March 8, 2011

Botox, phenol or surgery! Oh, my!

Bertrand slacks-off while Mama changes his sheets. ;)
His depakote dose was increased to 250mg today.

This morning, Bertrand had a fantastic occupational therapy session during which his therapist summarized that B's biggest improvement the past few weeks has been in attitude. He is happy, engaged, willing to initiate, not as prone to overstimulation, persistent and forgiving. He hasn't really had any motor breakthroughs yet but, thanks to his positive attitude, she feels certain that breakthroughs will come.

That was followed-up by an appointment with Bertrand's rehabilitation doctor. Bertrand's right hip is subluxated between 50 and 60%. This is due to spasticity in the right adductor muscle because Bertrand doesn't stand. (As the old saying goes: if you don't use it, you lose it.) If Bertrand ever wants to crawl, walk, use his right hip, or even just not be in pain, we need to keep it from further subluxation. This poses a parent dilemma.

To deal with the subluxation, we have to deal with the spasticity or end-up in surgery. The surgery is a major one with a substantial recovery time. The other standard options for dealing with spasticity are botox and/or phenol injections. We know many kids who successfully receive them. Each has their pros and cons. The doctor feels that phenol would be best in Bertrand's case. Both of these injections will hurt. Both will wear off.

[And, in large quantities, both have killed millions of people historically. *Shudder*]

Obviously, I don't want Bertrand to lose his option to walk or crawl someday, or to be in pain, or for him to undergo a major surgery (with a long recovery time) to fix a problem that could've been prevented less invasively, such as through an injection.

So, I made Bertrand's phenol injection appointment for Friday of next week.

But something just doesn't feel right--call it my mommy-spidey sense.

Bertrand's subluxation hasn't worsened in 6 months despite a broken leg.

I think I want to give therapy a chance to work first.

I want to give Bertrand, with his new can-do attitude, a chance to do something without another painful intervention.

I know this will take dedication from more than just me.

It will take Bertrand's Daddy, and his Titi Saby, and his Nana, and his therapists, and his team at school... but Bertrand deserves a trial period.

Bertrand sees his orthopedist again in July. He'll get new hip x-rays then. That means just 4 months to get him standing at least 2 hours a day and to keep that hip from getting worse.

I believe he can do it.

Am I crazy?

We'll see in 4 months.


  1. You can do it and Bertrand can do it! I think that's a wonderful idea.

  2. Yay!!! Yay for hard work and good attitudes and the miracles that can come from that magic combination!!

  3. Botox is a type - a toxin produced by Clostridium botulinum and the toxin is used as an injection to cure hyperhidrosis or excessive sweating disorder. The toxin is injected into the epidermal layer of the skin and the injected fluid temporarily blocks the stimuli of sympathetic nerves. These nerves regulate the transpiration process and when they get more active, as a condition leads to undesirable heavy sweating or hyperhidrosis.