Botox

Back in November Connor had Botox on his arm, hand, leg, and foot to counteract tone.  I heard a lot about Botox working wonders for kids with hemiplegia on a list serve I am part of Hemi-Kids.  My understanding is that it knocks out targeted muscles and helps to loosen them.  This corrects 'tone'  or as I see it tightness.  Connor's thumb was tucked into his hand and he held his fingers quite tight pre-botox.  He also had a hard time lifting his arm above his shoulder. This affected his crawling, he was only able to do an army crawl and it was not a symmetrical one. His right arm being tucked in as well. It also made it difficult for Connor to crawl up the steps.  His right hand hand a hard time lifting to get onto the step from a crawling position.   Well the botox worked wonders and within days we saw a difference and everyday since there has been marked improvement.  He can now crawl normally and does not revert an army crawl.  He crawls open handed instead of fisted.  He can spontaneously open his hand to grab or reach an item.  Not always successful with the holding, yet.  And Connor can crawl up the steps like no ones business.  Actually the first time we saw him do it was a week or so before Christmas and he crawled up the steps saying "Go Go Go".  That is his mantra.  He is hard to keep still and when he tries to squirm away he says "go go go". 

Pre- Connor I never realized how useful botox was.  I never heard of it outside the realm of facelifts.  Go figure.  Dr. Evan's our Physical Medicine and Rehabilitation PM&R doctor at Children's hospital did the procedure.  I didn't really think about the posibility of negaitve consequences until we went for an evaluation last week at Kennedy Krieger Institute KKI for their Constraint Induced Movement Therapy CIMT.  The Therapist there said Evans did a great job in Connor's hand and she had previously seen that a child with botox in their hand had lost the ability to move their fingers for the three months that the botox lasts.  So glad it for us.  But now I am scared about the next round. 

We were hoping that this first round of botox would be the only one and it would give Connor the time he needed to strenghten the corresponding muscles to the ones that were knocked out.  Well, I guess that was too much wishful thinking.  I have been noticing the last week or so that the tone is returning to Connor's thumb.  The gains in his shoulder and arm seem to have taken but not the thumb.  I was told by our OT at Children's that this often happens in the smaller muscle groups, such as the ones in the fingers. 

Any how we will be going back to see Dr. Evans in late March and will most likely have another round of botox shortly after.  I imagine they will also do Connor's hamstring too.  There is some tightness there regardless of all the stretching we have been doing.  But after the next round of botox if Connor is walking then we are going to get him right into Kennedy Krieger's CIMT program to make the most of the botox.