Medical,

The Dysport Dance

Mark has been wearing AFOs for just over a year now. They do wonders for him, they really do. The support they give his ankles is wonderful. He is able to have more control over his legs. He has better balance and a more stable gait (manner of walking). The point is, although the AFOs come with a lot of judgement and questions, they help Mark tremendously.

The downfall to AFOs is that as Mark continues to grow, he will continue to grow out of his brace. Another con to the AFO is that as Mark continues to grow, the muscle in his leg becomes tighter, essentially pulling his leg up within the brace- no matter how tight I make the strap. This causes his heel to rub against the back part of his brace leaving the potential for blisters to form after long exposure.

You see children grow exponentially. How do they grow? Well, the bones get bigger and longer. Basic science right there for you. Unfortunately, the muscles are much slower to catch up. This is why you hear of “growing pains”. The issue with Mark is that he is in a constant state of growing pains. As soon as his muscles start to catch up to his bones, he grows again and again and it becomes a never-ending game of catch up. The brace helps to hold his foot in a position to help his gait, and balance by working with the tightness in his leg- essentially holding his foot down in the shoe. What happens when the brace isn’t strong enough anymore? What happens if he goes back to walking on his toes soon after serial casting? So what can be done, exactly? Cue Dysport.

Dysport is another brand of Botox. Yes, the plastic surgery kind of botox. Obviously, we wouldn’t be using it for any frown lines or crows feet (all things I have). Dysport is injected into the muscles to alleviate the tightness- make them relax. This should give Mark the ability to gain a little bit more range of motion within his hips, legs, and feet. This should also help alleviate that constant growing pain he has been feeling.

As I type this, Mark is just 2 days post-injections. He received 4 separate injections on his lower legs to help with the pain. We should start seeing very clear results by day 5 and on day 14, we begin serial casting once again to help make that stretch a little more permanent. If it shows some improvement, we will likely be back in the doctor’s office in 3 to 6 months for another round of Dysport. It will likely be that way until he is 3 and a half.

I am hopeful the Dysport will work. The appointment itself was very stressful. Mark had a stomach issue going on which later involved a full diaper in the doctor’s office. On top of that, the shots are administered directly into the muscle tissue which can be painful for a 2-year-old. Mark cried quite a bit and it broke my heart. He bounced back pretty quickly when the doctor offered him an array of toys from the treasure chest.

Mark had his final soccer practice of the season just hours after the injection. It was very clear he was feeling the effects of the Dysport. He would hold on to anyone and anything nearby. He seemed unsteady on his feet and was moving a little slower than usual. But he also seemed to have a better range of motion in his ankles. These are all things I noticed from that one practice. Even today, I watched him as he rolled his ankles and lifted his more involved leg onto his lap.

I feel like I have to have hope in these injections. I know they are incredibly uncomfortable and painful for him right now but the next steps, should this method of treatment not work anymore, are far more painful. We will discuss those if it ever comes to that. For now, I am going to keep my head up and keep working with Mark and his therapist to help him as best as I possibly can.