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Old 09-08-2008, 04:10 AM   #1
Join Date: Sep 2008
Location: Bristol, England
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janie56 HB User
Not sure where to begin....

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.

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Old 09-08-2008, 09:57 AM   #2
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SentenceDoing HB User
Re: Not sure where to begin....

I'm sorry this is happening to your boy.
Is he seeing a regular Neurologist? It sounds like the Epilim isn't working, since he's on a high dose and still having a lot of seizures. There are so many anti-seizure drugs out there now that can be used in monotherapy or in combination, that his doctor really should be trying other meds.

I know Epilepsy can be scary, especially for friends and family memebers who witness the seizures because they're the ones who actually see what's going on. The person having the seizure, if it's a gran mal, probably is unconscious and has no idea what is happening, and therefore it's less emotionally traumatic for them.

But definitely have the doctor try another med for him. Epilepsy can be controlled very well in most people with the right medication(s).

Good luck!

Last edited by SentenceDoing; 09-08-2008 at 09:57 AM.

Old 09-08-2008, 03:57 PM   #3
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Location: Beaver Falls, PA
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valeriedl HB User
Re: Not sure where to begin....

I agree that he should probably be seeing a neurologist if he isn't already, it does sound like the meds he is on now aren't working.

Another thing too is that you mentioned that he fights you when he is having one. Other than turning him so that he doesnt choke, there is nothing you should do. Don't try to hold him down or stop him from shaking. Just make sure that there is nothing that he could hit or fall on him that would hurt him.

Old 09-08-2008, 04:39 PM   #4
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Re: Not sure where to begin....

Sorry to hear, I must defenetly agree with the urgency of having a Pedriatic Neurologist check him out and do the necessary test so he might be given the correct medications to control these attacks. Give him space when he is having these attacks, but stay close enought to protect his head from hitting anything. Also keep a dairy starting now of every seizure he has, times, body movements and personality/mood changes as accuratly as possible which is helpful for the neuro to understand what type of seizures he has. Make the appoinment asap, and keep us posted

Old 09-09-2008, 05:09 AM   #5
Join Date: Sep 2008
Location: Bristol, England
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janie56 HB User
Re: Not sure where to begin....

Thank you all for replying. It felt good to know I'm not out there on my own! We have made an appointment to see the paediatric neurologist. I will let you know what happens.

Old 09-10-2008, 08:01 AM   #6
Join Date: Sep 2008
Location: uk
Posts: 3
tracyxx HB User
Re: Not sure where to begin....

hi janie, my daughter has night time sz(fits) i know how you feel it aint posting this to let you know that you can get alarms for sz they can either alert you or a freind if your out that your son has/is having a sz, or a medical team, i have a bed alarm on my daughters bed that sets a pager off that i carry or keep by my allows me to relax a bit better knowing i dont have to keep 1 eye n 1 ear open....type in epilepsy alarms into google it will come up with all the info, i cant post a link on here....hope this helps a lil bit
good luck.xx

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