Can someone tell me what chorea looks like?

[ajcire]

I am trying to figure out what this is... since some people are saying they don't know their child has it until the dr. points it out... curious if maybe I am missing it. I thought it was movement of the hands?

[sf_mom]

One chorea movement: Have them stand in a rigid stance with arm out in front of them.... see if their fingers move like they are playing piano.

[mom md]

Some people have described it as jerky movements, but my son's looked more fluid like(like break dancing). We did see the piano playing too. I went to you tube and found a video I think went this all started. If i was smarter I could post it here but I am technically challenged.

[bronxmom2]

My son swung his arms around in big circles.

[memom]

I would add that when the arms are out straight holding fingers straight, eyes must be closed for the best evaluation of piano playing movement.

 

Ellie

[ajcire]

I am very curious now to see what Dr. T notices when I bring my ds. I don't know if he has this or not.

 

Is it something that would happen regardless of situation or does a person have any control over it?

[melanie]

I am very curious now to see what Dr. T notices when I bring my ds. I don't know if he has this or not.

 

Is it something that would happen regardless of situation or does a person have any control over it?

my son kindof shuffles like.Sammy from saving sammy does the same thing it was creepy.Dr T will know

melanie

[Megs_Mom]

We had every doctor do this test (hold your hands straight out, close your eyes...) and nothing. Then our neurologist said "hold your arms straight out, point your fingers at the sky & close your eyes". And then he calmly looked at me & said "do you see that" and sure enough, her fingers were just gently playing the piano! Very mild chorea, and towards end of episode, but I was so surprised!

 

I would add that when the arms are out straight holding fingers straight, eyes must be closed for the best evaluation of piano playing movement.

 

Ellie

[peglem]

What if you can't get your child to hold arms straight out or up, with eyes closed? Everything I see on youtube is very exaggerated chorea. Does anybody have examples of chorea during real life, as opposed to a test situation. I'm thinking that I'll try to get some of my daughters "moves" on video before we go see dr.L- nobody has ever given a name to what they are- but many happen when she attempts to initiate a purposeful movement. She's okay with walking and running- But when she lost her words- every time she tried to say something it would come out puh, puh, puh. She was having trouble producing bi-labials at the time, so at 1st I thought she was practicing her "p" sound. When that went away, there was no more words, except for every once in awhile, she has a really good day and we get to hear a few words. Its the same with fine motor- when she tries to write or draw, it starts out right in the first nanosecond-but becomes a back and forth "scritchy" movement instead. A lifetime of therapy has not improved any of this. Is THAT chorea or some other movement disorder? And as far as gross motor- she can't pedal a bicycle or even throw a ball- but you should see this very rhythmic, crazy dance she does (maniacally)-I know she doesn't have the motor planning skills to do it on purpose- so is that like a complex tic? Is it chorea? This one doesn't happen when she's trying for purposeful movement- just bursts out of her.

[pixiesmommy]

All I can add is that I wish I had known about the chorea tests before IVIG so we could compare. Pixie (and I) both have mild chorea movements during the "test" that we have done at home. I don't know what you call this, but, Peglem, she sounds an awful lot like what Pix was doing immediately pre-IVIG. Pixie's actually looked like she was WRITHING. She had such complex, but fluid!, movements. It wasn't jerky like you think of a Tourette's tic, though she did occasionally have the head-toss, jerky tic. Hers was this shoulder shrugging, upper body going one way, legs going out another, bending.... it was literally like she was imitating a snake or something. She said it was painful and she was having muscle spasms. Originally the psychiatrist diagnosed that it was EPS from the Abilify, but it didn't go away with any of the detox they did, and disappeared LITERALLY the day immediately following her second dose of IVIG with Dr K.

 

I would definitely video it. It may help you with insurance down the rd or just for documentation for studies, etc. or for yourself to compare later.

 

 

Big hugs,

Manda

[peglem]

All I can add is that I wish I had known about the chorea tests before IVIG so we could compare. Pixie (and I) both have mild chorea movements during the "test" that we have done at home. I don't know what you call this, but, Peglem, she sounds an awful lot like what Pix was doing immediately pre-IVIG. Pixie's actually looked like she was WRITHING. She had such complex, but fluid!, movements. It wasn't jerky like you think of a Tourette's tic, though she did occasionally have the head-toss, jerky tic. Hers was this shoulder shrugging, upper body going one way, legs going out another, bending.... it was literally like she was imitating a snake or something. She said it was painful and she was having muscle spasms. Originally the psychiatrist diagnosed that it was EPS from the Abilify, but it didn't go away with any of the detox they did, and disappeared LITERALLY the day immediately following her second dose of IVIG with Dr K.

