Anyone have a child/children with a seizure disorder?

Erica - posted on 04/22/2009 ( 3 moms have responded )

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My son has had seizures ever since before his 1st birthday they were all only about 15-45 mins long and then he had one right before his 3rd birthday that lasted 2 hours. That one caused major brain damage, and now he can't eat, talk, walk, or do really anything on his own. He was the best child ever. He was potty trained by 1 1/2 years old walking by 9 months and even all of his teeth came in way early and he didn't even cry when they were coming through. So I was just wondering if anyone else out there has had a child/children with seizure disorders so I could find out if I was the only mother having to go through something major. Also if you have children with other disorders I would really like to hear about it.

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Mene - posted on 04/22/2009

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My middle son had febriel seizures for about a year and a half. it started when he was about 2 and he wouldn't have just 1, he would have 2 within so many hours. It was awful. We had so many trips to the ER and they would tell me nothing was wrong but he continued to have them and after about 15 seizures within a period of time they finally admitted him into the hospital for a full work up and EEG and we talked to a neurologist and he said everything was ok and assured me he would grow out of them by the time he was 7. When i heard that it seemed like forever. That he would never grow out of it. He has been seizure free for 2 and a half years. I am blessed but I pray for anyone who has it worse. His seizures were brought by ear infections most of the time. He was in daycare for awhile but when i took him out he had 1 more seizure and that was the last one. I still fear it every time he gets sick.

[deleted account]

My future step-son began having seizures at around 9mos. They couldn't figure out the cause, but he also has severe brain damage from the seizures. He is 8 now, and many of the doctors he's seen have diagnosed him with Autism as well as some type of Epilepsy. Ethan's seizures are focal and we don't always see them. The last grand mal he had was about 2 years ago (thank goodness). No medication so far has worked to stop his seizures and they estimate that he has roughly 400-500 focal seizures a day. Because of his diagnosis of Autism, we do a behavior therapy called Applied Behavior Analysis. And it's really been helping. He's still non-verbal, but he's been feeding himself for about a year, he can dress himself with minimal assistance and he's even started attempting to wash his hands by himself. It's the little steps, but it's still worth it. I know it's hard, but Melissa is right. You are your child's best advocate and you are the person who is going to get the right kind of care for your child. If you want to talk further, please let me know. I have so much information on ABA and seizure meds (as we've tried just about everything.)

Good luck!

Katie

Melissa - posted on 04/22/2009

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I have a daughter who has Complex partial Epilepsy. I spotted seizure activity from 6 months but I did not know it was a seizure. The doctor told me it was normal and she had allergies. It wasn't until she had a major ear infection that I knew something was not right. I had a class in early childhood education and that is when I found out she was having seizures, there are many different types of seizures. You need to get him to a specialist in your area and be his advocate, He should be taking meds and after 3-5 of a seizure he should've had diastat to stop them,and of course be taken to ER even in ER they don't always know what to do. Keep all your drs. informed and keep a log of seizures, meds and all other info on you at all times. He may have a allergic reaction to some meds and you will need to write them down. My daughter has had many problems with the medical community locally so we go to Detroit to see Dr. Chugani who is the best in the state. I have alot more info but have to go to work so I hope this helps. Have a blessed day and contact me I have been through this too many times and I want to help. Melissa E. Muskegon Mi

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