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Huk
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 7/6/2007 3:54 AM (GMT -7)   
Hi All,
 
I am new to this group. My 5-year-old son was diagnosed with generalised seizure two years ago and the Consultant wanted to put him on Epilim but we refused to do so as we have heard a lot of -ve things about it. My son's seizure usually lasted between 45 seconds to 1 1/2 minutes. He has no recollection of what has happened. The frequency of his seizure so far has been between once every 5 weeks to 14 weeks. Can anyone give us any advice on Epilim ? Does it have a lot of bad side effect on the child?
 
Thanks
 
Huk

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/6/2007 1:45 PM (GMT -7)   

HI there,

Im not sure about children, but my mum took Epilim when she was about 37ish. (Memory is a little fuzzy tonight!) She didnt get much control from it and was changed to Lamictal (Much better). I think Epilim is starting to become old fashioned like Dilantin is but thats just an opinion. I take Carbamazipine and have found that has served me well but the meds are individual to different people. Your son may get on well with Epilim where my mum didnt.

Keep us posted

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Huk
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 7/9/2007 1:14 AM (GMT -7)   
Thanks Darren. We have four weeks to decide if we are putting Caleb on Epilim. We will keep you posted. In the mean time we would appreciate as many responses as possible.
 
Huk

Djonma
Regular Member


Date Joined Aug 2005
Total Posts : 285
   Posted 7/27/2007 11:11 AM (GMT -7)   
I was on Epilim for a year, for Bipolar, and I gained a LOT of weight.
I'm physically disabled though, so I can't do cardio exercise, whereas your son will hopefully be able to run around as all kids do.
I really liked the Epilim though, apart from the weight gain, but that was the control it gave me over my bipolar, which is obviously not what you're after.
But it really controlled my flashing light / sound issues, which I'm now addressing (just posting to this forum for the first time!).

Nicola
Thoracic Outlet Syndrome from birth - Diagnosed 1999
Fibromyalgia from birth - Diagnosed 2005
(?) Ulcerative Colitis - waiting for tests
(?) BiPolar
Thrombocytosis

Epilim Chrono 1500mg at night (Sodium Valproate)
Lofepramine (Feprapax or Gamanil) 70mg at night.
Quetiapine (Seroquel) when needed.


Huk
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 7/30/2007 1:21 AM (GMT -7)   
Thanks Nicola. I am glad it is working out for you. We still haven't decided to put him on it yet.

smellybelly
Regular Member


Date Joined Oct 2007
Total Posts : 40
   Posted 11/4/2007 9:48 AM (GMT -7)   

Hiya Huk,

My 3 year old daughter was diagnosed with Epilepsy about 3 1/2 months ago now and they put her on Tegretol first iof all otherwise known as carbamazipine.

First of all the seizures seem to slow down, by the time she was on her full dosage the seizures staring coming thick and fast and Ellie was very very drowsy, she was laying on the sofa at 9am in the morning not wanting to do anything or go anywhere and come 3:30pm she would fall asleep on the sofa and that would be it till the following morning around about 6:30am.

The consultant then prescribed Epilim.

We have been on it for 2 months now and I haven't put her on to the full dosage yet as after the first 2 weeks Ellie;s behaviour became increasingly challenging.

It seemd as if it were a side affect of the Epilim, although it could just he her age.

However they are now going to change us to another medication this wednesday.

We shall see what this brings.

Again the Epilim did seem to work at first and the seizure were not as frequent but they are becoming frequent again now 4+ a week.

I suppose the medications are so different for every person, and I was told that they use Epilim for children with behaviour problems, but his is causing behaviour problems for us.

Good Luck with your choice of medication.

Alls the best.

Dee

 
Ellie's Epilepsy
 
I have set this blog up in an effort to find out more about Epilepsy, it's effects on behaviour and anything else related. My 3 year old daughter has recently been diagnosed with Epilepsy and in a bid to help us and her better deal with Epilepsy and it's effects on everyday living, I intend this to become a valueable resource to anyone else affected by the condition.


Huk
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 11/5/2007 2:48 AM (GMT -7)   

Hi Dee,

Thank you for your posting. My son started on Epilim 6 weeks ago. He was on 2.5ml twice daily for the first two weeks and now he is on 5ml twice daily. He seems to be okay and there has not been any seizure since. He has been quite challenging alright. I don't know if it is the medication or just him. He is 6. Yesterday, he was wilfully disobeying me for a couple of times and I had to administer proper punishment to stem that out. He is not allowed to go near the computer until Wednesday and he has been warned that one disobedient incident will cost him an extra day away from the PC! Initially we were reluctant to give him Epilim because of side effects that we heard about. Anyway, we will see. I hope and pray that the change in medication will work out for your daughter.