 

I would definitely video it. It may help you with insurance down the rd or just for documentation for studies, etc. or for yourself to compare later.

 

 

Big hugs,

Manda

That sounds so beautiful that it went away like that- must seem so miraculous! This is the 1st time in years and years that I have been able to feel hopeful about helping my daughter...and yet, still don't want to hope too much. I'm really just hoping she'll regain some control over her body so that she can actually benefit from therapy. We'll still have a lot of work to do!

 

Its hard to catch on tape because it happens so out of nowhere, but should be easier now she's over the stripping off her clothes, at least temporarily. I didn't want to tape it in the buff, y'know!

[LNN]

To us, it was explained that choreiform movements were often mis-identified as "fidgetiness" and an inability to sit still, that a kid would slide out of chairs or be unable to sit still.

 

My son played piano with his toes, not his fingers. I believe chorea is technically an SC symptom and that in Pandas, you look for choreiform movements. To us, it sounds like splitting hairs, but some research papers make the distinction that if a child has chorea, they have SC not Pandas. I guess there's a medical distinction. So if you're watching video, just bear in mind that a doctor may look for something a little different in Pandas.

[ajcire]

Yes! My ds has an incredible attention span and always has yet the child can't sit still. He's constantly fidgeting. He takes Karate and that is when I really noticed it.... There are so many times he is supposed to be standing still and he just can't. He's not sliding out of chairs.. just in constant motion even when in total concentration mode.

 

I am really curious to have an expert opinion. I have his history and his cunningham number that should be enough for me but I keep feeling the need for more confirmation.

 

 

 

 

To us, it was explained that choreiform movements were often mis-identified as "fidgetiness" and an inability to sit still, that a kid would slide out of chairs or be unable to sit still.

 

My son played piano with his toes, not his fingers. I believe chorea is technically an SC symptom and that in Pandas, you look for choreiform movements. To us, it sounds like splitting hairs, but some research papers make the distinction that if a child has chorea, they have SC not Pandas. I guess there's a medical distinction. So if you're watching video, just bear in mind that a doctor may look for something a little different in Pandas.

[smartyjones]

One chorea movement: Have them stand in a rigid stance with arm out in front of them.... see if their fingers move like they are playing piano.

 

i can't believe this but we were in the ped office last week for a strep test and i forgot to ask him if he would be able to evalutate this. forgot - how ridiculous! this dr imitated st. vitus dance for me last year when we were first getting into everything. i was focused on discussing strep and how willing he'd be to consult with others if need be.

 

i've only seen the video on you-tube of very pronounced piano playing. i've tried to do the arms out with my son - we make it like a game and he likes it - arms to the sky, arms out in front, arms down - he holds his fingers fairly straight but does slightly move them up and down - i am unsure what is to be expected of a 5-year-old. would any healthy 5-year-old be able to hold their fingers straight or is it normal to have some wavering?

 

does it so much matter if they have chorea or to what extent or is it more of a diagnostic criteria?

[Megs_Mom]

One chorea movement: Have them stand in a rigid stance with arm out in front of them.... see if their fingers move like they are playing piano.

 

i can't believe this but we were in the ped office last week for a strep test and i forgot to ask him if he would be able to evalutate this. forgot - how ridiculous! this dr imitated st. vitus dance for me last year when we were first getting into everything. i was focused on discussing strep and how willing he'd be to consult with others if need be.

 

i've only seen the video on you-tube of very pronounced piano playing. i've tried to do the arms out with my son - we make it like a game and he likes it - arms to the sky, arms out in front, arms down - he holds his fingers fairly straight but does slightly move them up and down - i am unsure what is to be expected of a 5-year-old. would any healthy 5-year-old be able to hold their fingers straight or is it normal to have some wavering?

 

does it so much matter if they have chorea or to what extent or is it more of a diagnostic criteria?

 

It's diagnostic. It helps you know that there is something neurological going on, rather than traditional OCD or ADHD. My daughter also has the fidget part - she is active anyway, but in an episode, she cannot sit still at the table or in school. It's not hyperactive, and she can maintain focus on her work - she just moves around the desk or up & down in her chair. We got her a bubble to sit on, which helped as she was then always in motion. She is focused - but could not do really small detail work - like a model. This lead to great frustration. When she was on steroids, that was the first thing we noticed - within a day, she was able to sit and work on a model by herself without throwing somthing across the room in frustration. I have a clear image of my husband & I standing next to each other staring at her while she worked at the living room table. It was this K-Nex model that she & I had been doing for a month - and it was the first day of steroids, and the first time she ever did a piece by herself without my oversight (ie: I was doing it). I always read EAMom's posts on Parkinsons, they are of great interest.