jakeybaby123
08-19-2006, 07:26 AM
Hi everyone....
My son was diagnosed with childhood epilepsy in March and was put on tegretol....He was fine until mid June when he had a tonic/clonic seizure after he became unwell and had a high temperature...Our Dr told us this was a break through seizure and he increased his dosage. All was fine again until this week when he got another temp and had another break through....these last about 3 minutes and as parents obviously worry us a great deal. Having spoken with our neuro and seeing our peadiatrician this week we have been told he will most likely be changed over to Epilim/Depakote.
I am very worried about starting a new drug....Tegretol works well obviously until he gets sick and then it doesnt seem to cover him....
Can anyone tell me if they currently take epilim/depakote and if they have had a positive experience taking this?
Thanks so much
Rachael....
My son was diagnosed with childhood epilepsy in March and was put on tegretol....He was fine until mid June when he had a tonic/clonic seizure after he became unwell and had a high temperature...Our Dr told us this was a break through seizure and he increased his dosage. All was fine again until this week when he got another temp and had another break through....these last about 3 minutes and as parents obviously worry us a great deal. Having spoken with our neuro and seeing our peadiatrician this week we have been told he will most likely be changed over to Epilim/Depakote.
I am very worried about starting a new drug....Tegretol works well obviously until he gets sick and then it doesnt seem to cover him....
Can anyone tell me if they currently take epilim/depakote and if they have had a positive experience taking this?
Thanks so much
Rachael....
Sponsor
aunti2egl
08-19-2006, 10:32 AM
I am on Tegretol and it has really helped me, as opposed to Carbatrol or Keppra, I have ver little seizures on it, but not nearly as many with Carb or worse ones with Keppra. I don't know if this will help you any, but when I would get sick, I would take meds for it, OTC or by RX, and maybe 5 or more days later I'd have seizures, my dr. had told me that my 'levels' were 'off' because of taking the meds, and so that is why I had seizures. Is that similiar to what your son is doing? I hope I was of some help to you.
I have a question, for you all out there. What are all the different kinds of seizures and what happens when you have them. Thanks in advance. :)
I have a question, for you all out there. What are all the different kinds of seizures and what happens when you have them. Thanks in advance. :)
neurowreck
08-19-2006, 03:11 PM
I was on Depakote for a while, but had problems with tremors, and my writing, which at that time , I did a lot of at work (now on disability for sz), so couldn't tolerate it. I was taking it for an autonomic disorder, not epilepsy. I've had good results with Tegretol, Neurontin(for autonomic disorder and sz), Klonopin, and Ativan for breakthroughs (auras hit, and I take a 2mg tablet); I'm sort of on Keppra - lol- had to back off to lower dose due to severe constipation. If the seizures your son has occur only when he's sick, that makes so much sense- fevers and infections are common causes of breakthrough seizures- I'd be leary of starting something else also-- would your doc be agreeable to a child dose of the Valium suppository (forgot the name), or another 'breakthrough' medication??? :confused:
SentenceDoing
08-19-2006, 06:39 PM
My physician actually told me a while back that when you get a fever, your metabolism speeds up, so the medication in your system is depleted faster and that I should take a higher dosage when I have a fever. But then, the first time I was sick after I started on my meds, I forgot he said that and I was sick with a high fever for a few days, and my auras got bad for a few days afterwards. So now when I have a fever, I take an extra dose of my meds each day that I have a fever, and that usually helps keep the auras down to only a few mild ones.
Maybe you can ask your son's doctor if he can try taking an extra dose when he has a fever.
Maybe you can ask your son's doctor if he can try taking an extra dose when he has a fever.
aunti2egl
08-19-2006, 09:27 PM
Neurowreck, how or what happens when you get put on disability for your seizures. I was always curious about that. What steps do you take, how 'far' do you go on disability? Thanks in advance. :)
neurowreck
08-19-2006, 10:47 PM
First, I was on my long term disability from work, that I paid into as one of my benefits. Then, I applied for social security, and because of intense documentation and repeated ER trips via ambulance, it was approved on the first application- that is not typical. I get the SSD, and the LTD pays the difference between my original LTD and what SSD pays, so I do ok...it's not like when I was working, and I don't have any medical insurance- well, I've got medicaid, but my MONTHLY "deductible" is over 1200 bucks- then medicaid pays, and no prescription help, so had to find Canadian meds and generic assistance programs, or I'd never be able to get them all. My plan is to move back to where I was doing better, get settled, and 'gently' get back into working full-time, if things settle down like they had been when I was there before (for 17 years.....a sz now and then, but could go months without them). I hate being on it , but am grateful for the benefit. I miss seeing coworkers, and feeling productive. Being at home, with no friends around here, has been like h*ll on earth. I really need to get home, but need to get more stable first.
