My 8 Year Old Diagnosed with Epilepsy, Any Advice??

Hi, I don't want to scare you, but it's important for people to understand that epilepsy is a serious and dangerous medical condition. My brother started having seizures at 16 years old and he passed away two years ago at the age of 21 from something called "SUDEP", which stands for sudden unexplained death in epilepsy. Basically his heart and lungs gave out after experiencing so many seizures. He passed away during the day, but many people, especially children, will pass way in their sleep. We've started a 5K to raise money for SUDEP research. You can learn more at www.paulsrunforepilepsy.org. Also, there is a new organization in Chicago called the Danny Did Foundation, named after a little boy who died of SUDEP last winter. They have lots of great information as well. Good luck!

I had epilepsy as a child as well-I was diagnosed when I was about 8. I had a seizure while we were traveling by car on a family trip and I was asleep in the backseat. My seizures had always been while I was asleep. I was put on medication and grew out of the epilepsy with puberty. No long lasting complications (at least I think so:)). They called my epilepsy Rhondolic (spelling?). I had one neurologist say that they thought it could have been caused by nutrasweet. I have avoided it since. Good luck to you. I know it was very scary for my parents back then-none of by friends really knew I had it-since the medication took care of it. They said that when I used to wake up with an upset stomach and headache, I probably had a seizure overnight.

Again, good luck!

My now 8 year old was diagnosed with epilepsy when she was 2. We started noticing her really jerking in the evening after she fell asleep. We asked our doctor and he wasn't concerned. Then one day she had a huge seizure that scared us to death (blue lips and loss of consiousness) He sent us to a neurologist when we were finally given the diagnosis. The first medicine we tried caused horrable side affects like aggression, moodiness and it didn't stop the siezures. So we switched neurologist and found one that was willing to work with us to try to get the right medicine with the least amount of side effects. She has now been off her medicine (per Dr's orders) for two years and is siezure free. Our neurologist was very helpful and listen to us so we were all on the same page. If your not happy with the first doc try another until you find the right one. Not every kid grows out of it but some kids do. What I found as a parent is that my child could do everything but it might require a little extra precautions. She was involved in swimming, baseball, ice skating, gymnastics. Be very open with your childs teachers. The epilepsy foundation will come out for free to your son's school and do a presentation to his class as well as inform his teachers/ nurse what to do if a siezure should occur. They also offer support groups for parents and special fun night so kids can get to know other kids and feel like they aren't the only kids with epilepsy. Also a medical alert bracelet is a good idea just incase you aren't around. If your child is going to a friends house or a birthday party make sure the parents are aware of his condition. Make sure he is taking his meds the same time each day and lack of sleep can bring on siezures to. Most importantly let him be a normal kid. As much as it may scare you if you don't you are going to drive him crazy. If you need to chat feel free to email me. Good luck

J.,

I was diagnosed with Epilepsy about 9yrs ago as an adult. They never knew what was wrong with me, just that I had a seizure and than had another one when I took myself off my meds a year later. Both happened when I was sleeping. So I thought I would only have the in my sleep. UNTIL 1 month ago when I had one in the shower (had been off my medicine for 1 1/2 yrs - per doctors recommendations). I am now back on my medicine, since I don't want anything to happen. You may want to look into a medical alert bracelet in case something was to happen and you were not around. A great website for information is: http://epilepsyfoundation.org/
You can sign up and go into different areas and chat with other people in the same situation as you....its great!!

There are conferences that can help by talking to other parents. My daughter started at 4 1/2 and stopped having seizures by 6 1/2. Keppra was nightmare for us and we took her off of it but other people thought it worked for them. She got them in her sleep which freaked me out. We put a monitor in her room behind the dresser so that I could sleep better knowing I would hear if something was going on. We also did an overnight EEG and sleep study. The biggest thing I can tell you is to realize YOU are his best advocate. Don't trust the Dr.s trust your gut. They aren't bad but they are seeing tons of people each day and Epilepsy is not cut and dried. It took 4 Dr.s at 4 locations before we found a good fit and she has been seizure free and medication free for 4 years! There is a lot of preliminary research that diet drinks can cause seizures in some people(happened to a friend of the family and her seizures have stopped since she cut out diet foods and drink). Good Luck, email me if you want to talk more.

Have him tested for allergies. My mom has had epilepsy since she was 3. They found that she was allergic to caffine and they brought them on more often. Also if she gets to much sun or run down she will have them. If her anxiety is high she will also have them. She was on meds when she was little but took her off of them when she was older. She hasn't been on meds for 30 years now. Mom has lived a normal life and as she got older she was able to tell if one was coming on and would be able to get into a safe place or get someone there to be with her. Now its still scary when she has them, but we all know what to do when she does... we can't do anything until she is done, but we are there if we need to call for help and help her get somewhere to lay down and sleep afterwords.

Watch to see if anything he did or ate brings them on at night, other wise let him be a normal child just watch him a little more carefully.