My son (4.11) has just been diagnosed with a marked Chiari deformation (type 1) of his brain with associated syringomyelia and possible scoliosis.
Aside from the absolute shock I find myself in, I need to find a way to talk to my son about it and I have no idea how. I feel absolutely helpless.
He was hospitalised for the whole of half term for what was supposed to be a neck injury - not one person told us about the malformation (other than a subtle hint that something else was amiss) until this Wednesday gone - but that's an aside. My problem is that he developed an absolute terror of the hospital, of taking medicines (flatly refused anything other than calpol) and was generally extremely unco-operative. Due to his age (and non-cooperation!) he had to be sedated for a CT scan and have a GA for an MRI. He was out of his mind when the GA came and we had to hold him down whilst in the end they had to use gas as opposed to a needle in then hand.
My immediate problem is that he needs to go for another MRI after Christmas. Is there any way I can help him overcome is fears? How can I tell him?
My other problem is helping him understand why he is in pain and the subsequent horrific operation and helping him with the pain from that. How do I explain why all this is happening to him?
Are there books out there? I'm clueless and desperate and would very much appreciate someone's advice.