By the way, I lived about 60 miles northwest of SA when I was doing well- that's where I want to go back to....love the Hill Country !!
By the way, I lived about 60 miles northwest of SA when I was doing well- that's where I want to go back to....love the Hill Country !!
aunti2egl
08-20-2006, 09:07 AM
Thanks for letting me know about disability. I feel 'bad', because compared to what all I've read, my seiz are a 'walk in the park'. I haven't had auras in yrs, I used to get them when I got migraines after I was 19, then one day the migraines stopped and the auras stayed, the way I have my seiz are so different. Usually I'll get a 'feeling' behind my eyes (does that make sense)?
Sometimes I don't get a warning at all. Usually too when I have a seiz nobody is the wiser unless I tell them, when I've had them before in front of my nephews while we were playing a game, they never knew, I just take a minute or whatever and let it be over then continue. But the last couple I had, they scared me. Before, I belonged to an epilep group and one of the posters said it sounded like I had temporal lobe epilep. Mine are very mild and controlled (somewhat) by meds, before I thought they were panic attacks for years, I'd tense up, not able to move, almost paralyzed like, my hand would tremble, and my mom said I mummbled. Anyways......those are what I have. As for the disability, my mom had been wanting me to go on disabil but I don't think that's an option.
As for SA, I like it, still getting used to it. LOL I'm really learning my way around. We moved down here two months or so ago from Ft. Worth and well I can say I love it compared to FW. LOL There is so much to do and see here. I love being able to see my nephews and niece whenever I want as opposed to maybe once a month. Now I just need a man. :) Take that back, want a man. How are you guys with relationships with guys? I've dated a couple that were 'freaked' and ran when I told them I had seiz. I'm divorced and when I finally did start to date again, it was hard, I actually dated 2 diff guys who didn't run when I anounced I had them.
Sometimes I don't get a warning at all. Usually too when I have a seiz nobody is the wiser unless I tell them, when I've had them before in front of my nephews while we were playing a game, they never knew, I just take a minute or whatever and let it be over then continue. But the last couple I had, they scared me. Before, I belonged to an epilep group and one of the posters said it sounded like I had temporal lobe epilep. Mine are very mild and controlled (somewhat) by meds, before I thought they were panic attacks for years, I'd tense up, not able to move, almost paralyzed like, my hand would tremble, and my mom said I mummbled. Anyways......those are what I have. As for the disability, my mom had been wanting me to go on disabil but I don't think that's an option.
As for SA, I like it, still getting used to it. LOL I'm really learning my way around. We moved down here two months or so ago from Ft. Worth and well I can say I love it compared to FW. LOL There is so much to do and see here. I love being able to see my nephews and niece whenever I want as opposed to maybe once a month. Now I just need a man. :) Take that back, want a man. How are you guys with relationships with guys? I've dated a couple that were 'freaked' and ran when I told them I had seiz. I'm divorced and when I finally did start to date again, it was hard, I actually dated 2 diff guys who didn't run when I anounced I had them.
teddie
08-20-2006, 02:18 PM
Epilim is a well established and very effective drug. I took it for centuries until I had to come off for reasons that had nothing to do with the drug. Dosage matters, of course, and you might notice some behavioural change - perhaps a bit more passive. The main thing is to check blood levels regularly over the first six months or so in particular as I think the kidney function has to be monitored.
jakeybaby123
08-20-2006, 09:31 PM
Thankyou all for your replies.....i will post again after seeing our Dr on Wednesday....
Thankyou so much...the support is invaluable when i feel helpless to my son and feel very upset and unable to cope....
Thankyou so much...the support is invaluable when i feel helpless to my son and feel very upset and unable to cope....