Anyone have any experience with epilipsy in children. More specifically Generalized Epilipsy(Petit Mal Seizures). Our son was just recently diagnosed with it and we are wondering if any one has any suggestions or anything else they might want to share.
Thanks to all that responded. My son is 7 years old and has been having seizures for almost a year. Because the seizures were so short and happened very seldom at first we thought he was "ignoring us". The first time we really noticed we realized that it wasn't that he was "ignoring us", it is like he wasn't there. It worried us but it was weeks before we saw another. We called a pediatric neurologist but it was going to be 3 months before we would be able to see him.(because there are very few here in OKC.) We were able to have and EEG done the next week. Before we saw the doctor he was having up to 10 30 second seizures per day. His EEG came back and he was confirmed as having Generalized Epilipsy. When we finally got to the doctor he told me he wanted an MRI done. Two weeks later we got that done and that came back fine. Because my mother, grandmother and aunt all have epilipsy the doctor figured it was genetic. My mother, grandmother and aunt all had grand mal seizures as adults and my son has petit mal seizures. He has been taking medication (Lamictal) for 5 weeks now. We have notice that he is having less per day, but still having at least 2 per day. We were told that he might grow out of these but that could be a while. He doesn't know when he has had one and when he does we just watch him to make sure he stays safe. He really wants to play sports ,but we told him he has to be on medication for a while. It is hard to explain to a 7 year old why they can't play sports, stay the night with friends or sleep on the top bunk of his new bunk bed he got just before he has his first seizure. Thanks again for all the advise. I'll keep you all updated on his condition.
Hi J., my name is P. (Pk works fine) my son Benjamin also has epilepsy ... petitmals also, although he'd had to grand mals.
I don't know how much I can help you, but I'll try. My son is now 14 his started when he was younger and does seem to be outgrowing his.
my email is ____@____.com
How old is your son? I am assuming you are seeing a neurologist. Have they done a functional MRI? EEG? Our daughter has hemimegalencephaly, where one half of her brain is larger than the other. She is in the high risk seizure category. There are several different meds that can control seizures. Are your son's under control or are they still adjusting meds? Your is your neuro? Ours in Dr. Abdelmoity at Children's Mercy. Email me at ____@____.com if you want to chat.
C.
J., we went through a similar situation--our daughter developed petit mal seizures at age 6. Like you said, for a while we thought she was ignoring us. Then we realized there was a pattern to it, and when we started paying attention to that, we noticed she was having them every 5 or so minutes, fo5 5-10 seconds each.
After first seeing our pediatrician, we went to Children's Mercy Neurology for the EEG. Our daughter was confirmed as having absence seizures and they prescribed Zarontin. We worked with Christine Klebes there...a nurse practitioner and wonderful to us. She said that many children who develop this at a young age will grow out of it, and that they prescribe medication for two years. After two years, the child is taken off medication and, in many cases, the seizures do not return.
We did just that...taking the meds for two years. We saw a complete elimination of seizures on Zarontin after two weeks. She is 9 years old now and we just took her off the meds last February. She's been seizure-free ever since! She went for a check-up recently and they (and we) believe she has a good chance of being seizure free for life.
I would encourage you to continue to ask questions and, if you haven't already, find a doctor that you feel very comfortable with and confident in. It took us awhile to do that and it made a big difference. We also contacted the local Epilepsy Foundation and got a huge packet of information. Most importantly, there's a list of doctors in there that specialize in epilepsy, and several pediatric specialties, too.
If you'd like to talk more, please feel free to email me at ____@____.com last thought--we spent a lot of time trying to help our daughter feel as normal as possible. So important and heart wrenching! Instead of her sleeping over at others houses, we had them at our house. She even decided she wanted to share her experiences with her class, so that they understood. These things went a long way to helping her feel some control over something that was in nobody's control.
Hi J.
