatin and I have to keep it separate from that. Also, though, I'm told it keeps c.difficile in check, which can be a problem w/ a lot of abx.

Sorry, forgot to give the link to the Wikipedia article- http://en.wikipedia.org/wiki/Henry_Cotton_%28doctor%29 Doesn't anybody else see Dr. Cotton as a butcher who just kept removing a patient's body parts until they either died or faked a cure so he wouldn't cut on them anymore? Too bad they dropped the idea of infectious etiology, before they had a better method of dealing with infection....but, sheesh! This seriously disturbed me!

And here's a rather long, but I thought interesting book except: http://www.dana.org/news/cerebrum/detail.aspx?id=780

This on Wikipedia @ Dr. Cotton gives an inkling why his ideas didn't last. Remember, this was before pennicillan.

Yea! We're at 33 now!

Okay, here it is- http://www.turkpsikiyatri.com/en/default.a...icle&id=592

My understanding is that if treated (appropriate antibiotics, immunotherapy) PANDAS has a good chance of disappearing (or going in to remission) with adulthood. There are a few moms that post here that have PANDAS. Pregnancy was helpful for a couple of them (obviously not something you can pursue). Peglem...where is the link to the Turkish Paper? They were all adult men with PANDAS. I'll have to see if I can find it again. The link on the original post doesn't work anymore.

Okay, I'm not crazy! I posted this when the initial post was much shorter and had no mention of strep!

I'm so sorry to hear this! It is not at all unusual for PANDAS siblings to have PANDAS as well.

I have been wondering about that!

I wonder if there were any follow up studies. Nice find Vickie! I've always had a lot of problems with my teeth- they're a mess!

Do you have a history of infections, or did your problems begin shortly after an illness?

You might be interested in this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/P...13/?tool=pubmed

We didn't run the subclasses for IgA. But my daughters total IgA is very low. You have to be careful w/ IVIG if you have low IgA because you're more prone to reactions. We do IVIG that is low in IgA. Not from the doc, but the only real significance I've seen in the literature is that low IgA makes one prone to autoimmune disease. Have not found a lot of info on it at all.

We are currently collecting stool samples- lots of them. Today my daughter started her period. Is it still okay to collect, since there will probably be traces of blood in them (not from her bowel)? She started just after the doc's office closed for the day- and I'd really like to get all the samples collected by Monday. But, if those samples are not going to be usable- well, I'd rather not muck about any more than I have to.

Peg -- Our DS does not have tic behaviors, but given that CamK/taurine study, I thought it was worth trying taurine here, as well. The first couple of days with the taurine were fine and his short-term memory seemed to be improving, but then about Day 3 he seemed to be activated . . . more anxious and fidgety than we have seen in quite a while. When I did more research on taurine and found out it's one of the major ingredients in those "energy" drinks like Red Bull and the like, I started to wonder if that was what was behind the hyperactivity. So we stopped giving it to him. You haven't seen with your DD in that regard? I'm wondering if we gave up on it too quickly, or attributed some behaviors to it that really didn't belong to it. Anyone else use taurine on a regular basis? Any thoughts? I knew that taurine was in those drinks, but I thought that was to promote focus. I just checked a MONSTER label (my older teens love those!) and it has 1000mg of Taurine. Allie does not drink MONSTERs (I have to draw the line somewhere. ) I've been supplementing w/ 325mg 2x/day. The label suggests 2x-4x/day and I decided to start with the lower amount. I haven't seen any difference that I can say, "Ah ha! That taurine really works!" She seems slightly better this week, but this is week 4 post LD IVIG (which seemed to make all bad things flair), and 2 weeks post steroid burst. I'm going to keep her steady on the same dose for now. She's going for IVIG 1.5mg/kg next Wed & Thurs, so not a good idea to be playing with things right now. And she's supposed to get a second IVIG at that dose in 4 more weeks. So, it'll be a while before I can do anymore experimenting w/ taurine. In case anyone is interested, here is the taurine study being referred to here. http://www.ub.es/farmacia/recerca/articles...elixJunyent.pdf

I don't think so. Sometimes I post a comment before I cast a vote and it still comes up w/ my name on the comment before I vote. I see where people are posting "50 votes from_______" How can someone give us a lump sum of votes?