adkmom

Franie, Just finally responding! And seeing I overlooked this in my own brain fog! Hope you get this. Still not sure how the board works and if you automatically see a reply? Anways, my child had the same jerky movements you were talking about. especially in his sleep. amazingly, it disappeared after being on the antibiotics. we're still in a wait and see...for test results and to see how the steroids help him. He is 4.5 as well. Hope all his going well. And sorry the late response! adk mom.

Hi Vickie, Thanks for the feedback. It is helpful. I know you're really active on this board and in promoting. darlene

Hi everyone, So, after realizing we're in the Pandas "family" for awhile, I've decided to put my skills to some use (hopefully My background is as a journalist/news reporter and pr/marketing. I've worked for other causes and never thought I'd be "pushing" a cause that my 4 year old is struggling with. But....that said, in order to start an effective awareness campaign (this one targeting parents), I could use everyone else's knowledge as I'm VERY new to this. If you can answer any of the below questions and/or would be interested in helping out, please IM me. *The other awareness campaigns for Pandas have been: Pepsi Challenge (huge, and amazing accomplishment!), Pandas Foundation "got strep?". Another other's I'm missing? *Why has the OC foundation not supported funding for Pandas research? *Most of the other organizations websites that promote disorders that our Pandas children may exhibit, do not contain any info. about Pandas. Any idea why? (i.e.: the ADHD, ADD, OCD, Tourettes) *Any estimate how many children have been diagnosed with PANDAS? *Estimate of potential PAndas cases (undiagnosed or misdiagnosed)? Someone said Swedo had put it at 5% of the pediatric population. Another article said 25% of the OCD population and another said 1 in 1,000 children could have Pandas. Any valid stats to present to the media? Thanks for all your input and knowledge. Darlene

Our son is usually very LOUD! Can't seem to regulate the volume. I asked Dr. B about this and he thought it was tied more to being hyperactive during the Pandas episodes.

Never heard of that before...not talking...as a form of OCD? How old is he now? That must be so tough. It shows how there can be such extremes! And hear I can't get my child to be quiet.

Totally agree. I've been keeping a journal and it helped so much before we met with Dr. B. Just so I could review it and collect my thoughts and give him a snap shot of what symptoms improved, what didn't and what was going on (with meds) at the time.

It's so confusing. Sensory issues....he'll complain that his brother's too loud but yet HE is talking the loudest??? And it's never consistant. He'll complain one day and then I won't hear it for a week. He'll have the meltdown and then 10 minutes later be chatting and smiling like nothing happened!!! Thanks everyone.

Hi Drifter, Glad to see you made it here (we talked on the med site) Hopefully you'll get some good guidance. Another note --- Dr. Bouboulis, our doc, order blood tests (not just throat cultures) on all in the family to rule out strep carriers. That would be an easy start for you. He said throat cultures are too inconclusive. all the best.

Kim, We took him out of PreK for the next few months at Dr. B's suggestion. Trying to keep him from any viruses circulating while we try to figure out how he responds to the meds. Thanks for the library tip, I'm going to try a "quieter" activity and see how it goes...we're going crazy locked up together!

Thanks for the input. He has always had some sensory issues, never diagnosed. But before PANDAS diagnosis, was okay out doing things. Now, it's immediate disasters. Gets so confusing, thought maybe I just haven't been disciplining him enough. But the meltdowns are soooo extreme. He can't even hear me when he's in one. He's 4 but they still seem too over the top, even for a 4 year old. thanks ladies.

So, I'm having my own meltdowns. Can't understand. My DS4 seems somewhat okay with behaviors at home. But as soon as I take him to a public outing ...grocery shopping today (for only a half hour!), he got so hyper, loud, jumping in and out of the cart, couldn't listen to me. ended with a total meltdown, crying and screaming, rolling around on the checkout aisle (all for over something silly). Couldn't console him and had everyone around looking at us! Does anyone else have to keep their child isolated at times? He's 3 days off prednisone and 1 month into Omnicef. Tic is still there along with aggressive behavior and emotional lability. would LOVE some feedback. i'm worn out PS- this was our first outing in a week!

We see Dr. B as well. You may want to visit the Pandasresourcenetwork.com and sign up as a member. The exec. dir. will get back with you and can give you some guidance on what tests he'll likely recommend. (she works alongside him with this new nonprofit) We brought some basic bloods tests and Lyme test with us that our ped ordered but they were of little help. He typically orders specialized blood tests from a lab in CA. On another note, his office has a discount with Doubletree Hotel in Norwalk. They're about 1/2 off the price. Just ask his receptionist for the contact name at the hotel. hope this helps. good luck. you are in good hands. darlene

Amy, We're only 2 months into the Pandas "world" but many thanks for taking this on! Sounds like you're the perfect person since you know the in and outs of the health care field. darlene

Thanks for the response. Was just wondering. Was sure they do a good job, as Dr. B has recommend the lab.

We're done too! In retrospect my DS4 had some symptoms prior but went into full blown exacerbation right after the flu mist! His twin brother had it has well. Never, ever again! He was diagnosed with PANDAS about 1 month later. I'm convinced it's what threw him over the edge. When meeting with Dr. B, he said it was the worst thing that could have happened to him. (getting the shot). He said "please, no more shots for him, ever!"

Hi everyone, I read a very anti-Igenex article from 2005 about inaccurate testing and too many positives from Igenex. Anyone know anything about this? Also, can you test while on steroids for the Complete co-infection panel? thanks.

Will glady make a contribution! This forum has been invaluable resource!

Kara, How did you know your son might have strep, what made it borderline? And why did Dr. B keep testing your son if he doesn't have pandas? Sorry, trying to learn from your experience because I have a non-pandas twin and can't tell how he's impacting his brother.

Good for you! Where would we all be without our mother's instinct! Hope things settle down for you. And thanks for the ped. recommendation in Plattsburgh. Dr. Beguin was sooo nice and agreed to order tests based on whatever specialists recommended! Whewww. We're off to see Dr. B. on Monday.

Thanks Priscilla. It seemed to be getting better then in the afternoons, behavior started up. And some tics although not as bad as when he was on Augmentin. It's like he needs a higher dose or to take it more frequently.

my dd8 started on this, started to notice a big difference after about 10 days. Unfortunately, after about 2 mos (and trying to wean 2 x) it lost effectiveness. It may have been from us trying to wean though. I did see a post from a mom that said when they were nearing the end of the bottle, symptoms would ramp (other moms said it too)I think the stability is not so good, and you have to get it refilled every 10 days, makes is kind of a hard one to stay on really long term. We changed t Augmentin XR, but my dd is older.

Anyone with experience with Omnicef (Cednifir) dosage for toddlers? Wondering if pandas typically requires higher dosage? My ds4 has been on it for 1 week, does well then 1/2 way through the day all the symptoms seem to worsen. He's on the standard 250mg, 1 tsp 2x day. Is this the typical strength?