peglem

I tell my daughter's teacher to keep her fed- a snack @ every 1/2 hour seems to help a lot- my daughter rages instead of ticcing, but I think the principle is the same. But, why is he not eating? Is that PANDAS related, or is the abx causing tummy problems? Augmentin ALWAYS causes tummy problems for my daughter (some really awful gassiness as evidence of that!).

Have you tried valerian root? It has a calming effect similar to valium. It may at least take the edge off. It does help to calm my daughters rages. I'm sorry to hear things are so rough...and so sad to hear that your daughter is so desperate for help.

Wish I had a church congregation I could approach.

Yes, valerian root- relaxes when awake, helps sleep when tired. Also, white noise, dim lights, try to make the environment as unstimulating as possible.

I think it would have to be more chronic to be pitands. This was a one time deal. I don't remember a huge amount about it- just remember being happy for them that it was resolved easily. I think they'll probably be back if it crops up again!

Allie has had periods where clothing (at home only TG) was not an option, but when she was doing so badly the clothes weren't an issue. I actually thought when she stripped, "Oh no, here we go again." But she did accept clothes w/o problems the rest of the day and got dressed fine this morning. It was only looking back that I realized the stripping was where she turned it around- like she was stripping away the PANDAS!

My daughter's CamK activity was very high, never had high titers and was, I guess, a strep carrier.

There was somebody from AZ here awhile back that suspected PANDAS. I referred them to my pediatrician and It seems that what he had was a post infectious encephalitis, not PANDAS.

I forgot...(how did I forget this?) that the whole turn around began with her stripping naked right there in the living room. She's doing pretty well so far this morning- and back to the video game...

Allie's last IVIG was 3 weeks ago. For the last 2 weeks, but especially the last one things have been pretty rough. Lots of SIB, fixations on things that apparently terrify her but she can't let go of... But today, at @ 1:00 it just shut off. She's been calm and peaceful. She's had one of those hand held computer games since October, but has really never been ever to really play the games where you have to guide the characters through some environment. She just hasn't had the dexterity to manage it. She sat down this evening and just started playing it, and she's not great at it, but she's about as good as I am! I am so amazed and excited... Don't know how long this will last, but what a rush! So, I've heard about symptoms happening like a switch was flipped, but recovery? Has this happened with any of your kids, where symptoms just cease abruptly?

But, y'know, no matter what he is going to be exposed to strep- its everywhere. That child probably got it from someone else at school. School's have chronic strep infections- they are the mothers of all carriers! If he was fine on the higher dose abx while he was going to school (he WAS exposed), then its the reduction of abx that allowed the flare when exposed. Well, that's my opinion anyway.

Have you talked with GKTW? We both have supporters on BT and they're new this month.

About a week after the email, I received a hard copy in the mail w/ personal comments from Dr. Cunningham...was a very nice thing to show the doctor.

Brilliant!!! They haven't published it yet (my comment) and wonder if they will the last published comment was yesterday. It was there when I read it about an hour ago! Okay, I see it now! Where'd they get that screen name? I was looking for Peglem!

I am so sorry to hear of this. We are just back from the meeting and my son was approved. According to the '504 cordinator' (not sure that was exactly what the title was) he qualified simply based on the fact that he has PANDAS....regardless of his current level of functioning because any exacerbations have the potetnial to impact his learning. I honestly was surprised it passed. The psychologist and the educational diagnostician were acknowledging he had PANDAS verbally but their actions indicated their doubt that this impacted him educationally. My husband had already drafted an appeal letter. Fortunately, the cordinator had actually researched PANDAS and was aware of the impact of future exposure to strep etc, effecting his learning. It might be beneficial for you to call your state ed dept and request clarification about the director's interpretation of the law. To me the director sounds as if they are trying to intimidate educators from providing and recommending what a child might need. The exact opposite of what the law stands for! So glad your meeting went well and your child will hopefully get the needed help.

Brilliant!!! They haven't published it yet (my comment) and wonder if they will the last published comment was yesterday.

I left a comment for people to vote for our refresh project to give Dr. Rioux some more research!

Hi Dawn, My son recently started with tics, and we suspect PANDAS. I was searching the forum, and I got to this post. I have psoriasis for 20 years and also I had really bad strep infections when I was a child, that eventually they went away after a long treatment of antibiotics. Can you explain to me why all this could be related to my son PANDas? Thank you! Deby I think the implication is a genetic predisposition to a strep triggered autoimmune disorder.

You cut very nicely to the heart of the matter, and so civil, too...didn't even mention Dr. Rioux's castration!

#9 Flagstaff on the evening list is a finalist and does not have a vote button.

Do any of your kids have tics where they hurt themselves? The last week, Allie has been banging her elbows into her hips- both are severely bruised. I was watching and she starts doing this before she gets upset...so I'm thinking the upset is caused because it hurts and she can't stop...then goes into a panic. Another similar one, but worse is when she knees herself in the forehead. Tics? or does she actually have a compulsion to self injure?

Got this from Dr. T's site: http://www.wusa9.com/rss/local_article.aspx?storyid=101805

AND we're ahead of the lemurs!

I agree. I think all they can do is disqualify the votes...if they can prove they are proxies. PANDAS has no control over who votes for them and how, so how could they kick us out of the contest if somebody casts proxy votes for us? I'm all for following rules that make sense, but this one doesn't make sense to me!

I think the votes are timestamped and it would be easy to put some kind of electronic monitoring on that. But, I think pepsi will look pretty bad if they have to turn away charities who think they have won...its not like the lottery where people are just doing this out of greed. These are groups who are looking to help needy people and improve communities... I understand your reasoning, Vickie, I do. And I'm sorry you're in this position...and trying to do the right thing after your hard work has been sabotaged. Okay, lets just do the best we can.