post strep dystonia

[Pandamom777]

I have been trying to find a doc familiar with post-strep dystonia. Since this information is even newer than PANDAS, very few papers have been written on this topic.

 

I spoke with Dr. Kaplan, here in Minneapolis, along with a movement disorder specialist, but have gotten nowhere. PANDAS may be controversial, but post strep dystonia is pretty much unheard of. This seems odd, as Sydenham's chorea is so well documented, and the leap to believing other movement disorders could also be strep related seems fairly logical.

 

Compounding this confusion is that my daughter has a significant developmental disability, autism and is non-verbal. Before I heard about post-strep disorders, we saw MANY neurolgists (and others) looking at possible dystonia or seizures. Sadly, many of them felt, because of her disability, that the movement is a "behavior." Only a few were willing to look further. We never got any answers and quit looking.

 

Years later, after dental extractions (and antiobiotics) the movements disappeared for many years. Now that they have returned, I'm hoping the added info regarding post-strep movement disorders along with how they stopped could be the missing pieces.

 

Where to go???!!! What to do???!!!

 

Sharon

[Dr_Rosario_Trifiletti]

I have been trying to find a doc familiar with post-strep dystonia. Since this information is even newer than PANDAS, very few papers have been written on this topic.

 

I spoke with Dr. Kaplan, here in Minneapolis, along with a movement disorder specialist, but have gotten nowhere. PANDAS may be controversial, but post strep dystonia is pretty much unheard of. This seems odd, as Sydenham's chorea is so well documented, and the leap to believing other movement disorders could also be strep related seems fairly logical.

 

Compounding this confusion is that my daughter has a significant developmental disability, autism and is non-verbal. Before I heard about post-strep disorders, we saw MANY neurolgists (and others) looking at possible dystonia or seizures. Sadly, many of them felt, because of her disability, that the movement is a "behavior." Only a few were willing to look further. We never got any answers and quit looking.

 

Years later, after dental extractions (and antiobiotics) the movements disappeared for many years. Now that they have returned, I'm hoping the added info regarding post-strep movement disorders along with how they stopped could be the missing pieces.

 

Where to go???!!! What to do???!!!

 

Sharon

 

I have seen post-strep dystonia. Does your son or daughter take any medication? Even mild D2-blockers in an irritated brain can swing chorea into dystonia. One treats this exactly like PANDAS. I mention this in my 1996 PANDAS variant paper.

 

I would also consider an entity called anti-NMDAR. I'd be happy to talk to you about this - best way to contact me is trifmd@gmail.com

 

Dr. T

 

Dr. T

[kim]

interesting

 

Received May 9, 2009; Accepted August 1, 2009.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773839/

 

anti-NMDAR encephalitis affects younger patients and is often treatable. The association of NMDAR antibodies in patients with possible Mycoplasma pneumoniae infection warrants further study.

[Dr_Rosario_Trifiletti]

I have been trying to find a doc familiar with post-strep dystonia. Since this information is even newer than PANDAS, very few papers have been written on this topic.

 

I spoke with Dr. Kaplan, here in Minneapolis, along with a movement disorder specialist, but have gotten nowhere. PANDAS may be controversial, but post strep dystonia is pretty much unheard of. This seems odd, as Sydenham's chorea is so well documented, and the leap to believing other movement disorders could also be strep related seems fairly logical.

 

Compounding this confusion is that my daughter has a significant developmental disability, autism and is non-verbal. Before I heard about post-strep disorders, we saw MANY neurolgists (and others) looking at possible dystonia or seizures. Sadly, many of them felt, because of her disability, that the movement is a "behavior." Only a few were willing to look further. We never got any answers and quit looking.

 

Years later, after dental extractions (and antiobiotics) the movements disappeared for many years. Now that they have returned, I'm hoping the added info regarding post-strep movement disorders along with how they stopped could be the missing pieces.

 

Where to go???!!! What to do???!!!

 

Sharon

 

I have seen post-strep dystonia. Does your son or daughter take any medication? Even mild D2-blockers in an irritated brain can swing chorea into dystonia. One treats this exactly like PANDAS. I mention this in my 1996 PANDAS variant paper.

 

I would also consider an entity called anti-NMDAR. I'd be happy to talk to you about this - best way to contact me is trifmd@gmail.com

 

Dr. T

 

Dr. T

 

Ooops! meant 2006 paper.

[T_Mom]

I want to add here a note re: our family's experience with Dystonia, in case this might be of help to someone.

My husband's mother has a very rare genetic based dystonia which, it is believed, both her Father and Uncle had as well (Norwegian descent.) Onset for my mother in law was in her 20s. She is very affected (walks bent over with arm crutches--wry neck, twisted back, etc.)

 

The family believes that it was after the Spanish flu pandemic (1918) that both her Uncle and Father were affected and first "came down with" dystonia--

 

Jump to 2010. Both of our daughters apparently have Pandas. (Sudden onset, severe symptoms alleviated by Pandas treatments.) In exacerbations they have OCD issues (differing presentations, one VERY severe OCD with mild ticcing, and the other moderate OCD with severe outbursts and raging.) In both it had a sudden and unexpected onset.

 

Both children respond positively to antibiotics--and steroids. One has been on full strength antibiotics for over a year--and has had two steroid bursts. Our other d is on Sammy-dose of Augmentin--and does well with it (ie., obvious improvements.)

 

Have you tried full--on antibiotics for a lengthy period?

We found it to be very benign and incredibly helpful.

[Pandamom777]

No, we haven't done long-term antibiotics. When I first approached my daughter's pediatrician, he was skeptical, but wrote a 10 day prescription for Amoxicillin. After reading posts here, I see that won't be very helpful, so I have been trying to find the right doc to work with to decide which type of antibiotic and how long.

 

What's interesting is when the dystonic movements started, we looked a lot into seizures since she had just started on Depakote when the movements began. Not until I saw Beth Maloney talk about her book did I start looking into Amanda's medical records to discover that she had strep at that time as well.

 

Amanda had repeated ear infections, followed by repeated sinus infections and was on over 60 doses of antibiotics. They often didn't bother testing for strep, since they were giving her an antibiotic for her ears/sinus anyway. This dropped off significantly when we started home schooling, and this is also the time when the dystonic movements were gone. Hmmmm....

 

The movements stopped for 7 years after dental extractions. She was given Ancef in an IV and Keflex orally. I found it interesting that she had never been given these meds before and that I read that they are used for 'resistant strep,' although Dr. Kaplan said that there is no such thing as resistant strep and that it is easy to kill. I'm trying to figure out if getting antiobiotics in this combination was key, or if there was an infection in her mouth that resolved, or something else....

 

Thanks for your offer to help, Dr. T, I will be emailing you soon to discuss Amanda.

 

Sharon

[T_Mom]

Sharon--our d has been on full-strength Amoxicillan for over a year--that has been effective for her. It took time, but we saw week to week improvement on long-term abx-- all the best as you pursue help.