Hyperekplexia and Klonopin.

I don’t like medication that treats the symptoms and not the cause. That just isn’t how I roll. But when you’re dealing with a rare medical condition, your choices are limited. Funding isn’t there for research and there is no sense of urgency when so little of the population is affected. Our choices are limited. In fact, we have a single choice. Klonopin or nothing.

When he was 11 months old we choose Klonopin after he fell so hard he knocked himself unconscious. We choose physical therapy and a softshell helmet as well. The combination of all three increased our chances of reducing injury. Increased his confidence in being able to move his body without developing a fear that would keep him from reaching physical milestones.  

At age two, the Klonopin in combination with being two, was too much. He had fits of violent range. Anger. So. Much. Anger. We took him off. He still wore the helmet for another 8 months.

His falls were decent but no severe injuries. Then, last summer, he fractured his skull. Then he started kindergarten.  His environment was different. Harder and sharper. His activity level increased as he learned of the freedom that is recess.  

I first shared of his condition when he got stitches this spring. I can’t tell you how many calls I’ve gotten from the nurse this school year, how many times I had to leave work to give him the once-over. I can tell you it was too many.

After stitches above the eye we made an appointment with his neurologist to talk about Klonopin again. The appointment was four weeks out. Three weeks after the stitches above his eye I got another call. He sliced open the top of his head when he fell into the cubbies. Stitches again. Three weeks apart. The appointment we made felt even more important.

The appointment went well. We asked a lot of questions, got a lot of answers and raised our concerns for his ability to manage his emotions while being on this medication. We collectively decided to put him back on it as we agreed that if he was not able to tolerate it we would take him off. All we can do is try, right?

It’s been almost a month since putting him on Klonopin. He has been feeling the world very deeply but he’s not been angry and he has not broken into a fit of range. He is an emotional kid anyway. He thinks a lot, worries a lot. But he’s happy a lot too. I think the time I’ve put into teaching him to talk about what is upsetting him is coming in handy right now. He is able to put words to what he is feeling inside and sometimes he just doesn’t know why he’s sad, he just knows that he is. The fact that he can share that with me is a great thing.

We will stay on this path for another month, see how his body continues to adjust. He has fallen quite a few times since starting the meds. Each time he has gotten his hands out. So, we do have an improvement.

Choices like these are so hard. We, as parents, constantly choose for our children. But when we are making choices like this; medications with risks or risks of severe injury. It seems heavy.



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