Friday, May 16, 2008

Botox on a Friday (or Tuesday) afternoon

Not for me, although I couldn really do some with the ever deepening worry lines. William was finally seen by an orthopedic doctor about his 'deformed' feet. You can wait ages for such referrals but, all of a sudden, physios appeared and the next day bought along an orthopedic doctor or an 'orthopod'. His verdict -lots of long latin words to describe the abnormalities in William's bones and tendon. The solution - botox injections into the back of his ankes. followed by 'serial castings'. This will be a long process where plaster casts are put on his feet and up to his knees. The first one will be put on immediately after the botox and each week he will go to orthopedic clinic to have his progress reviewed and the angle of his casts gradually altered to correct his feet. This will happen today or Tuesday. After 4 weeks, we will assess if this is working and, if so, continue...for several months If it is not, he will need surgery to lengthen the tendons at the back of his legs.

I didn't really want to do all this before his transplant assessment but have been told it is necessary ASAP or it will be too late to correct. We always knew this was progressing and he may not walk for ever. However, it was thought to be part of a degenerative condition. It seems now that he has a rare, genetic gut problem called 'tricho hepatic enteric syndome', THE for short and, along side this, mild cerebral palsey. Separating these out has made his treatment plans clearer - intestinal failure = TPN and transplant assessment and cerebral palsy has its own tried and tested ways of addressing various problems, such as correcting foot deformities caused by tight tendons or 'spasticity'.

It is all progress but painfully slow and unpleasant for William. He is 3 years old and stuck to a 2 foot drip line 20 hours a day. Now he will have both his legs in plaster and won't be allowed to walk and run around with his walker for as long as it take A toddler confined to a chair for many weeks, perhaps months. I think I will write a toddler entertainment book.


Rebecca said...

Awww Sarah. I don't really know what to say. Poor William. I could see from your blog how important his few hours off TPN were to him, being able to run about, and it's so so sad that this will be taken away from him.

I'm hoping and praying that having to go through all the botox and plaster casts will be beneficial for him in the long run.

Sending you bucketfuls of hugs.

Becky xxx

Katie H said...

Sarah, I'm so sorry to hear that Wills is going to be stuck with his feet in plaster for so long, but hoepfully it will help him to be able to keep running around in the long term. My thoughts are often with you and your family,


stephanie nimmo said...

Hi Sarah
sent you an email recently but don't know if I have the right addy. Daisy is about to go through exactly the same wth her feet and probably her hips too! We'll have to meet up to swap tips on how to keep them occupied while chair bound! Drop me a line when you have a mo! Steph (still on 20 hour feeding regimen too) x