Deflazacort ™ is a steroid used in boys with Duchenne Muscular Dystrophy (DMD) to help preserve muscle mass. Mr. Sensitive has DMD, and at the age of 4 is in the ‘good part’ of this disease. As Mr. Sensitive gets older he will lose the ability to use his muscles. This is due to a deletion on the dystrophin gene, the gene responsible for muscle structure.
Muscle break down and rebuilding is a normal, natural event for everyone, except the child with muscular dystrophy. As Mr. Sensitive’s muscles break down, they will not be rebuilt properly.
Think about all the things you use your muscles for. To walk, to run, to talk. Think about the little things you use your muscles for – to eat, to blink, to breathe. Think about your heart beating – that’s a muscle too. What happens if your heart stops beating?
Mr. Sensitive is taking Delfazacort on our pediatrician’s advice. It sounds very reasonable – taking a steroid has some minor side effects but is effective in preserving muscle mass, especially the heart. We want Mr. Sensitive to live a long and happy life. We are committed to giving him Deflazacort – or are we?
When we first started giving Mr. Sensitive Deflazacort he stopped sleeping. So we started giving him melatonin to help him sleep. Fine. Problem solved.
Mr. Sensitive takes meds with chocolate sauce morning and night. He’s pretty good at swallowing bitter pills.
Then Mr. Sensitive sprouted more body hair, and we weren’t too concerned about that. Fuzziness is cuteness, after all.
Then we started to see behaviour changes, so subtle I thought I was making them up. Mr. Sensitive was always a very bright, intense child. High anxiety? Check. Inquisitive? Check. Hyperactive? Not so much, until he’d been on Deflazacort for some time. It’s made him so much more active, we can’t keep up.
One day I gave him his Deflazacort later than usual. Mr. Sensitive and I had been out, walking the dogs and he was tired. When we came in I gave him his medication, he sat on the sofa and watched a movie. Within 20 minutes he was off the sofa, throwing toys and dragging his sister across the floor by her legs. (ARGH- Dislocation risk!)
We talked to the pediatrician, who reduced the dosage. We talked to a social worker and behaviour therapist who gave us some ideas on teaching Mr. Sensitive to manage his anxiety, sensory issues, and the steroid rush.
Honestly, we have enough to deal with in a four year old who is like an anxious tornado, wreaking havoc wherever he goes. Never mind adding steroids to the mix.
After the morning where I was ready to call the Children’s Aid Society and have Mr. Sensitive apprehended, I knew it was time to take a break from Deflazacort. So we’re on a break, for now.
What are your experiences with steroid use and Muscular Dystrophy? Any suggestions? Please, please, please!