Sunday, May 19, 2013

Questions we asked Mikan's Walking Doctor, Botox and Looking forward...

How long will it take for the botox treatment to wear off?

Will botox require general anesthesia?

How often will he need treatment?

What is the worse possible scenario regarding using botox in this way? Why does the internet describe lethal scenarios using botox on kids?

What should we expect in X number of years after Mikan's legs become immune to botox treatment (if we continue getting treatments)?

How much of a change in baseline flexibility and mobility will we see after the botox treatment has run its course?

How exactly does Botox get this effect within the leg?  How is that different from botulism? (AP Bio level of explanation related to neurons and acetlycholine here).

I asked Mikan today..."Will Anica need leg braces when she gets older?" His response...
"Yeah, not right now though."

Mikan will probably get a round of botox in his calf muscles in about a month (pending insurance approval).  His flexibility and stability have not much improved over the past period of months, therefore we are going to do a mildly experimental intervention to hopefully help him out.  The botox will be three small doses in each calf while he is under general anesthesia.

Jenna and I are very curious about how he views his physical instability.  He is starting to reveal glimpses of awareness with random comments.  Usually these are times he is discouraged.  I am starting to understand how it is going to be living the reality of having a son with CP.

Largely, he has been sheltered from the world to this point.  He will start kindergarten in August.  I feel like he is thinking about this type of transition as well.  I notice it mainly in the way he is eating. For the last two weekends, we have eaten out at a restaurant or at a large family gathering.  In those situations, he is much more likely to explore food options that are new and pushing his comfort level.  In my mind, I am picturing in his mind that he knows there is social pressure to eat more normal foods.  Therefore, he is eating in these contexts.

Based on his responses in these more socially pressed situations, I think he is going to be a school gamer.  Where the following phrase comes from his teachers, "He does what at home? We don't see any of that here at school. That's strange." I am already getting that vibe from his therapy school.

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