Monday, April 2, 2012

Botox, Baclofen, and Surgery Oh My!

Last week we traveled to Cook's for a consultation regarding Botox for Matthew.
This appointment has been long awaited, so we were eager to hear what the doctor thought.

Dr. A was kind of awesome.  He was cheerful and accommodating.  He wasted no time telling us his thoughts.  He even joined in when we made a "Yo Gabba Gabba" reference.

Sadly, there are not many doctors that will continue to sing "Get the Sillies Out," with you.

Dr. A was convinced Botox was needed.  We already figured that.

Though most of society travels to discuss Botox due to unsightly lines, there is a rare breed in the special needs community that travel to discuss Botox due to abnormally tight muscles.

The Botox blocks the transmission between the nervous system and the muscles, therefore relaxing the muscles.

 Matthew's arms are very very tight.  It has become quite hard to dress him.  The creases in his elbows stay pretty red.  Its heart breaking to see.  His neck muscles are fairly tight as well.  Though we aren't sure if the neck muscles are contributing to his elbows or vice versa, his neck muscles are starting to affect his daily life.  The other big problem area with Matthew is his hamstrings.

The doctor said we would definitely need Botox, and we are scheduled for an in office procedure using local anesthetic in the beginning of May.

The appointment was going along swimmingly.

Then the bomb was dropped.

Its not as if I wasn't expecting this conversation, but Dr. A acted as if it was no big deal.

And that "no big deal" was another surgery.

Dr. A thinks Matthew needs a Baclofen pump.

Baclofen is a medication commonly used to relive cramping and spasms.  Matthew has been on Baclofen before.  Sadly, we had very bad side effects when taking the medication orally.  Matthew became very relaxed.  So much so, that his oral muscles relaxed, and he started choking.

The difference between taking Baclofen orally and having a Baclofen pump is huge.

A Baclofen pump is a metal pump that stores and delivers medication through a catheter directly into the spine where the medication then takes effect.

Every few months we will need to have the pump refilled via a needle.  Every six to ten years the pump will have to be replaced.

And I think it was at this point I scooped my jaw up off the floor.  

Surgery always scares me.  Matthew doesn't respond well to anesthesia.  He likes to throw us some curve balls.

However, we do think this will be best for our little rock star.  It will improve his quality of life.  

And that's why we will go and speak to a neurosurgeon on May 10th.  Dr. A thinks Matthew needs this done relatively soon, hopefully by the end of summer.

We are very close to needing surgery to correct the contractures in Matthew's muscles.  The surgery would render those muscles useless after that.  Botox is generally only a short term "bandaid" fix to the problem.

So if all goes well, Matthew will get a new piece of hardware sometime soon.

Oh, and did I mention he starts school in a week??

When did he grow up so fast?

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