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

Thanks Karen for that indepth respone, well my daughter is 4 and weighs 35 lbs (your daughter sounds lean). So I guess that is why the low dose, also maybe her dosing is different for Sydenham Chorea (although , I believe she has PANDAS). Did your daughter gain weight and get the 'moon face" puffiness? my daughter can not wear clothes, socks or shoes, she has to pick her nose before speaking to someone and has chewed off all her hair,literally. She says her brain wont let her stop and "mommy, PLEASE make this go away!!!!!!!"---thanks for the support, helpful, J

DCMOM,thanks for that.im gonna share your story with my husband. One day someone should organize a retreat for all of our families on this forum to have a chance to meet in person. Would be great---

Well , we just started a month long predisone run at 5 mg a day. It is our first. I am a bit torn with this and am looking for support/advice good or evil. I am concerned @ side affects and long term gut dammage. My daughter has SC and the chorea is doing well but her OCD is really complicating things for her. Will the predisone address the complusions. Is this worth it?

Well my daughter (whose official dx is SC) brought home swine flu, and boy did it hit us HARD. Ran through the entire family like wildfire. She was doing well the first 3 days but than when the fever continued to day 4 and 5, ALL her symptomes and excacerbations returned. Heartbreaking. She was a train wreck. The good news here, is that we are flu-free (took 2 weeks) and she is showing signs of healing almost immediately. In a weird way it feels good to have the H1N1 behind us. So much fear surrounding it. Just wanted to let everyone know--OTSMITH

Well we can speak first hand.3:4 of my family have the swine flu (since wed.).my daughter is 4 months into Sydenham's chorea/PANDAS. 11 out of 18 of kids in her class have it. It has been long and daunting week. At first I though..huh...so this is..we can handle this..but this flu rides a very aggresive and weird course. Twice we almost rush me to the hospital b/c i thought i was takingmy last breathe. Now for my daughter, she is a warrior, but also heartbroken. She is 4 years old and recognizes that ALL of her chorea,OCD adn symptoms have returned. All that progress we have been makingis gone..just like that. Not only is she VERY sick with H1N1 ,now she is also fighting her SC symptoms. In a wierd way I amglad we got it and under our belt. I dont THINK you can get it twice. But I dont think we can handle this again next year and I will be contemplating vacination. Yes... we have been pumping LOTS of alternative stuff...oscillocoum, super greens,vitamin c,elderberry.. I think it may have helped with the severity of the flu. my daughter is also taking Tamiflu.-- hope that helps--J

We are taking Bicillian shots each month. She has been exposed to strep 3 times AND DID NOT GET IT!!! ----J

Well my daughter has been doing much better since prophlautics. I do not worry what she looks like..I just worry @ the weather. A friend reminded me you do not actually get a cold from beig cold. Colds are from germs It just feels nice to know that we are not alone. My daughters new OCd/tic is chewing visously on her hair. She stoped waving her fingers in the air( like playign piano) and started with this hair thing. Hope everyone starts getting some rest--J

My daughter has panic attacks around getting dressed. She will now only wear shorts and t-shirt., crocs..no socks, no jacket,no long sleeve pants or shirts. Problem is we live in Denver, Fall is here and it is starting to get very cold. At first we thought it was her jt. pain,but now believe it is her OCD and not SPD. Ladies, does anyone have any suggestions.? Getting dressed is like climbing a mt. I have wasted and spent alot of money on shoes and clothes---J

I believe CST released some hidden strep andto her body.My daughter vomitted violently All night. I believe it made my daughter MUCH worse. We have not and will not be returning.---J

Hi ladies, Well I have been a pediatric OT for 12 years and my 4yr old daughter has been dx with Rhuematic Chorea for 3 months. I have had to take a medical leave of absence from work to take care of her. We are now starting to think she may have PANDAS due to the OCD complications. Anyhow, my speciality is SPD and SI. In my 12 years working I have never treated a known-PANDAS case or Sydenham's chorea---weird. I am trying a sensory diet on my daughter...brushing, proprioception,massage, weighted blankets. We are doing sooooooooooo many alternative tx , I have no idea what is working or not. I am WILDLY available for you mother's. I can give you individualized sensory diets or speak to you as a group.Let me know your needs and wants---Jennn