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Let's talk about Dystonia.


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Just because I don't believe I've ever seen it mentioned on here before.

 

Who has dealt with it? Who has recovered from it? Dystonia originates in the Basal Ganglia, just like P.A.N.D.A.S., so I'm really surprised we don't see it in more of the kids on here. That being said though, it could just be dismissed as tics. Just thought I'd start a discussion...

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My son was diagnosed with Rheumatic Fever/Sydenham's Chorea almost 2 years ago. He has had chorea, tics, and dystonia with exacerbations. He has been on Penicillin VK since diagnosis. He seems to be slowly improving as time passes but still has movement issues when his immune system is challenged.

 

He had very severe dystonia on 2 separate occasions. At one point he could not walk because all the muscles in both legs had seized up completely. This was shortly after he initially fell ill. He also had dystonia in his neck and shoulders. When he had a second bad exacerbation last winter he had severe dystonia again - but only in one leg. I haven't seen any dystonia since that time.

 

I haven't seen too many others mention dystonia on here so I am curious to see what others might have to say! Thanks for creating the post!

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PKM ~ One of my old doctors said that I had Dystonia in my records without actually telling me so for about four years. I'm more than a bit confused on that one... The area in question are my neck & shoulders, just like one of your son's. There are some days when I can barely lift my arms to write in class because of my shoulders. Bleh.

 

Rheumatic Fever, Sydenham's Chorea, & P.A.N.D.A.S. too? Or no? I've only talked to one other parent outside of the country (they were in Denmark). What's it like trying to find a savvy doctor up in Canada? & has your son just taken antibiotics for the Dystonia or has he had Botox or other treatments?

 

I hope others have more to contribute!

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Our son had an intense (but thankfully brief) dystonic reaction when our local child psych (who "didn't believe in PANDAS") told us to increase his daily zyprexa dose by a factor of 6. Huge mistake! Luckily, when we tapered off the zyprexa, the dystonia abated (along with other nasty side effects).

 

So neuroleptics in particular can cause dystonia, and (from what I read) it doesn't always remit even after the offending medication is discontinued.

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Emerson,

 

My son got stuck in certain positions with his dystonia...his head would be frozen so that he would be staring up at the ceiling and his shoulders would also be fozen up so that they were almost touching his ears or sometimes he would be frozen so that his head was stuck leaning over to the left side. I had him at home when his dystonia was so bad because, like you, holding a pencil and writing was simply out of the question. His muscles were just sooooo tight. It really was like he was "frozen". He is young though and never complained about much pain with it - so I don't know what kind of pain he experienced with it (not much of a complainer). Whenever his dystonia was bad, his CPK levels (blood test) were always very high - so I would have to imagine that it was painful to some degree.

 

I don't really know what might be available to you to help with the dystonia because his resolved on its own in time - he never had any other treatments for the dystonia. Will we see it again?? Who knows, but we just take things one day at a time. I hope someone else might have some thoughts on what might help you with this. I am sorry I don't have more to offer.

 

My son was diagnosed with Rheumatic Fever and Sydenham's Chorea. The PANDAS question remains. We have no PANDAS specialists here in Canada. No savvy doctors trying to help us out much! We are thankful at least for the Penicillin VK - it seems to be protecting him from strep (as far as we can tell). He has had many throat swabs with the 72 hour cultures (no rapid strep tests with my doc) and so far they have been -ve since starting the penicillin. I know that Sydenham's (for some children) can take a long time to resolve. I have heard from others that it has taken up to 3 years - and so we still remain hopeful that things will resolve on their own. He does seem to be SLOWLY getting better with the antibiotics and TIME. He has essentially been symptom free for about four months now (and he even had a few viruses thrown in there). We will have to see what flu and strep season brings for him this year. At the same time - I think that Sydenham's can evolve into PANDAS - it is my opinion that all of these post-strep conditions are on the same spectrum. This forum keeps me up to date on all of this - and there is not a very active Sydenham's Forum out there to be found. So I tune in daily to this one!

 

I have read all your posts (I really do read the forum daily!) and I think you are a really great kid. You are really trying to be active in your health care and treatment. I encourage you to keep fighting the fight! You are doing a wonderful job!

 

I hope others might have more to share regarding dystonia and possible treatment options........ has your doctor offered any thoughts on how to possibly treat it??

 

PKM

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