I do not have any experience with epileptic children. However, my mother is epileptic. I grew up in a single parent home and being the oldest, I basically took care of her when she would have a seizure. I recently had my first child (a boy named Will) and I have constantly worried about him having it since it can be hereditary. What I can tell you is how the problem effects my mother. She lives, for the most part, a very full and normal life. She takes medication to control the seizures, dilantin, I believe. She is unable to drive due to the risk of her having a seizure behind the wheel. She was diagnosed when she was four years old, and since that was in 1960, treating her was very difficult. Now, the seizures are usually under control, and when she does have them, they are small interruptions in her activity. She'll be talking or something and she'll be cut off. Her head will bob slightly and there'll be a look on her face like she's not with us. But after a couple seconds she'll come out of it and continue with what she was doing before. On rare occasions ( about two-four times a year) she'll have a grand mal seizure, which is an all out body flailing seizure. What happens in this instance is that her head starts shaking and doesn't stop. If she's standing, she'll fall to the floor and her whole body just seizes somewhat violently. In this case, I will very carefully stabalize her head so that she doesn't do more damage to herself, but I never hold her down because she could tear tendons or muscles if I did. This faze of the seizure usually lasts anywhere from two-five minutes. Afterward, it's like she's almost passed out. When she finally does come around, she is in a state of confusion, almost like she's a child. She'll try to get up, but is not allowed to. She will ask for her "daddy" and ask who you are. She won't know the date or even where she is. This will usually last about five-ten minutes. She then slowly comes around and can get up at that point. Having a seizure like this is so exhausting that it usually takes her all day, if not a couple of days, to recoup. I just mean that she's really tired and sore after one. Also during this type of seizure, she chews up her tongue and her bladder usually empties. It's all really scary and I can appreciate how you must feel. What I really want you to know, though, is that although this sounds really aweful, it's not as bad as it sounds. Like I said before, my mother leads a really normal life. Most people don't even know she's is epileptic since the seizures usually happen when she's at home. In her case, she's by far more likely to have them when she's tired or stressed out. She almost always has them in the early morning hours. When I was a kid, I would usually be woken up by the sound of her having one around six in the morning. Her other "medicine" for the seizures is coffee. This problem effects everyone differently. Some children even grow out of it and I know that there are better treatments now than there were when my mother was growing up. I'm sure your doctors will lead you down the right path. Just ask a lot of questions and see a specialists if you can, that is, if you haven't already. Not knowing the severity of your son's condition, it's hard for me to know what steps are being taken. Just know that he has just as good a chance as most people to be a normal, happy kid. My mother is one of the best people I know. She's hard working and cares about everyone. I sometimes wonder if her disability played a role in the wonderful person she became.
J.,
I know it must be really hard to be dealing with seizures in your child. I know a teacher whose son started having them about the same age. They started seeing a chiropractor, and the seizures stopped....rather quickly. I can't make any promises, but here is a website where you can see some research
http://www.icpa4kids.org/research/chiropractic/epilepsy.htm
If you need a good referral, please let me know.
I am a teacher,too! I have a seizure disorder resulting from a head injury many years ago so when my son was diagnosed with the SAME type of seizure disorder we were perplexed. Not only were his spontaneous but we are not even genetically connected! However, the thing we made sure of was that we just made sure that it was no big thing. In fact I was teasing him and told him that this put a whole new meaning to the "stop, drop & roll" thing his Fireman brother teaches the school kids. He wears a bracelet all the time and the school is always kept aprised. It's just a fact of ife that we live with just like we would if he had diabetes. Hope this helps. S.
my name is H. and i used to have epilepsy. i had seizures.
as long as your son takes the medicine and gets about 8 hours of sleep he will just be fine. all petit mall seizures are that you stare in one place. i outgrew mine but it will always be there the doctor said. a good doctor in bloomington, illinios is Herman Dick.
Wow. no experience with children, but my mom had grand mal epilipsy. I remember at Kmart once they were testing the alarm system and she had a seizure. I have a friend who has a son who has seizures. I will ask her and get back to you with anything I hear.
____@____.com
