Exactly one year ago today, Luke’s consultant made the decision that the time was right to start Luke on steroids. There would be tests etc to do first but the decision was made and steroids would become part of our lives in just a couple of months.
I’ll admit, I didn’t take it very well and it would be months before I would fully accept it. I thought we would have had at least another year to prepare for this next stage of our Duchenne journey and to keep Luke’s little body free of drugs that had the potential to do more harm than good. But Luke hadn’t really gotten any stronger since his last appointment and research does show that ‘if’ steroids were effective for a child with Duchenne then the younger they were started the better. So why the big deal?
Ever since Luke started his steroids many people have said to me that either they or their kids were taking steroids for this and that. The difference though is that Luke and other boys with DMD are not on steroids for a day, a week, 6 months or a year. It’s for life and it’s the only treatment option they have. Do you know what long term steroid use can do to a child? Well here are just a few of the side effects that most children will experience:
- Stunted Growth – as if living with Duchenne didn’t already make kids different from their peers, those on steroids will also have to deal with the implications of being much shorter than their peers
- Poor Bone Density – Children with DMD already have low bone density, add steroids to the mix and you essentially have brittle bones. Put this in the context of Duhenne where boys rarely recover from broken bones, and that poor bone density can be a life shortener, considering the link between the age they go off their feet and life expectancy
- Weak Immune System – Steroids directly affect the immune system leaving children with Duchenne open to all sorts of infections and even a simple child hood illness like chicken pox can be life threatening. This weakened immune system puts life expectancy in danger as the kids are more susceptible to pneumonia, which their weaker than average lungs will find difficult to fight
- Emotional & Behavioural problems – The difference in Luke’s emotions and behaviour are startling clear when he is on steroids. On his days on he can be uncontrollably giddy and happy one minute but the next something that normally wouldn’t bother him will set him off on a crying fit that it can be difficult to get him out of
- Danger with anaesthetic – General anaesthetics are extremely dangerous for a child on long term steroids and simple operations like getting their tonsils out put the child at extreme risk
- Moon Face – Most children on steroids for long periods of time will develop a rounder face often called the ‘moon face’ and in most cases when I see a picture of a child with Duchenne I can instantly tell whether they are or aren’t on steroids just by the shape of their face
- Excessive weight gain – This is one of the more widely known side effects of long term steroid use and causes enormous pressure on the child’s bones, heart and lungs which are already weakened.
Indeed the reasons not to start steroids go more deeply than this but these are the reasons I was so afraid to start steroids.
But steroids create the ‘possibility’ that Luke will walk for up to 2 years longer than expected, they make it possible that he ‘may’ escape the need for scoliosis surgery in his early teenage years, they give him energy that he would not otherwise have had, and in many cases steroid use is a pre requisite for participation on a clinical trial. And so Luke started to take steroids early this year on a 10 days off/ 10 days on regimen and so far, with the exception of some emotional and behavioural issues and him not having grown much since, they have had a positive impact on his life. He tires less easily, he can climb a little better, he can move a little quicker and his balance seems a little better. I can’t see what they are doing inside his body but for now, his regime has kept many of the physical side effects at bay. He will move to a daily regime within the coming months and I know that this will change things. But for now, the decision to start steroids was a positive one and we will focus on that and the hope that they might keep him walking for longer and use all of Luke’s newly acquired skills to make his life as happy and abundant as possible while they last :-).