As we spend more time living with a child with Duchenne muscular dystrophy, we constantly become more aware of exactly what living with a condition such as this entails. I've mentioned in previous posts that using steroids is the only real method of slowing the progression (or regression) of this condition. I've also mentioned that as a result of using steroids, there are side effects that come too. One such side effect that we've become acutely aware of in the last couple of weeks, particularly, is that the long term use of steroids causes a lot of aggression.
I'm not sure if the term 'steroid aggression' is an actual term or if it's something that I've just coined myself, but it seems to be a fitting one for what we've been experiencing over the last couple of weeks. I also know of a lot of other people who have kids affected by DMD, who are using steroids long term, and are experiencing the same sort of problems. One family in particular; they've got a son that's very similar in age to ours, and in speaking with them, they've mentioned that their child is quite aggressive towards his sibling, and that's exactly the same pattern we're finding as well.
We're finding that a lot of the aggression is primarily focused towards his sister, which I find to be particularly distressing. She's completely innocent in all of this, but she's getting the short end of the stick. One of the difficult things about this is that aggression is not naturally inherent in our son. The aggression we're seeing at the moment is a result of the drugs, and I've mentioned in the past that the use of steroids is really important because it stops things like scoliosis and the need for spinal operations.
From research conducted, it's been proven that about 95% of DMD patients who don't use steroids will require corrective surgery for scoliosis, which is a horrible procedure to have to endure. None of us would like to see our kids have to go under the knife and have a spinal operation, let alone when it's a result of a condition such as DMD.
So anyway, what I was trying to say is that the the aggression we're starting to see as a result of these steroids is becoming quite scary, actually. And I'm not exactly sure how we're supposed to deal with it because it's a completely new thing to us. We've never seen this before. We've never experienced this before. And the problem with the aggression is that it's also it seems to be coming hand in hand with an obstinate demeanour as well. You can't reason with him. You can't try to explain that being this aggressive is not not appropriate and not acceptable. Any reasoning completely falls on deaf ears or he just doesn't understand, and again, that's another problem with DMD - the way the effects the brain. It effects cognitive functioning, understanding and things like that. So it really feels like a Catch-22. On one hand, you've got this child who has to have the steroids because if they don't, there's going to be massive, huge, horrible consequences for that. But then you keep giving these drugs to them and now you've got this child that is almost completely unrecognisable. So now you're faced with one of those questions of well, what do I do, what's the better option? And again, I've written about this and spoken about this on 3Speak previously, and it boggles the mind.
How are we dealing with all of this? Well, I'll be honest with you it's really really difficult. It's like walking this tightrope of not being sure whether anything you do or say is going to set him off because it's so unpredictable. We're unsure whether the way he will respond to any sort of event that happens around him will be positive or negative. I know that at school, he's really, really good. But the problem we're facing at the moment is that at school, he's really good. But then at home he's the opposite. There's no middle ground there. There's just those those two extremes.
So we're trying to teach him that there are good ways and bad ways to respond to what people do but I think the familiarity with his sister is sort of the biggest problem. He just lashes out at her all the time, and sometimes over very, very small, insignificant and unreasonable things. For example - she moves and sits next to him on the couch while they're watching television or something like that. So it's a really difficult sort of situation there - I need to protect my daughter, but also need to be reasonable to my son, with the understanding that he's not necessarily the reason for his disposition. Currently we're working with allied health professionals, analysing the best method(s) for dealing with these bouts of aggression.
It might sound trite, but something else we're trying is to just show him love through all of this and to teach him to hopefully understand that he can't be treating people this way. I think we're getting to the point where we're on the cusp of looking at how can we maybe alter the medication because we're not going to be able to let his outbursts get much worse than what they currently are because it's really it's very distressing for his sister. I don't want her having a lifetime of psychological problems and issues based on the way she's treated by her brother who's not actually in his own head.
They say that love can overcome everything. Love's a powerful emotion, but I'm not sure that it can actually overcome this. We're going to have to keep working with him. And keep working with people that know more about this than we do and hopefully, we'll be able to come up with a happy medium - something where he can get the medication he needs in order to be able to remain mobile and not have to suffer through scoliosis, but also we're going to need to be able to find something that is going to allow his his temper and his aggression to dial back to what is going to be more manageable and certainly more appropriate. Don't get me wrong - my son's a loving caring child, who has been dealt a bad hand and is really at the mercy of the condition he has (and the resultant steroids that hold it at bay). I just want my child back, but unfortunately with an incurable condition such as DMD, we have to learn to cope with what it is and find the best way forward.
