OTSMITH

She has SEVERE irritability. and the main thing is her hands and feed, sometimes her lips are BRIGHT<BRIGHT red. people comment on them all the time. Her current dr.s have mixed views. if not kawasakis, we have no clue why her ands and feet are red. they mentioned needing to detox the strep out of her. any one have any advice?

Thanks for the Reply SF. It just tells me this post-strep rheumatic fever, sydenham's chorea, kawaski diseae-thingy is never ending......

We have been dx w/ Sydenham's Chorea. I have never been fully sure of that dx. Now they are throwing out words like "Kawasaki Disease" on top of the sydenham's . Anyone have any experience with hthis link?--J

It appeared my daughter got worse once on Inosital.We aborted mission and she leveled of again.--

My Sydenham's Chorea (so they say), is doing pretty well. We are 5 months in to the saw-tooth healing process. She is @ 85% back to us. ( we lost her there for awhile). She has lingering problems with tingling/itichih in her toe and finger joints. She still can not wear underwear,socks, shoes (other than Crocs), shirts /pants with seams and that our fitted She is 4yrs old and continue to say "her body fails her". I am trying to decipher if it is 1. Sensory Perception 2. OCD 3. Joint pain from possible rheumatic fever I was also wondering does anyone have any experience on how long these symptoms stay.thanks--J

We have INOSITAL to my daughter's diet. It is a part of the B vitamin that works on the OCD/Anxiety piece. I dont have alot of qualifying research. It is coming. Keep your ears posted---J

Well my daughter has Sydenham'Chorea with OCD complications.Our neuro just put us on predisone for 30 days. We lasted 9 days and than decided to wean her off.(this was just last week) Ifelt like we were trading one awful symptom for an even equally awful side affect. My daughter looked AWFUL on predisone.She got the " moon face" , had debiliating headaches and stomache pains. She felt like her skin was crawling I have heard that most chidren do not see the postivie results until AFTER they have completed the entire course. We will never know. Good luck with your decision--J

We just turned 4 when my daughter got dx. Sucks!

thanks for all the great replys. EAMOM, I can only speak from our experience, My "SC" daughter maintains on Pecilan Prophylatics, and she has been exposed to strep, and shows no major regression, she has been exposed to hand foot mouth and showed no major regression. But she had H1N1 and had MAJOR regression. She also seems to regress with just mild colds etc...Like other families have spoke about it very much has a "saw tooth" pattern, which is very frustrating for her little 4 year old world.

When my duaghter first became sick, I found PANDAS on the web, and it seemed to fit like a glove. We than got into the children's hospital and they said Sydenham's Chorea (b/c of the "dancing" tounge, milkmaid grip, excessive movement, joint pain etc...) 2nd and 3rd consultations confirmed SC. we spoke w/Dr.C, he seems to think PANDAS b/c of the OCD complications. We have not done the C-study,b/c she is doing rather well now. Her neuro said on a 1 to 10 , he rates her "chorea"a 1 with OCD complications. i was wondering are there any Sydenham's families on this forum and/or what are their experiences? just curious, I know PANDAS and SC are in the same family but different ....J

Hi Ellie, my daughter's name is Ellie. Well we are on our 2nd week of predisone, and last night was complaining of leg cramps. It seems she is experiencing ALL the side effects of the steroid gig. I am not happy @ that. Her original dx was RF/SC.

Moon Face is dierect swelling or puffyness of the cheeks. It sorta looks like kids with kidney problems. Anyhow, i hear it all goes away, BUT I feel like we just traded in one side effect (from her SC) for a different side effect (predisone). She is sooo uncomfortable,but everyone swears this predisone works, so we are gonna keep at it.

My daughter has developed significant sensory issues with clothes, no socks,no coats, no pants, no underwear,no long sleeve. I also have spent tons of money trying to find the right shirt. I am also a pediatric OT and I have tried the sensory brushing protocol on her and this senory dysregulation is from the brain inflamation and is not responding to my typicial SI diet protocal----J

I cant really answer your questions b/c we are 7 days into our first round with predisone. My daughter complains of stomache aches, headaches,she is always eating,gaining weight and has the moon face(swollen checks). We are supposed to be on 4weeks with a taper but I think I can only handle a 2 week run with a taper down. Do you feel like it is helping your sons PANDAS. We do not see a difference yet.---

Ohhhhh Crap, do I feel dumb. okay she is taking 30 mls a day for 30 days weighing in at 35 lbs. Does that sound better? She is complaining of stomach ache, our Dr. prescribed Zantac for that. She is ALWAYs starvin (that is coming from a kid that NEVER eats, so it is almost comical), and has becomes slightly more aggitated. (feel bad for her lil brother) we are only on day and I look forward to this chapter being over. We are switching from shots to oral prophylatics, because the shots were soooo tramatic. Thanks for helping set me straight, you ladies are wise---Jenn