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Sydenham's Chorea

Anonymous
Posted by Anonymous
  • 16 Replies
1 mom liked this

DS13 was just diagnosed with this today.

Sydenham's Chorea, formerly known as St. Vitus Dance, is a movement disorder  triggered by strep throat, but it doesn't show up for several months after the actual infection. In fact, many kids don't actually have strep by the time this is finally diagnosed.

My son told me that he was having trouble concentrating in class, so we were looking for ways to help him. In the meantime, he showed increasing signs of agitation and tension in his body - leg bouncing, hand tapping and clutching - even though he was feeling fine. I thought he was just restless from not getting enough activity, but it was getting worse. When he was stressed, his movements got a lot more pronounced, he rocked back and forth, his hands flapped, and he stuttered.

A couple of weeks ago, he caught yet another cold. He's been sick a lot this school year, so I decided to take him to the dr to see if there was anything underlying going on. The dr noticed his movements and I told her about his reaction when he got stressed. After doing a blood test and discovering that he'd had strep in the last few months, she referred us to a pediatric neurologist.

Today, the diagnosis was official. The good news is that this will resolve itself. He will eventually get past this.

But there's a lot of not-good news to go with it.

1. It will get worse before it gets better.

2. He's been prescribed clonazipam to help take the edge off the worst of the chorea. Even though it's a very small dose, it still worries me.

3. The strep that triggers SC is frequently complicated by rheumatic fever, which can damage the heart muscle. We had an echo done today to see if his heart is healthy. That's very scary.

4. He'll have to take penicillin every day as a pill, or a monthly injection until he's 21 to be certain he doesn't get strep again. I'm really concerned about what that's going to do to him long-term, but then, I'm also terrified that this will recur if he does get strep again, or that the next infection will damage his heart.

Why am I posting this?

Because I'm sad and overwhelmed and frightened.

But also, watch those fidgets. If your normally mellow kid starts twitching and bouncing and can't stop moving - and he or she has had strep or even a nasty cold recently, pay attention.

Honestly, the likelihood is that they just need to get out and run around. This is a pretty rare diagnosis. But keep an eye on them.

And hug them tight tonight.

Posted by Anonymous on Mar. 12, 2014 at 10:49 PM
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Replies (1-10):
kidkrazyinAK
by Bronze Member on Mar. 12, 2014 at 10:52 PM

Sounds the same as PANDAS? I have seen a TLC special on this. It's scary.

sugareemommee
by Ruby Member on Mar. 12, 2014 at 10:52 PM
Hugs mama - he's very lucky you're a vigilant mom.
Bekki
by on Mar. 12, 2014 at 10:55 PM

A friend's daughter was diagnosed with this at age 10. She is now 22 and doing fine. Best of luck to you and your kiddo, Mama. So glad you got the diagnosis so treatment isn't delayed.

Anonymous
by Anonymous 1 - Original Poster on Mar. 12, 2014 at 10:57 PM

No, thank God. Not PANDAS. This doesn't have the same personality/psychological indicators, although I do need to watch out for mood swings, clinginess, being unusually emotional, and depression. Although, I can imagine a 7th grader who is no longer able to control how he moves is cause for getting upset!

Quoting kidkrazyinAK:

Sounds the same as PANDAS? I have seen a TLC special on this. It's scary.


Anonymous
by Anonymous 1 - Original Poster on Mar. 13, 2014 at 7:14 AM

BUMP!

OvenInUse
by Platinum Member on Mar. 13, 2014 at 7:19 AM
I have never heard of this condition. Does it help to have the tonsils removed? I was prone to strep throat and had my tonsils removed. Now I rarely even get a sore throat. It changed my life. I wish I would have gotten rid of them sooner.
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Anonymous
by Anonymous 2 on Mar. 13, 2014 at 7:21 AM

I have acquired Ataxia. Initially they thought I had chorea. For the past 2 years I have used 'Brain Gym' along with Friedriech Ataxia exercises to bring some semblance of control to my body movements. Maybe something worthwhile for you to look into

Anonymous
by Anonymous 1 - Original Poster on Mar. 13, 2014 at 7:26 AM

I had my tonsils removed as a child, too. But it's usually indicated for recurring, severe infections, which isn't a problem for him. And you can still get a streptococcal infection with or without tonsils - you just don't get the sore throat and it's harder to find.

Quoting OvenInUse: I have never heard of this condition. Does it help to have the tonsils removed? I was prone to strep throat and had my tonsils removed. Now I rarely even get a sore throat. It changed my life. I wish I would have gotten rid of them sooner.


Anonymous
by Anonymous 1 - Original Poster on Mar. 13, 2014 at 7:28 AM

Thank you for the suggestions! I'll look them up.

Quoting Anonymous:

I have acquired Ataxia. Initially they thought I had chorea. For the past 2 years I have used 'Brain Gym' along with Friedriech Ataxia exercises to bring some semblance of control to my body movements. Maybe something worthwhile for you to look into


alyssaravensmom
by on Mar. 13, 2014 at 7:29 AM
Anytime your child has to go through something, it's scary. He'll do just fine :). Best thing to do is talk to other moms who've been through it.
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