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Help
Tue, 01/09/2007 - 18:48Topic: Parents & Caregivers
My 17 year old son has had epilepsy for 12 yrs and despite some early problems has been seizure free for about ten years on dilantin. Life was great, playing sport, reasonlby successful at school, girlfriend, car licence and recently a job and further training . Then in july 06 the doctor who should check his levels when he has a blood test every 6 months didnt. My son got wobbly slurred voice and poor cognition.When this happened 2 doctors said this was an inner ear infection (even though they were both aware of his epilepsy). He stayed like this for 5 weeks and we demanded another blood test after we looked on the internet and found inner ear infection and dilantin overdose are the same. Well we have spent 7 months trying to stabilize his levels. The problem is that although his cognitive thinking has improved greatly, he still staggers baddly, has lost 11kg (20 lbs) and is very weak. Cant play sport, girlfriend gone and job at risk. No doctor or specialist can tell us whether this will go away or not. Please is there anyone who has experienced this and can shed so light on the future for my son. Dean
Comments
Re: Help
Submitted by marlasinger on Thu, 2007-01-11 - 13:17
I really sympathise with you and your son, I can't add anything which will directly help you out but I just felt compelled to post this anyway. I am extremely mistrustful of all health professionals. I have temporal lobe epilepsy (I am 33yrs old) and I take NO medication because it just does nothing for me. In fact, if anything it makes me feel depersonalised and slightly psychotic. The same goes for any type of sleeping tablet and anti depressants. What I am trying to say is that much more research needs to be carried out with epilepsy and anti convulsants and if your doctor didn't carry out a plasma level blood test is he/she not negligent?
I am lucky (!) that I do not have a 'typical' seizure, (and I know this may not be the case for your son), I just cope with my seizures as and when they occur. The drugs we epileptics have to take are horrible, sedating and mind altering. I hope everything gets back on track for your son and if you feel like there has been an injustice then pursue it further and make a noise. All the best, MS
Re: Help
Submitted by angel_lts on Thu, 2007-01-11 - 11:51
Well this is not the same. But I was taking Dilantin and Phenobarbial. I was taken off cold turkey in the hospital with Topamax. Was put on a high dose of Dilantin to go home with while, I was still on Pheno. It was not the same, but the dilantin caused the Pheno level to rise up to 30 which I could have died. I had four young children at the time. No one knew what was wrong with me. I wanted to leave my husband and children. Hated everyone, and cursed everyone out. This went on for a few weeks then I realized there was something wrong. I asked to get off of Dilantin so we did. But it took several months before I was truely back to normal again. Well I am sure when the infection goes the levels will get stable again. take care Lisa http://www.sleep-safe.co.uk/id90.htm http://health.groups.yahoo.com/group/epilepsyapproah/