I'm not sure where to begin. My husband and I have a 14 year old foster son who has been living with us on a full time (residency order) from August 07.
We have known him for about 5 years on a part time basis - we would have him every other weekend and he slept over. He experienced some pretty big night terrors during this time, knowing nothing of them the following morning.
On June 1st this year he had a violent seizure on waking (about 6am) and was taken to hospital. He was released when blood tests showed all things normal.
He then had another on waking 4 weeks later and was taken off for more blood tests and obs. 3 weeks later he had 2 on waking was taken to hospital where he had a further 2 in a short space of time. He was kept in for 4 days and they did all tests MRI etc.
From this he was put on Epilim and the dose has been built up gradually to 1200mg per day. He had 2 more fits during the time the medication was being built up to the maximum dose. The first one we coped with at home but the second was more significant and he was hospitalised again.
Last Friday he had 2 more - however they happened just after midnight, rather than on waking in the morning. I was on my own as my husband was on a night shift.
I managed the first one ( I think!), but he went into a deep sleep immediately the body spams had stopped. I wasn't sure if this was a 'usual' thing to occur as it was the first time this had happened. I watched him and waited. Within an hour he had another.
This time it I was really frightened as he fought me. I couldn't get him onto his side and he was choking on the amount of fluid in his mouth. I felt absolutely powerless. I called the ambulance and got my husband home. He was taken into hospital where he had a smaller fit. They have increased his medication to 1600mg slow release Epilim.
We feel really scared about the Epilepsy. I'm terrified he's going to stop breathing when I'm on my own. The noise (vocal) sounds like nothing I've ever heard before and sends me into a complete panic! We aren't sure what he should be able do alone - for example ride his bike to a park about a mile away; stay at home alone if I go to the shop; or be alone if my husbands shift work means we're out of the house at the same time for an hour during the day.
The poor boy has had a rotten life and now he has to cope with this too - hardly seems fair, but he copes quite well. It's us that isn't coping as calmly - or rather me. I'm constantly waiting for the next seizure so I'm not getting very much sleep. We don't know a great deal about his own family - but we do know that his grandfather has ongoing Epilepsy and a cousin experienced seizures between the age of 14 - 18.
We would really be grateful to hear from anyone who can offer anything! Just to have contact with someone who understands would be fabulous.
Thank you in anticipation.