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6 year old son w/epilepsy & behavior problems
Mon, 06/28/2004 - 19:34Topic: Family & Friends
This is my first time on any sort of discussion format...but I need to talk to other parents of children w/epilepsy. My son had his first seizure about 3 years ago and up until this past year they were always during the waking hours. He is now having them during the daytime and more frequently. His medication has been uped significantly and we are having so many behavioral problems with him. I don't know what is related to epilepsy and what is just "him," I am also having such a difficult time letting him out of my sight, as I worry about him having a seizure when he is in a dangerous spot such as climbing or swimming and he is such an active boy. I would really appreciate hearing from a parent in a similiar situation. Thank you.
Comments
RE: 6 year old son w/epilepsy & behavior problems
Submitted by e_nuffofthis on Thu, 2004-06-24 - 15:43
I have a little boy too that is almost 6 and know how you feel. If the behavioral problems have gotten worse with the increases, then you can probably say it's mostly that. Depending on where the activity is in the brain, that can have an impact too. It doesn't sound like the increases have helped, you have advised your ped neuro? Maybe he needs a different med? Is your doc an epileptologist? Sometimes it makes all the difference when you find a pediatric neurologist that specializes in epilepsy. Swimming is very difficult, if they are not controlled you always have to have them within sight. You have to keep trying to find something that will control him 100 percent. If you would like to talk to more parents there is another forum at www.efa.org.
RE: 6 year old son w/epilepsy & behavior problems
Submitted by linalu on Fri, 2004-06-25 - 15:56
Thanks so much for the responses. My son Jack(6) is on Carbatrol....he takes 800mg in the morning and 800 mg at night. His dose was just upped(again) due to continued seizures. My ped neuro says that Jack metabolizes this medication very fast, as his levels do not seem to go up much after each dosage increase. His last level taken when he was getting 1400mg a day was 9. (therapeutic range is 4-12). We will check levels again next week after a week on this new dose. We are scheduled to see an epileptolgist in July, and although we have been very happy with our neurologist over the years it will be good to have another opinion. They both work in the same office of neurology at Cinncinnati Children's so they work closely together. We are also scheduled for testing with a Neuropsychologist in July to check several things including the behavioral problems which as I said are worsening and making our family life so difficult. My 3 other children are suffering as well. I appreciate any input as I am craving discussions with other parents. I can't seem to locate anyone in my city....I went to one support group and there was only a woman who had epilepsy and although it was informative, I need to talk to someone who is looking at this from the same perspective.....worrying constantly!!!! I am now wondering how I can let him go to the little nature center day camp I signed him up for, can he be left with even my very mature college babysitter, can he go to a friend's house or to Grandparent's for a weekend. I feel like it is a lot to lay on somebody, as we usually have to administer Diastat when he has a seizure, not to mentio the anxiety that I have when I am away from him. I must admit that I desperately need a break from him however as he has been so difficult. Well. I didn'y mean to go on and on...you can tell I am in need of support!! Thank you........
RE: 6 year old son w/epilepsy & behavior problems
Submitted by ktmn on Thu, 2004-06-24 - 15:35
hi, i have a 10 year old with e. his are mainly simple partials but i've seen a big change in his behavior too. i think some of it is the keppra, but i think alot of it is seizure activity. what med is your son on?i understand worrying about letting him do things. we don't let nick ride his bike right now because he has incidents of missing time and that could be dangerous. otherwise, we try to let him do whatever he wants. we live in florida and he swims alot, but i just watch him whenever he's in the water.try not to be too overprotective. i know it's easier said than done, but it's important to let him do as much as he can, without putting him in a dangerous situation. nick is also very active and it's hard.good luck. i hope this helped some.