CKJ

We see Dr. Murphy too and she is an ANGEL. We were VERY lucky to be able to get into her PANDAS research group before it closed. We've been seeing her every 4 to 6 weeks for the past 11 months (a 12 hour round trip for us-but WORTH IT). I have learned soooo much from her! The one thing that is MOST apparent is that she and her staff REALLY CARE about the kids they see. DD always looks forward to seeing her "friends" that work with Dr. Murphy!

What are the new drugs? I didn't see any names. My dd was dx'ed with PANDAS about a year ago. Neither Amox nor Penn really did any good for her as we never saw a remission from her symptoms. It took about 7 or 8 months for us to see a real change (for the better) in her symptoms.

What an interesting idea. My dd's doctors from the PANDAS research study have me fill out a TODS (The Tourette Disorder Scale) form each week to monitor symptoms. Maybe you could find some forms online that relate to the symptoms (OCD or TS) that you child is experiencing and complete those each Monday to keep a running record....Just a thought.

I took offense with the title too - I guess being the media, they have to grab your attention to make you read.....however, I did find the article to be o-kay. I just glanced at the obesity part since it didn't really pertain to the PANDAS stuff so I guess I missed the vaccine thing - I was posting the article more for the fact that it involved PANDAS info and several of us here are dealing with this. For a PANDAS article I didn't think it was too bad - I bought 3 copies of this magazine yesterday - one to give to dd's teacher (so she won't think all the things I'd told her about dd and PANDAS were as bizzare as they sounded - LOL) and one for dd's therapist who is very interested in PANDAS. I'm just glad some public attention is being brought out regarding PANDAS - I constantly think about all the kids out there who may have this and are getting punished at home because of their behavior because their parents don't have the ability or knowledge to seek help - I mean I NEVER thought strep throat was that big of a deal until all this happened....

The way it was explained to me by both dd's Dr and Therapist is that is like an "energy burst" that builds up and comes out this way. My dd never had anything like this until she developed PANDAS. The Dr at the PANDAS research said it was know to happen with TS (didn't say specifically how it was related - comorbid or a symptom, just that they were linked). In fact the meds they put her on to help with the rages, Tenex, is used for tics. I guess the way I understood it, although it wasn't spelled out, is that like a tic, it is an uncontrolled burst of energy that comes out as rage.

FYI: http://www.prevention.com/article/0,5778,s...-7442-1,00.html

This was before the tenex was introduced - and I do think it is OCD-related after talking to her a lot about it at the time she told me this. She has had very bad "rage attacks" which started with PANDAS and have progressed from kicking, hitting and throwing things to now verbal "assults". "I hate you" "Your a stupid-head" (she's 6 so this is bad language for her). We were talking about these rages when she told me the comment about the person just like her that tells her what to do. She has also told me on several occasions that "I am a bad person". This is very consistant with "Bad Thoughts" OCD. I think its all OCD stuff.

My thought is that if you got the diagnosis (a confirmed diagnosis), you could get the prophylaxis antibiotics. Its a matter of finding a doctor that is enlightened.

She started Tenex two weeks ago for the TS symptoms. Started with a very low dose - 1/4 mg a day - so she will probably bumped up at some point. Its hard to tell if it is working or not....

I asked the Dr. about the possibility of getting too much Omega 3's (my daughter takes 500 mg of Flaxseed oil a day) plus I put flaxseeds into foods I cook and we eat fish a good bit, eat the eggs that have it, the bread that has it, etc... We eat a LOT of it. The Dr. says there aren't any problems with taking "too much". She said the only "side effect" with too much might be diarrhea since its oily. I have read that way, way too much could cause bleeding problems (if you get into an accident you could have excessive bleeding) but from what I read, that would be from taking tons of it.

My 6 yr old dd has PANDAS (mostly TS symptoms but some OCD too) and she told me that "there is a person just like me, it looks just like me and is as tall as me but its not me and it tells me what to do". It freaked me out too, but I had been reading a lot about OCD and knew that many children describe OCD as another person so I attributed it to that. The part of the brain that if effected by TS, OCD, PANDAS, etc....is responsible for psychological functioning as we know, and as much as it scares the heck out of me, I've seen so much bizarre behavior from my daughter since all this started that not much surprises me anymore.

1. You can use Silk (soy milk) or rice milk that are fortified with the calcium and vitamins in regular milk. Lots of products now add these things (orange juice, soy yogurt, etc...) 2. When my daughter (she is also 6 yrs) was enrolled in the PANDAS research at UF, they tested all of us for strep just to make sure we weren't carriers (we weren't but I was happy to do it to rule it out). So, yes, it would be a good idea if your son does have PANDAS. First, though, I would get the PANDAS diagnosis to make sure that is it. 3. Yes, that is what happens with PANDAS, the symptoms spike and fall dramatically - that is the difference between PANDAS related OCD or TS/Tics and regular OCD or TS. The PANDAS kids have exacerbations and remissions that go up and down (sharply) especially the onset is very sudden and extreme, which is different from regular OCD & TS - which normally comes on slowly and builds. PANDAS kids will have a sudden, drastic onset which should remit with antibiotics (but will still have ups and downs), if the PANDAS child get strep again, the syptoms will come on sudden and drastically again. 4. From what I have learned from my daughter being in the PANDAS research, this will be an ongoing problem for her. Even with prophylaxis antibiotics being used to keep down the threat of new strep infections, she will have symptoms from time to time, they could be realted to strep or even other infections, the flu, stress, etc..... Dr. Murphy told me that the PANDAS kids she sees will have lingering effects - motor problems, emotional/mood problems, etc that are very long lasting - she told me that she's has not had a child that went completely back to normal (normal being before the PANDAS started). Things get better and the child's "old self" will come back, but there will always be something that lingers. I have read a lot about PANDAS (basically everything I could get my hands on since this happened to my daughter) and I've read a lot about symptoms completely going away with antibiotics but this is apparently not the norm. My daughter has been on antibiotics for about 3 months now and we still haven't seen a strong remission - tics come and go, but the moods, emotional liability, rages, etc that we'd never seen before until PANDAS reared its ugly head are still with us and those things make life very tough! We can handle the tics - no problem, its the emotional & rage stuff that is awful for everyone. I feel so bad for her and PRAY that we will see a change soon, we all need it!! VERY glad to hear the antibiotics are helping for you! Good Luck!

My daughter tics in her sleep and also has "rage attacks" in her sleep. She has PANDAS and presented with TS symptoms. I asked the Dr about this and she confirmed that people do tic while sleeping.

Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders The link is below (its a PDF file so I couldn't copy or paste it here). What I found interesting is the last paragraph - just read that if you don't want to read the whole article - Speficically the last two sentences - My dd was having problems with the penicillin (Augmentin to be specific) so we were going to request changing to Azithromycin. I've seen several mentions of Arithromycin here - if your child is taking it are seeing good results and how long have they been on it? http://intramural.nimh.nih.gov/pdn/pub-9.pdf

That was another thing....I started her on Culturelle (Probiotic) a week ago - she hadn't been on any probiotics prior to this and a few days later is when we saw the exacerbation (things went from bad to worse). It occured at the same time we went from the full dose of augmentin to the prophalaxis dose. I stopped both the antibiotic AND probiotic and got good results after two days - from bad to worse to alright. My understanding of the probiotic is to replace the good stomach bacteria that gets killed by the antibiotic. Doesn't that also help control yeast or can yeast also be associated with probiotics???? This is all so confusing