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This vigabatrim is the anti-epileptic drug that I was on for a very long time compared to anything else. I was only 8 years old when I was put on them. I came off of them when I was 11. In a child’s development those are the years when their brains are still developing. If a child is put on those kinds of medications unnecessarily then it would cause more damage and make that child behind its peers at the very least. I found out that I was diagnosed with the wrong type of Epilepsy. I had a type of Epilepsy called Rolandic epilepsy which I would have grown out of. Only within the last few years a doctor who I went to as a second opinion after it all came out diagnosed it just by how my condition presented. He asked us a few questions and came up with the diagnosis. Basically I was put on medication that was never needed and it made me slow at school. As far as the medication Vigabatrin (Sabil) is concerned all the adverse effects listed I still experience. I always become agitated when I’m on my periods. That means it could have affected my hormones as that was the critical time when I started my period aged 10. I don’t remember being carefully monitored while I was on these. The key point to look at to do with this medication is where it lists it’s precautions ‘use with caution in patients with a history of psychosis, behaviour disorders or brain disorders’. I had a behavioural disorder unknown to them at the time. I was given this medication that may have contributed to my altered brain patterns. I don’t know this for sure. I’m not sure how to prove that it is partly to do with the effects of this medication I took. This is all the evidence I have for this one.

I wasn’t on the other medication for as long as the other one but still long enough to cause damage. I was never regularly checked while I was on these. I think I may have had an allergic reaction to these with is why I got taken off of them and put onto the other ones. I could have very well had brain damage as I had a bad accident at school where I smacked my head on the cloakroom floor. I can remember having a lack of co ordination when I did P.E which is why I hated it. That is also a symptom associated with Aspergers Syndrome. The fact that this medication could in fact cause death is a very worrying factor for me as I was on them at one point. Internal bleeding is something that would have been drastic for me as I already had a head injury before that point. I remember having a very bad skin irruption at one point. This isn’t the medication I was really concerned about.  Vigabatrim that I really think did the damage. I don’t know how I can prove all this but I know how I felt and remember that time when I was on the medication.

My heart goes out to everyone affected by the Leicestershire Epilepsy misdiagnosis and I hope you get your compensation. I know that however much money they offer me it’s never going to make up for what heartache I’ve been through because of how I believe it’s made me. I know two people from school who was treated by the doctor as well. I never found out whether they were misdiagnosed too. I know one of them still has Epilepsy and he’s got violent so he eventually got kicked out of college. It’s a real shame as I think the same thing might have happened to him. I know he’s had police involvement for certain things he’s done. I do think that this should be brought to the public’s attention which is why I hope that people will email in their stories. If they are that similar we have found a link. If that happens then I think the doctor shouldn’t be allowed to practice in another area. No one wants this to happen again. All the suffering that I and others went through wasn’t necessary. The doctor should have been responsible by saying that he wasn’t qualified enough to do the specified job. After all you have to remember that if you go into the medical profession you are dealing with peoples lives. You have to put yourself in their shoes and then you’ll know how frightened they sometimes get especially as a child. Having a seizure was very distressing and frightened me so much that I would never sleep at night. It was even more frightening when one side of me went dead. I was frightened that I’d end up paralyzed on one side for the rest of my life. I even don’t sleep well now because of the pattern it made me get into. I know it’s too late to say this now but in the future things could be done a lot safer. I feel that doctors should be reviewed every month who deal with medication. They should have a second opinion from someone more experienced when prescribing medication.

I hope that people will email assupportgrouponline@hotmail.co.uk with their stories. Maybe we could produce a book. I’m sorry to the people who went through it as I know how distressing it was and don’t think he should be practicing in another area.

By Emma Thomson