Imagine a 2 year old having these tablets every day.
And without a single complaint.
Welcome to James’s life for the past 5+ years, and still for a few years to come.
Every morning, without fail, James has his breakfast followed by his daily dose of steroids and supplements. 30mg of Deflazacort (a corticosteroid), along with Omegas, CoQ10, multivitamin, calcium, and Vitamin D drops. And he takes them without complaint. He knows that, without them, he will stop walking sooner. A harsh reality for a 7 year old.
When he was first diagnosed with Duchenne, we made the decision to immediately put him on steroids. He was 2 years and 3 months old. Initially, he had Prednisolone in liquid form. But he hated it. He also put on an enormous amount of weight very fast – 5kg in 2 months. So we made the decision to switch him to Deflazacort in tablet form.
Now, many parents would most likely wonder how on earth a two year old would take his tablets daily without making a fuss and spitting them out.
The answer is yoghurt.
We put his tablets into his yoghurt, and he swallows without chewing. Easy.
James has more tablets every day than most adults. And it has been our decision to give him these. Each tablet has its benefits, to help either counter the effects of the disease or the effects of the steroids.
Deflazacort helps give him the energy and “strength” to keep walking as long as possible. With many side effects (weight gain, behaviour, cataracts, reduced bone density, stunted growth – to mention a few), I know there are parents who refuse to go down the steroid route. But for us it was a no-brainer. Within months of going on the “roids”, he was climbing up and down steps, running, jumping, and riding his bike. The change in his physical abilities was amazing.
Unfortunately, it has come at a toll. At 7 years of age, he weighs close to 40kg. He also has increased behavioural problems, and many meltdowns. He is often rude and abrupt, and lashes out at anyone nearby when he’s upset (which is often). How many of these behavioural traits can be blamed on the medication, I am not too sure. Let’s face it – he’s a 7 year old boy with a rapidly failing body. He wants to run with his friends, and play rugby. He wants to keep up with his siblings. He wants to walk and not be pushed in a special needs buggy or wheelchair. It’s understandable that he would act out, that he would get angry and lash out at the closest person. I know I would.
Would I change things if I could do it all over again? Absolutely not! Whilst it has affected his behaviour, it has also allowed him to do so many things before his muscles fail him for good. He has played touch football with his schoolmates, he has gone snow skiing, he has ridden his bicycle for hours (even riding faster than his sister), he has scootered along the beach, he has swum for hours in the pool. He has done many things that a normal little boy can do.
But time is now running out. His body is deteriorating fast and no drugs will slow it down. This is the downhill slope that we all fear, those of us whose children have Duchenne. We now attend 3-monthly visits to the hospital, with a horrible feeling in the pit of our stomach, dreading the news that he has deteriorated from the last visit, or that he has developed cardiomyopathy and has to go on heart meds.
And so, each morning I still give him his drugs, hoping that they may keep the shitty disease at bay just a little bit longer.
I know it’s futile now, but I keep on hoping.
Just so that he may have one more day of riding. Or one more day of jumping. Or one more day of playing rugby with is mates.
One more day – that’s all I ask for. And so does James.