Botulism: It’s not just for food poisoning anymore

“My grace is sufficient for thee: for my strength is made perfect in weakness.”  – 2 Corinthians 12:9

 

Patrick reading in his chair. He spends several hours a day here.

Patrick reading in his chair. He spends several hours a day here.

Patrick reading in his chair. He spends several hours a day here.

Today, I took Patrick to the rehabilitation clinic for a round of Botox shots. No, I’m not a crazy mother trying to improve upon the already near perfect cuteness of her child. This is actually a pretty well accepted medical treatment for dystonia, the muscle spasms that sometimes make walking difficult for Patrick.

The premise is simple. Because of the damage done to Patrick’s brain when his heart stopped, sometimes the signal to his right leg gets confused and instead of moving normally when he walks, the muscles overly contract and his foot turns inward, keeping his heel from lowering as he walks. The faster he tries to go or the more tired he is, the worse the problem is, and the more often he falls.

Yes, I’d hoped to have this done under sedation along with his bowel dilation procedure. But planning for the latter is taking forever and I didn’t want to delay the Botox any further. So, we opted to do the shots without any sedation in clinic.

So, today his doctor injected small doses of Botox into the muscles that were the most tense in his leg. The idea is that these strong muscles will be weakened, allowing the other, weaker muscles to be developed. The Botox will take a week to take effect, and then we’ll start some intensive physical therapy to work with the weaker muscles. The effects will last for about 3 months before they begin to wear off. We hope that at the end of that time, that the weaker muscles in his leg will be strong enough to fight against the dystonia. If not, then we can repeat the therapy.

It was an interesting process. First, his doctor stretched his leg, feeling for tightness there. Wherever a muscle was tight, she marked it with a pen. Then, she told her assistant what dosage of Botox she wanted, and they called down to get it from the pharmacy. It took about 20 minutes for it to be prepared, and then they came back to do the treatment.

I brought along Patrick’s doll, Tubes, to help explain to him what would happen. I asked Doctor Gooch to “give” the Tubes Botox shots so that Patrick would know what to expect. She was really cute pretending to give shots. She was so tickled with the idea that she instructed her assistant to go out and order two dolls just for that purpose in clinic.

After the explanation, we had him lay on his belly so she could reach the back of his leg. He was worried, but trusting, as I knelt face to face with him to offer comfort. They used a special machine that attached to the needle of the syringe to read the electronic signals in Patrick’s leg. I assume that this system helped them to confirm that the Botox was given in a muscle.

tubes-closeup tubes

Meet “Tubes” (pronounced “Boo), a doll that I added a g-tube and broviac line to to give Patrick someone to relate to, especially when talking about medical things.

I was SO proud of how well Patrick did with this. He worried when we asked him to lay on his belly, and then started to cry when he recognized the feeling of alcohol wipes preparing the skin. They used a “cold spray” to numb his leg, and then put in the needle. He got two shots in the back of his leg: one in the hamstring, one in the calf.. then one more in the muscle in front of his shin. Although he cried the whole time, he tried his best to hold still. And as soon as the needles were put away and we said he was done, he calmed down, accepted hugs, dried his tears, and even signed “thank you” to the doctor when they gave him a matchbox car as a prize.

And then, because that kind of good behavior deserves a reward, we called Brian and he left work a little early to meet us at the zoo.

Boy, was Patrick in a fun zoo mood today! He loved the new replica dinosaurs all over the zoo. He ran around happily visiting all of his favorite animals and places. And, as icing on the cake, we let him ride the carousel for the first time. You should have seen his face when the carousel started to move! He was so excited that we were on our third rotation before he noticed he was sitting on an elephant.

Carousel

Patrick’s first carousel ride. I don’t think he quit smiling until I told him he had to get off the elephant.

I’m proud to say that at the end of the day, I think he remembered the fun trip to the zoo much more than shots in his leg.

We’ll just hope that the next month of physical therapy will go as smoothly.

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