Choreiform Movements

[emmalily]

Hi everyone,

 

I was wondering if anyone whose kids have choreiform movements as a symptom could shed a little light on a problem I'm having:

 

As I've said before, I still have some physical problems left over after PANDAS, one of which my doctors are calling "prolonged dysautonomic attacks" for lack of a better term. With them I have a high heart rate, a very upset stomach (upper and lower GI at the same time) and lots of uncontrollable squirminess and jerking/waving movements of my arms and legs, and violent shaking. They're definitely neurological in nature and I've been told that they will probably go away the longer PANDAS in remission for me.

 

Unfortunately, a couple of weeks ago I realized I needed to go back on antibiotics because I was having a little OCD, mostly food restriction and repetive thoughts. I did so and felt better very quickly. But these attacks I've been having (which I had pre-PANDAS diagnosis, during PANDAS treatment, and still while off antibiotics over the summer in equal strengths) are coming on stronger. I was down to about three a month and this month I have had 14.

 

I started to wonder if this was chorea. I never had overt tics so I've really concentrated on talking to the docs about my OCD. I've told them in detail about these attacks, but I'm wondering if not being able to see me do it, are they not even thinking maybe chorea?

 

http://www.youtube.com/watch?v=RsIQFeYOkAg I look pretty similar to this poor kid, but maybe slightly less active (I try to hold it in).

 

So anyway, my big question is this: with PANDAS, have you seen that chorea is constant for days on end or can it come on for spurts of an hour or so, then disappear and return again a day or two later?

 

Thanks in advance!

[WorriedDADNMOM]

Emmalily, I am sorry to hear this about you. You sound like you are older and have dealt with Pandas. Can I ask your age???

 

I am totally not the best person to ask but figure I might learn something and a least try to help.

 

My dd7 has dealt with first exacerbation post +aso titer was a eye blink/eyebrow/forehead scrunch/eye roll tic. Then subsequent flares we have learned info about mycoplasma. She has tested twice positive for high current infection for Mycoplasma and has had some improvement on zithromax. Her more recent battles have only been slight ticcing of her forehead/eyebrow, but more so, the head bob and "chicken dance" flapping of her arms and squeezing of her thumbs in her fists to try to restrain the movement. She has even had some head roll stuff too. So, to answer your question, I think if there is infection it can come and go. So many of our issues have strep, mycoplasma, EBV, Mold, etc.......There are so many possible external triggers.

 

Questions I thought of:

1) Have you or your doc looked at other bacterial co-infections that might be going on????? Treated with different/stronger abx????

2) Have you ever looked at other Viral infections???? Treated with anti viral meds.

 

DD had, I believe, Strep in conjunction with EBV(Epstein Barr) which is mono. I know EBV can flare much later than initial infection since it is in the herpes family.

 

I have done alot of reading on encephalitis, encephalopathy and other brain and infection stuff just to try to understand what is going on with my dd's.

 

I look forward to hearing from you. Good luck and God Bless!!!

Edited November 30, 2011 by WorriedDADNMOM

[butterflymom]

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Edited October 5, 2015 by tampicc

[emmalily]

Worried--Hi, thanks for the thoughts! I'm 21. Luckily I have come up negative when tested for coinfections, except for mycoplasma igg, which we have treated as if was an active infection (with success at the time--went about a year with OCD after doing so). Defintely believe there could be something lingering though. Your daughter's movements sound very similar to mine. I like your description of "chicken dance." I'm sure I look that plenty of times

 

Tampicc--I'll get in touch with Diana. Thanks so much for that info. Definitely sounds like it could be a possibility.

[oivay]

During her episodes, my daughter's movements were actually worse than the ones on that video. They started with the head/neck/arms, but progressed to the legs to the point where she needed a walker. She also used a neck brace, which really seemed to help her. She was diagnosed (by Dr. T) with Pandas and Sydenham's.

 

Her movements never stopped unless she was asleep, although sometimes they would slow down a little. They only stopped completely when she was on abx, and then abx and steroids, and then plasmapharesis. With each new episode, they got progressively worse. She tested negative for everything but strep, but her titers would never rise, even in the middle of a documented strep infection. Doctors are extremely reluctant to diagnose chorea, I think because most of them have never seen it.

 

 

I have videos of her during her episodes. PM me if you think it would be helpful.

[oivay]

During her episodes, my daughter's movements were actually worse than the ones on that video. They started with the head/neck/arms, but progressed to the legs to the point where she needed a walker. She also used a neck brace, which really seemed to help her. She was diagnosed (by Dr. T) with Pandas and Sydenham's.

 

Her movements never stopped unless she was asleep, although sometimes they would slow down a little. They only stopped completely when she was on abx, and then abx and steroids, and then plasmapharesis. With each new episode, they got progressively worse. She tested negative for everything but strep, but her titers would never rise, even in the middle of a documented strep infection. Doctors are extremely reluctant to diagnose chorea, I think because most of them have never seen it.

 

 

I have videos of her during her episodes. PM me if you think it would be helpful.