Not a great week

This week has been very hard.

On wednesday, we went to UCSF to get a second opinion. The neurologist did not have any experience about post pump chorea but he felt that it was more probable that Clarisse’s chorea was post pump related than Syndenham’s related. He reviewed the MRIs and confirmed that they did not show any structural changes in the brain.

Clarisse has been increasingly loosing muscle tone over the last 10 days. She does almost no movement. After some research, it seems to about 1.5% of chorea cases are so acute that they result in some mild form of paralysis (called chorea paralytica).

I spent a lot of time this week on Google, trying to digest as much information on Chorea as possible. Most of the researches are old. Here are some of the patterns I detected.

  • 20% of syndenham’s chorea patient do not show positive at any of the blood tests so it is not possible to determine completely if Clarisse is suffering from post pump or Sydenham’s chorea.
  • Post pump cases use to be more sever/permanent pre 2000 because of hypothermia and circulatory arrests – Clarisse’s heart surgery does not show any sign of hypothermia or circulatory arrests.
  • Most of the very sever/permanent post pump chorea cases are correlated to some for of lesion in the Basal Ganglia (which would be visible in the MRI).
  • Infant seem to be able to recover better from Chorea than older patients.
  • Finally, I found a 2010-commentary about a 15-year old boy who underwent heart surgery, was diagnosed with Chorea 2 weeks after the surgery, did not show anything positive in the biological tests. Chorea was sever enough that they had to administer risperidone at low dose (3mg/day). Patient fully recovered after 4-months.

It is impossible to say at this point if Clarisse’s case will get more acute or become permanent. We remain positive that it is going to resolve given that she does not seem to show any structural damage to the brain. Our focus at this point is to make sure that 1) she eats well and 2) that her spirit is high so that we can buy her the 4-6 months she needs to recover – without having to take risperidone – which can have nasty long term side effect in 30%+ of patience.


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