Week #3 of the recurrence

Like last time, things have been becoming progressively worse. We are reaching the point where talking is very very hard, holding her head straight is very hard, walking is very hard and chewing is very hard.

But Clarisse is keeping a very good spirit so we are learning to be patient and hope that she is going to win this fight like she did last time.

We have decided to wait a few more days before we try to explore meds because we are concerned about the side effects.

Did a lot of research about Chorea and Recurrence. This seems to be the most comprehensive research on the topic. There are no references to persistence so we are hopeful that this is temporary.

Recurrence

We started seeing signes of involuntary movement last Sunday night. Things have gradually gotten worse since them. We met with the Neurology team on Friday. They do not have a clear understanding of what might be causing the recurrence: it could be an auto-immune reaction to some kind of infection, the results of some dammage to the Basil Ganglia 3 years ago or something else. These cases are rear and each child seem to react differently so it is hard to predict.

We did some labs on Friday. All the results came back normal. We are waiting for the Strep culture. Last time it took 13 weeks before we started to see some progress so we are learning to be patient.

These are good reminders that how lucky we are most of the time when life is un-eventful and the brain performs its normal magic. Will try to update this blog every few days with more information.

Doing well

Clarisse is continuing to do well. She has completely recovered: No signs of Chorea over the last 18 months. 

 

Continuing to do well…

Clarisse has continued to do well over the last 9 months. Here are a few pictures from her recent trip to France:

We are feeling very lucky and enjoying every bit of it. If your child is diagnosed with Post Pump Chorea, there is hope for a full recovery!

“Tout est bien qui finit bien”

We have a saying in french which translates into “All’s well that ends well”. Clarisse is now back to her pre-op state. Here is a picture of her building a sand castle on the beach.

Time to turn the page and start a new chapter. Thanks again for all your support during the last six months.

Almost there

Sorry for the lack of updates: The last two weeks have been great and we have taken advantage of that to recharge a little bit.

Clarisse if almost 100% back to her pre-op state: Speech is back, trunk is back and her arms are back. The last item we are working on is more fluid walking: given that she was lying down for the most part over the last 5 months, her feet are not used to the pressure of her weight anymore and her muscles need some training. But she has a great PT team working with her and making progress on a weekly basis. 2-3 more weeks and Clarisse should be fully recovered.

I am going to take some time and try to provide a summary post of the journey we went through over the last 5 months for parents who land on this page through a google search for Chorea or Post Pump Chorea but in a nutshell, there is hope!

Special thanks to all our friends for their continuous support.

Movies

Clarisse continues to make progress in the right direction. Today, we went to the movies. Alphas and Omegas – 3D. Good practice for the left hand: She ate the full bag of popcorn on her own.