Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. The condition is named from the Greek epileps...
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Help with controlling my childs seizures
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My 5 yr. old son was diagnosed with epilepsy just before Christmas. We now know by piecing things together that he has had other seizures before his diagnosis. But once they came it was like the flood gates opened up & they were happening all the time. His neuro put him on Trileptol(sp?) as his first medicine and he is still having seizures though not as frequently. They are still frequent enough to leave me in a constant state of worry. I can't even sleep for fear something will happen. He had a seizure in the park yesterday which was one of the worst. I never thought he'd come out of it & those 9 minutes seemed like an eternity. After it is done & before he falls to sleep for several hours he picks at the ground with his fingers & does not recognize us in any way. I'm sorry this is long winded, but it is all so new. The doctor says he is as high as he can go on Trileptol & wants us to switch to Keppra. I am nervous because there have been no side effects with Trileptol. I would really appriciate any advice on how to handle any of this, it is a hard road.
Posted on 04/14/07, 12:04 pm |
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Hi Tobys mom
Try to keep in mind that there are aprox. 31 different anti-epileptic meds out there.. and sometimes it is trial and error to find the right med and or combination of meds and amount to gain contol over your sons seziures.. When your child is ill it is the hardest thing in life to watch them go through.. I am still waiting for a neuro appt. for my 14 year old.. he had one adnormal eeg and one normal..sigh.. But i am the one with epilepsly,, i have simple partial.. complex partial and cluster seziures.. i was dx in 2002 and am on my i think aprox 5th med change and am up to 3 full time meds with ativian to stop the cluster seziures.. In my opinion.. your one goal has to be to get your sons seziures under control,, with most epilepsly meds there will be side effects.. especially in the begininging.. but as your body adjusts to them the side effects will lessen.. But if you are uncertain then look for another neuro.. Here is a great web site that will explain in greater detail for you the anti-seziure drugs... and perhaps more info that you may need... hope it helps and hang in there.. http://www.epilepsy.com/epilepsy/s... Heather 
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I can't agree with you more Heather. Its terrible watching a loved one in that situation. Especially children.
I am an RN and work directly with children, and we get a lot of neuro kids in. I am sure the US and Canadian meds are similar. A lot of our kids are on Valproic Acid (Depekene), Dilantin (Phenytoin), and Phenobarb. I hope this may be some what helpful. Remember that you son requires his sleep after his seizures. Its amazing the muscle trauma one endures. Sleep is the bodys way of healing and protecting itself. Be sure to not stimulate your son when he is seizing (touching, holding hand, stoking his head, rubbing his back, that sort of thing. It tends to stimulate them more during the seizure and it could prolong it. Just make sure his surroundings are safe for him. Take care Kerrie
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I know what your feeling sleepless nights worry all day. My daughter 14 is going through the same right now. She was/is on Depakote went to Trileptil had a severe reaction to it and is now on Keppra which her only side effect is being tired so we have started off really slow. For the long seizures we have Diastat it stops her seizures (longer then five minutes) in there tracks ask his neorologist about it....Luv Ann
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Not reconizing you and picking at the ground are all normal Joann does the same she even tries to eat what she finds.
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I've been on both Trileptal & Keppra before. The side effects that are possible while on Keppra I didn't have. I was seizure free for 5 years. On Trileptal I had horrible side effects & was only on it for 7 months & that was too long. Now I'm on Tegretol which kept me seizure free for 3.5 years when I was first diagnosed.
Everyone is different. Everyone has some side effects as their body adjusts.
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I totally understand how you are feeling. My 5 yr old son had his first seizure right before Thanksgiving. It can all be so overwhelming. My son has been on Keppra since Dec. and it seems to work pretty well for him. My thoughts are with you.
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