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long term picture after Plasmapharesis


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My daughter had plasmapharesis on an outpatient basis at CHOP in Feb/March of 2011.

She has been fine since. Her diagnosis was Pandas and Sydenham's chorea. Her symtpoms were primarily severe tics, dystonia, and completely debilitating chorea, which necessitated using a walker and neck brace during the most severe bouts.

 

She has been fine since the pharesis, although she would still complain of severe headaches for about a month afterward. (6 total procedures). She is still on prophylactic zithromax, indefinitely.

She is completely back to normal now and is a typical 12 year old girl.

 

I just feel like I'm always nervous that it might return, and her neuro said if she ever gets pregnant, it's possible the chorea could come back. (I don't know if this still applies since she had the pharesis, since he said that before she had it.)

 

Has anoyone had experience (positive or negative) years after pharesis?

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My daughter had plasmapharesis on an outpatient basis at CHOP in Feb/March of 2011.

She has been fine since. Her diagnosis was Pandas and Sydenham's chorea. Her symtpoms were primarily severe tics, dystonia, and completely debilitating chorea, which necessitated using a walker and neck brace during the most severe bouts.

 

She has been fine since the pharesis, although she would still complain of severe headaches for about a month afterward. (6 total procedures). She is still on prophylactic zithromax, indefinitely.

She is completely back to normal now and is a typical 12 year old girl.

 

I just feel like I'm always nervous that it might return, and her neuro said if she ever gets pregnant, it's possible the chorea could come back. (I don't know if this still applies since she had the pharesis, since he said that before she had it.)

 

Has anoyone had experience (positive or negative) years after pharesis?

 

My son had PEX about 20 months ago, unfortunately, it did not help. That was before we discovered Lyme and all though.

 

I noticed that your daughter had dystonia? My son also has generalized dystonia affecting pretty much his whole body. No other dystonia in the family so we are hopeful that it is related to his PANDAS/lyme and can be reversed. Is your daughter currently "cured" of the dystonia? Although PEX was not right for our son, I am hopeful that his treatments will eventually lead to a complete reversal of his symptoms. Just looking for some hope....

 

Thanks, bill

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Her dystonia started about a week after her tonsillectomy/adenoids, after the zithro was temporarily stopped. (She was on zithro for 10 days post op, and then we were going to go to 2x/week.) Dr. T said it was probably from post-op bacteremia. Her tonsils, although they appeared normal, were full of puss. Surgeon said "Her tonsils are absolutely the most disgusting things I have ever seen, and I've done close to 2 thousand of these.)"

 

Her dystonia was in her lower legs and feet. She also had simultaneous head/neck/arm chorea, and a little hand movement,which resolved after clindamycin and a steroid burst. The feet, although improved, never stopped, and then we tried biaxin and medrol. It was like a writhing motion where both feet rubbed together. Biaxin didn't really have any effect, other than severe/profound diarrhea, soh we had to stop after 2 days, and went back to the zithro.

 

Tried tegretol after that, which did reduce it to the point where she could almost walk normally, but she would still fall down stairs and fell face first into a few snowbanks. Tegretol made her basically sleep all day, and she put on at least 10 pounds in about 2 weeks. It basically left her non-functional, and the blood levels weren't high enough, and she was starting to look extremely pale, although bloodwork showed no anemia. (you have to watch out for anemia on tegretol.)

 

After the pharesis, her right leg was still pretty twisted/contorted, it almost looked like CP.. We went for PT, massage/stretch, which helped tremedously.

Edited by oivay
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Oh no...this is yet another scary tonsillectomy story :(

 

Her dystonia started about a week after her tonsillectomy/adenoids, after the zithro was temporarily stopped. (She was on zithro for 10 days post op, and then we were going to go to 2x/week.) Dr. T said it was probably from post-op bacteremia. Her tonsils, although they appeared normal, were full of puss. Surgeon said "Her tonsils are absolutely the most disgusting things I have ever seen, and I've done close to 2 thousand of these.)"

 

Her dystonia was in her lower legs and feet. She also had simultaneous head/neck/arm chorea, and a little hand movement,which resolved after clindamycin and a steroid burst. The feet, although improved, never stopped, and then we tried biaxin and medrol. It was like a writhing motion where both feet rubbed together. Biaxin didn't really have any effect, other than severe/profound diarrhea, soh we had to stop after 2 days, and went back to the zithro.

 

Tried tegretol after that, which did reduce it to the point where she could almost walk normally, but she would still fall down stairs and fell face first into a few snowbanks. Tegretol made her basically sleep all day, and she put on at least 10 pounds in about 2 weeks. It basically left her non-functional, and the blood levels weren't high enough, and she was starting to look extremely pale, although bloodwork showed no anemia. (you have to watch out for anemia on tegretol.)

 

After the pharesis, her right leg was still pretty twisted/contorted, it almost looked like CP.. We went for PT, massage/stretch, which helped tremedously.

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Oh no...this is yet another scary tonsillectomy story :(

 

Her dystonia started about a week after her tonsillectomy/adenoids, after the zithro was temporarily stopped. (She was on zithro for 10 days post op, and then we were going to go to 2x/week.) Dr. T said it was probably from post-op bacteremia. Her tonsils, although they appeared normal, were full of puss. Surgeon said "Her tonsils are absolutely the most disgusting things I have ever seen, and I've done close to 2 thousand of these.)"

 

Her dystonia was in her lower legs and feet. She also had simultaneous head/neck/arm chorea, and a little hand movement,which resolved after clindamycin and a steroid burst. The feet, although improved, never stopped, and then we tried biaxin and medrol. It was like a writhing motion where both feet rubbed together. Biaxin didn't really have any effect, other than severe/profound diarrhea, soh we had to stop after 2 days, and went back to the zithro.

 

Tried tegretol after that, which did reduce it to the point where she could almost walk normally, but she would still fall down stairs and fell face first into a few snowbanks. Tegretol made her basically sleep all day, and she put on at least 10 pounds in about 2 weeks. It basically left her non-functional, and the blood levels weren't high enough, and she was starting to look extremely pale, although bloodwork showed no anemia. (you have to watch out for anemia on tegretol.)

 

After the pharesis, her right leg was still pretty twisted/contorted, it almost looked like CP.. We went for PT, massage/stretch, which helped tremedously.

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My daughter had plasmapharesis on an outpatient basis at CHOP in Feb/March of 2011.

She has been fine since. Her diagnosis was Pandas and Sydenham's chorea. Her symtpoms were primarily severe tics, dystonia, and completely debilitating chorea, which necessitated using a walker and neck brace during the most severe bouts....

 

What a horrific experience for your daughter, and for you-- I am really thrilled that your dear child has had such an amazing turnaround with pheresis. Did she have any other symptoms of "Ps", other then the chorea?

 

In reading just what you wrote above I wonder if this was a Pandas reaction to strep (or other illness) -- or instead some type of dystonia reaction to bacteria of some type?

 

What led you (and Dr T was it?) to think it was Ps?

 

Did she have OCD, or other Ps indicators (urinary frequency, regression, anorexia, anything?) All the best to you and your dear child, and congratulations on taking the steps to get her well!!! I would say you know what works, and if needs be, you have that in the back-pocket to use again.

Edited by T.Mom
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There was no question that the tonsils needed to come out, she had almost constant strep for the year preceding the onset of pandas symptoms. And when they came out, it was clear that they were absolutely riddled with infection and were likely the cause/source of all the strep.

 

 

I still wonder if all of this could have been avoided if they had just taken out the tonsils after the 3rd or 4th strep infection. Other daughter (6) also would test positive for strep but was generally asymptomatic. We also had a t/a for her at the same time.

 

 

Others have said that if you do a tonsillectomy, especially in a pandas kid, you should make sure to do a steroid burst and abx post op. They give you abx afterward, but most surgeons don't give you steroids, but this seems to be an important step in pandas kids.

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as far as other pandas symptoms, yes, she had some.

 

at least a few times, she peed, suddenly, without warning.

it got to the point where this is how I knew an episode was coming on...

she would stop flushing the toilet whenever she did a #2 (OCD?), turn into an absolutely impossible ######, and within a day or so the tics would start, then go into full blown chorea. rapid strep tests were always positive, but strep titers never increased.

 

brain mri and video eeg were negative, although as soon as she started coming out of the anasthesia for the brain mri, she was twitching while she was still under. (she was so choreic they had to put her under to get her into the mri machine.)

 

 

there was one time where she did have "crazy" symptoms when both of my kids got some virus.....she was absolutely terrified of walking on the floor and said the stripes were going to get her. I had to carry her, which wasn't easy. she also started stuttering. this went away after another course of abx.

 

as far as the diagnosis went, the cunningham test showed pandas, but her symtpoms were pretty much chorea.

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