We fight to improve the lives
of everyone affected by epilepsy

Sharon

My son was born August 2000. At the time I was on 3500mg Sodium Valporate and 1000mg Pregabalin.

He was born with Secondary Spina-Bifida, Hydrocephalus, 2 cysts on the brain, vision problems, Bi-Lateral Hearing, Limb Defects, Bladder & Bowl problems which has resulted in him now having Urostomy & Colostomy bags, ASD, Learning Dificulties, and a lot more the list is just endless. It all adds up to Sodium Valproate Spectrum Disorder.

We coped as best we could over the years, but shock horror when he reached 18 adult life and turned round to me and said "Mum now i'm an adult can I ask you question I've always wanted to ask?" and asks you why he's like he is and why he can't do what other boys can do?

I will tell you now it breaks your heart when you know that you took a tablet that did that to your son and every professional you were under knew about it and never told you.

When I told him it was because of medication I took he went a full 11 days without speaking to me everything went through his dad and his dad is still the one who does everything for him now 18 months on, I don't seem to be asked to do anything for him now and it hurts.

I came off the Epilim because of this BUT I did it stupidly. I went into hospital for video telemetry and whilst in I completely stopped taking 3500mg of it by refusing to take and insisting to be put on Topiramate. I wasn't weaned off it because I couldn't stand looking at them tablets and hearing my son in my head saying "You did this to me!"

This doesn't just ruin the kids lives but ruins the parents lives too, we have too go through hell as well as our children.

Sharon
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