Keep up the hope and don't despair.

Huk


smellybelly
Regular Member


Date Joined Oct 2007
Total Posts : 40
   Posted 11/5/2007 2:54 AM (GMT -7)   

Hiya Huk,

The challening behaviour is obviously to do with teh Epilim.

We find it so hard to deal with, we need to sort out a punishment, because there is no way we can send Ellie to her room and leave her for 3 mintues or things like that incase of a seizure.

We will work it out.

I'm glad your son is responding to the medication I keep praying they will get the right medication for Ellie soon, she has had another seizure this morning on the way to school, so she is home again today.

She spends more time off of school than at school.

Hopefully this new medicine on wednesday will work.

All the best

Dee

 

 
Ellie's Epilepsy
 
I have set this blog up in an effort to find out more about Epilepsy, it's effects on behaviour and anything else related. My 3 year old daughter has recently been diagnosed with Epilepsy and in a bid to help us and her better deal with Epilepsy and it's effects on everyday living, I intend this to become a valueable resource to anyone else affected by the condition.


Huk
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 11/5/2007 5:44 AM (GMT -7)   
Dee,
 
I hope the doctor will find the medication that will work well with Ellie. The poor little angel. My son has no recollection of what had happened to him. When we told him that he had to take medicine. He just asked 'What is wrong with me?' It break your heart when you see kids going through things like this. Noone can understand except parents who are going through it. We will keep Ellie and your family in our prayers.
 
Huk

Canda
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/2/2008 3:17 AM (GMT -7)   
Hi all, I'm new to this. My 10 year old son has been on Epilim Chrono since June as Lamotrigine didn't work. Now he's on both with a view to phasing out Lamotrigine. No real behavioural problems but he has no energy and if he does exert himself and gets hot and sweaty he get nauseous and occasionally vomits. But this only happens in the late afternoon. (It also happens if its a very humid day so I am wondering if its due to dehydration and does he need to drink more)
 
While he's been on school hols its been managable, but I am dreading how he will be when he goes back to school. He also has a school trip coming up involving 'adventurous activities' (he will have one to one supervision though) but I just don't know if he will be up to it now. He gets very very tired. So Dee there is a similarity with your little girl.
 
Its also been discovered that he has low levels of creatinine in his blood tests which our consultant is pursuing as a possible link or a factor in the epilepsy, but this is a newish discovery. That's something that athletes who fail dope tests have high levels of in their blood - low levels have also been found to be linked to ADHD and other behavioural issues -especially in boys (which I am so glad to say isn't an issue for my son) Its such a minefield!
 
You are so right Huk when you say "No one can understand except parents who are going through it."  Would be interested to hear of anyone else going through the nausea/vomiting problems as that's by far our most trying symptom right now. Although I wonder if we are in store for other things as my boy is getting very down about it now, and says God is punishing him because he doesn't believe he's a good God. 'People pray for wars to stop and do they?' he says, 'no they don't, so he can't be good otherwise he wouldn't let these bad things happen.'
 
At least the seizures seem to have stopped. He was having one a week (they started last Xmas) but then after the first 5 seizures he did have a 5 week break, but then it was back to one a week. But now its 8 weeks since the last one. He gets them when he's over tired - the sleep EEG showed abnormal brain activity - anyone else had that diagnosis?
 
Wish all of you the very best.... Canda

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 9/2/2008 3:51 AM (GMT -7)   
Hi Canda and Welcome to HealingWell!

The fact that this only happens in late afternoons (When its hottest) and also when its very humid sounds like dehydration. Have you looked at his water intake to see what he drinks in a day? If not, then that might be a good think to check on before going back to school. It could be that the combo of meds is causing dehydration and when he comes of the Lamotrigine. I have not heard of people having dehydration problems on Epilim before but I dont have too much experience with the older meds. RE: Going to school, is it possible for him to take a bottle with him? If you explain to his teachers would they allow him to carry a bottle with him?

Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
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Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Canda
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/2/2008 4:35 AM (GMT -7)   
Hi Darren, thanks. Yes I plan to send him in with a note for the teacher about a bottle of water, and I need the teacher to remind him to drink it! I have emailed his consultant about it today (she's good in that way, you can call her when ever you need to) so hopefully she will come up with some possibilities.
 
Thanks again...
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