peglem

When my daughter is actually feverish- its like a PANDAS vacation for us. She's calm and peaceful- that's only during the fever though. PANDAS behaviors come back when the fever goes away.

Unfortunately, Dr. K. has dropped out of speaking at the AO Conference. I am bummed about it. Now Dr. B. is on the actual speakers list instead. Will he still be part of the think tank?

http://bloodjournal.hematologylibrary.org/...ull/112/13/4961 This paper is way too complicated for me to understand- but the DISCUSSION section at the end explains how CamKII is involved in autoimmunity and inflammatory processes. Would love to have Buster's (and anybody else who understands this) commentary!

I'd take her to UC for a swab if her doctor won't do it, because I wouldn't want to wait to treat until I see the PedNeuro. I'd get the swab done just before her next dose of zith is due, then give the zith on 2 consecutive days (maybe 3) to allow it to build to treatment levels in her tissues...I would want the strep (if that is what it is) documented, but it seems crazy to me to wait around for symptoms to get worse.

I just started a post about this paper that suggests taurine can reduce CamKII levels. http://www.ub.es/farmacia/recerca/articles...elixJunyent.pdf But, in thinking about it further I wonder if that would help in PANDAS- taurine lowers it by regulating calcium channels. But if auto-antibodies are triggering the increased activity- not sure the taurine would compensate for that.

Another interesting paper- but some have reported that taurine increases tics. http://www.ub.es/farmacia/recerca/articles...elixJunyent.pdf

When we did the testing, we had hit a road block w/ treatment. The results of the Cunningham test got things moving, not just because of the results, but because it put my daughter's physician in touch w/ people who could help him understand what we are dealing with and how to treat it. We had a very high CamK- but Dr. Latimer did not know what that means in my daughter's case. But, the high antiD2 antibodies is what she said could not be explained away- auto-antibodies that should not be there. So, I wonder why everyone seems to put more stock in the CamK scores than in the antibody levels?

The "unwarranted use of antibiotics" is what sticks out for me. If the tics and OCD are diminished w/ antibiotic use, I think its safe to say there is evidence of a bacterial etiology, and that, in itself, warrants the use of abx- whether you can find and identify the causative bacteria or not. Symptom improvement on abx, IMHO, is good evidence that abx is warranted. That's a big "DUH", no?

My daughter's CamK is very high and she's chock full of OCD, but we've been dealing with this so long, I'm not even sure how much memory she has laid down. Some things she remembers well, but she has never been able to sequence anything...

If you want to find out if he has it now- you'll need to swab.(rapid and culture). The blood test cannot tell you if you have a current infection.

Or he's forgotten the answer: http://www.latitudes.org/forums/index.php?showtopic=7729 Anyway, it does sound like part of the PANDAS.

Not sure ours is a tic...it happens when she gets excited (overstimulated?). It may be a nonverbal child's way of expressing joy? We just don't know.

I was thinking more that it possibly explains ocd- a thought or action initiated but unable to make the next neural connection to follow through- so can't complete the loop? So, keeps searching for the connection repeatedly?

http://www.independent.co.uk/news/science/...ind-971483.html

That's what I think. After a couple of years of low dose prophylaxis (mostly zith) and us thinking this is as good as it gets...we were hit with an exacerbation last October. (strep + in Sept). We'd just made the pediatrician aware of the Cunningham results and provided the research and phone#. Things were bad...Talked the pediatrician into getting more aggressive w/ abx. He was afraid of damaging her liver, and I appreciated his concern...so he talked with some specialists and they told him higher doses would probably be safe. Still, even treatment doses of different abxs did not give us improved symptoms. What made a huge huge difference (we've never seen improvement this good) was 10 days of rifampin + full dose augmentin. When that was done, we continued the augmentin as zith was added back (at a higher dose) then dumped the augmentin (she gets stomach problems with it) and continued with the higher dose of zith. Things have been very good, mostly, since then.

We've only done one low dose IVIG (2 1/2 weeks ago)- my daughter's aggression got slightly worse (it had improved considerably), but she also has developed a high pitched screech that we had not seen, er, I mean heard, before.

While my child is a bit smaller, its like restraining a well oiled octopus to do a blood draw. Valium, lots of valium! (for my child, not me!)

As far as medications affecting the test- email Kathy Alvarez and ask. I think perhaps the pred. burst has an effect on test results, but think that abx does not affect. But, I'd ask the lab to be sure- no use your child being miserable if you can ease the symptoms.

I once had a kinder student- I kept smelling dukee in the classroom and checking to see if someone had an accident, or maybe didn't wipe so well after using the toilet. Turned out it was this kid's breath! After his tonsils and adenoids were removed, his behavior (really hyper and impulsive) drastically improved, as did his sleep problems. I understand the desire to avoid surgery and medication...but you could very well turn things completely around w/ a tonillectomy and some antibiotics. You might want to consult an ENT, just to get an opinion-then make a decision. I think all your son's issues could be related to infection. I have a severely autistic 15 yo daughter. We recently discovered that her autism was most likely caused by a strep triggered autoimmune disorder, called PANDAS.

So, it took about 6 weeks after the 1st IVIG to see improvements? Was he in exacerbation when you did the 1st one?

Valium is not a med that has to build up in your system. For heavy duty anxiety situations (like IVIG, getting through the airport to fly, surgery) we have given as much as 30mg. My understanding is that this is a hefty dose- but she still has plenty of fight left in her, even at that dose. So, in answer to your "how long?" question- about 1/2 hour! We only give it on an as needed basis and usually only 5 mg- for day to day anxiety. 10 mg if she has a doc appt, or blood draw...we have become pretty adept at judging how much she'll need. I'd try the kit anyway- my daughter tests out at the IQ of a rock, but the kit helped her to get comfortable with what would happen. We probably did 20 play IVs before she would touch the play needle (flexible plastic), and @ 10 more after that, until she was comfortable with it. The first 5 times, she sorta watched what I was doing from across the room...but it really helped her to feel like she knew what was going on. And I talked to the toys that were being IV'ed about being afraid and how long it would take and how brave they were. Bottom line, its free and its worth a try!

They are not allowed to do this without your permission and your child's doctor is not allowed to discuss your child with anyone w/o your permission. I NEVER let school communicate with my child's physicians. If they need a note from the doctor- I get it for them. In fact, I'll get the notes in advance, so they'll be covered legally and will have no excuses.

I don't know much about these titers, but doesn't it take longer for Dnase to rise and fall? Aside from these numbers, how's he doing w/ the zith?

I'd just like to add that after going through something like this "normal" and "ordinary" become very precious and sweet- you will never take it for granted again.

Then there's my kid...non-sudden onset OCD, but w/ strep related flairs. She'd go from bad to very very very horrible- and abx would bring her back to merely bad. Agressive abx have made her not too bad and we see signs of "normal development"- she's about 12 years behind though!