Stephsmom98
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Hello everyone. I am glad to have found this site. We are struggling and I could use some help and encouragement. I have a 10 year old DD who was diagnosed with epilepsy at age 5. We decided to homeschool even before she was in school. It worked out because she started having seizures when kindergarten age and she would have missed the beginning. She was under control with Neuronton and Trileptal. After two years, her EEG seemed clear so they started weaning her completely off Neuronton and that happened. Then as she was being weined off Trileptal, seizures returned at night and a few day time ones. Since her EEGs were still clear, the neurologist said she was having psuedo seizures that looked like actual seizures, but they weren't epileptal because EEG didn't show electrical brain wave problems. They kept getting worse until she ended up in the hospital twice with constant seizure activity.
After all that, she was sent to Children's Hospital of Philadelphia to do an overnight EEG which showed Epilepsy. We are upset that it took so long to get them under control. They put her on Lamictal and we are starting slow because of side effects. They are getting a little better, but are still there. She cries and gets upset when she gets them and no one gets any sleep. They distrupt her sleep. She only gets this kind at night. They are complex/partial but they start deep in the left part of the brain and go back and forth between the hemispheres.
With seizures and no sleep, she has much difficulty with school. Concentration is poor, she also has ADHD, she forgets what she learns and even forgets simple things and neat things she has done in the past. We are worried about her memory loss and learning issues. She also has behavioral problems. She is very impulsive, gets angry when challenged, challenges us and all adults that are trying to help her, she has Asperger's and OCD. We aren't sure how to help her. They say it is mostly because she can't sleep well, but we are all struggling with her behavior. She gets into trouble a lot and she was never like this before. Despite all this, she is a sweet kid. You can tell she wants to please, but can't really emphathize with you. That is probably another issue. Despite what all the doctors say, no one can clearly take direction here and help us and tell us what to do about the no sleep. I guess we just have to wait to see how Lamictal works for her. We tried other medications for the other issues, but they don't seem to work as she has a sensitive stomach and she gets sick on most things
Any advice or encouragement would be greatly appreciated. Sorry this is so long. And, those with children or teenagers with epilepsy, does it affect your/their schoolwork? What do you do about it?
Thanks so much.
Stephsmom:dontknow:
After all that, she was sent to Children's Hospital of Philadelphia to do an overnight EEG which showed Epilepsy. We are upset that it took so long to get them under control. They put her on Lamictal and we are starting slow because of side effects. They are getting a little better, but are still there. She cries and gets upset when she gets them and no one gets any sleep. They distrupt her sleep. She only gets this kind at night. They are complex/partial but they start deep in the left part of the brain and go back and forth between the hemispheres.
With seizures and no sleep, she has much difficulty with school. Concentration is poor, she also has ADHD, she forgets what she learns and even forgets simple things and neat things she has done in the past. We are worried about her memory loss and learning issues. She also has behavioral problems. She is very impulsive, gets angry when challenged, challenges us and all adults that are trying to help her, she has Asperger's and OCD. We aren't sure how to help her. They say it is mostly because she can't sleep well, but we are all struggling with her behavior. She gets into trouble a lot and she was never like this before. Despite all this, she is a sweet kid. You can tell she wants to please, but can't really emphathize with you. That is probably another issue. Despite what all the doctors say, no one can clearly take direction here and help us and tell us what to do about the no sleep. I guess we just have to wait to see how Lamictal works for her. We tried other medications for the other issues, but they don't seem to work as she has a sensitive stomach and she gets sick on most things
Any advice or encouragement would be greatly appreciated. Sorry this is so long. And, those with children or teenagers with epilepsy, does it affect your/their schoolwork? What do you do about it?
Thanks so much.
Stephsmom:dontknow:
