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Rachel

Possible Treatment for Sydenham's Chorea

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Here is a very recent article on Sydenham's Chorea. From research, I am learning that children can have relaspes from this until the appropriate treatment is given. Most of the references at the end of this article can be found online for additional reading. My son will be going into the hospital next week and having a central tunneled line. He will also be starting plasma exchange treatments soon afterwards. Our insurance did approve the treatment. I did not realize the damage that strep could do until I started reading articles. My son would never test positive for strep when he was young. After he started taking antibiotics this year, he started testing positive for strep on a rapid strep test. He had the titer test back in December that checked for past strep infections and the levels were high. This finally got my doctors attention because I reminded him that my son would never test positive on rapid strep test. So my question to him was "When did my son have these strep infections?" I wish I had known to ask for a strep culture and maybe we would have caught on to this part sooner. Rapid strep test are not very reliable. I really wonder how many strep infections that my son had when he was younger that went untreated.

 

 

http://www.bioline.org.br/request?pe14052

 

http://www.unboundmedicine.com/medline/citation/15968928/Treatment_of_Sydenham's_chorea_with_intravenous_immunoglobulin_plasma_exchange_or_prednisone

Edited by rachel

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Thanks Qannie,

 

Our doctor called last night to explain more of the treatment. He is calling it Plasmaphersis. After my son has the tunnled central line is put in, our doctor will start the next phase of treatment. He will be removing the plasma but putting my son's blood back in. If this makes sense to anyone. He will not be using blood products from a doner, so this sounds like a safer treatment. In this procedure they only take 1 to 1 1/2 liters of plasma during treatment time. My son will be staying in the hospital for treatments until his body can safely tolerate them. Our insurance is going to continue to allow treatments on an out patient basis as long as the treatment is working and progress is being made. My son will be monitored closely with blood work.

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My daughter had plasmapharesis about 3 years ago. She was diagnosed with Pandas and Sydenham's. If I can be of assistance, just let me know.

We did it on an outpatient basis at CHOP. It was the only thing that really worked for us, and she didn't have another bout of chorea afterward. We did have several documented episodes of strep, but her titers would never rise, even during an active infection, but she would test positive on rapid strep tests and/or cultures.

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Hi Oivay,

 

Did your daughter get nausated after the first treatment? My son had his first treatment today and about an hour later, the nausa hit. They gave him Zofram and it it helped greatly. Just wondering if this is something that normally happens. BTW, how many treatments did you daughter have? My son is in the hospital and is supposed to have 2 more by the end of this week.

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She wasn't nauseated that I remember. We did have one close call with an asthma attack during one treatment though.

She had six treatments altogether, 2 per week for three weeks. She was completely exhausted though, that day and the next day. We were able to avoid the central line.

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Our doctor came in this morning and asked my son if he could try another treatment today. He said he would try it. They gave him Zofram yesterday and it really helped with the nausa. They will give this to him before they start treatment today.

 

Oivay

Thanks for responding. So all your daughter needed was 6 treatments. That's great news. Our doctor is not sure how many my son will need. The central line was put in for this reason. We really do not know how long these antineuroal antibodies have been in my son's body and what infection truly started all this. My son was sick off and on with ear, sinsus, and sore throats when he was very young. The doctors would do the rapid strep tests and they would always show up negative. His symptoms just kept getting worse the last 4 years. No telling how long all this has been building up in his body.

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Hoping it goes well today! No nausea for either of my girls with pex. Glad the Zofran is on board!

My girls improvement:

one week for one daughter (who had not been as ill for as long) and near total improvement by one month.

by one month for other (sicker, for much longer- onset to pex was three years) and it was not as huge improvement, but it was still very, very helpful. This was a pattern, which we saw after her second pex a few months later.

 

They had it done inpatient over 4 days. and then we went home.. to wait!

 

Both have needed other interventions since then, but it was solidly the key to getting them on track. I would do it again in a heartbeat, if they needed it!

I am so excited you have this chance for your son!

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He is having his 2nd treatment this morning. They pretreated with Zofran but his headache pain level has went up from an 8 to 10. He is supposed to have another treatment tomorrow morning. I am hoping for the best and excited that he is able to get the treatment.

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Rachel: I know this post is two years old, but my son is on a similar path. Sydenham diagnosis and not responding to other treatments. We finished high-dose IVIG last week and all it made him worse, at least initially. I'm wondering how the plasmapherisis worked for your son? How is he now?

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