I don’t mean to be a downer on this post but I do think it needs to be mentioned that when you are thrown into this world of Special Needs Parenting (and by the way, the term Special Needs is on the way out – apparently the PC police are onto it… but that’s for another day… I CBF today!) So when you are a Special Needs Parent it can seem everything you do, is all in vain.
Last October, Mr Danger had his in-house EEG down at the Austin Hospital in Melbourne, undercover of the Brain Research Institute and the results weren’t great. In fact, his EEG showed that nothing had improved. The fire was still smouldering on the left side of the brain, and was continuing to interrupt his right hemisphere from making great leaps of progress. Over the 18 months between his EEG at 3 years and the most recent one of last October, he didn’t seem to make a great deal of cognitive progress.
Of course, being his parents, we have seen lots of different improvements and gains over that time. The problem is that the real nasty culprit, is hidden away – out of sight. It can only be detected by an EEG (which reads the signals of the brain) or MRI (which shows the white matter of the brain, which is damaged). Although Danger has many seizures, they are short and sharp, all are damaging to his young developing brain. In fact, they have been damaging his brain since he was 10 months old.
The medication he takes produce awful side affects – severe fatigue, loss of speech, inhibits cognitive progression and induces confusion. But they blanket the seizures which is what they are intended for.
Sadly, we didn’t make the Queensland trails for medical cannabis. We now know that brain surgery is very much on the cards for Danger this year. The time has come when everything we have done, the second opinions, the countless specialists, the flights to and from Melbourne from our home on the Gold Coast, the money spent on intensive therapy sessions, expensive suits and alternative treatments, countless AFO’s as he grows (I think we are about to go onto our 5th boot now, he’s had a big growth spurt!) have all been done with the intention of helping him and maybe slowing down the effects of the rare syndrome he has.
Two panels of specialists both here in Brisbane and in Melbourne, have agreed on the one fact, the damage has been done, and it is final. There is no coming back from that. It has been done, but we do have an option to remove that part of the damaged brain that continues to play havoc with his ‘good side’ and this will be a wonderful chance to give him the opportunity of cognitive growth and rehabilitation.
The conference we go to next month will help us with the many questions we have and the sheer curiosity of how other children and families cope with making such a momentous decision and how these children progress post-surgery.
It is not easy, but I do believe we have come full circle. The time of ‘wait and see’ is over. That can be very frustrating at times, when the advice is to ‘wait and see’. The fact is, if Danger continues with seizures he may have one that takes his life. SUDEP -Sudden Unexplained Death in Epilepsy – is quite high for children who have intractable epilepsy. It is in the back of all parents heads, that this nasty beast should take their child. It’s in the back of mine, all the time.
It seems so easy to make a decision when you put it like that – life or death. It’s almost black and white. But with everything in life, it is not black and white. However, the hope that we have is that the potential of this surgery will change his life for the better, even if there is loss at the start which is needed to be rehabilitated, and for a very long time to come. There is a very high chance that he won’t live in fear, like we do, of seizures striking.
The next coming months are full of discussions, research and more discussions. It is a very exhausting yet exhilarating position to be in. I looked at him today as we were back at horse riding and thought, like everyone who I meet tells me – he looks so good. So strong and full of life. He seems so fine!
It is a strange position to be in. It is what we can’t see that is the big problem here and which it has always been. So daunting because once we make and confirm our decision…. we all jump and there is no going back!