Newby with 12 year old

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Shirl

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Hello everyone. My son Jon has many sever handicaps that cause him to have seizures. He has had them all his life; everything from grandmal seizures to small focal seizures that come from 3 different areas of his brain. Jon is non verbal so it is harder for him to communicate with us. It has been hard for Jon. He has been in ER for over 2 hours with the doctors trying to get a seizure stopped and even worse they believe he was having sub-clinical seizures while sedated for up to 12 hours. He has been placed on so many different medications trying to get some control. Right now he is on Lamictal, Topamax and just started Vimpat and of course we have the Dialstat to give rectally to stop a seizure that is prolonged and have had to use it a few times. Once he is on a theraputic dose of Vimpat we will try to take him off the Lamictal. I would appreciate any support and knowledge that anyone has and am glad I found this site.
 
Hi Shirl, welcome to CWE!

My heart goes out to you. I hope you can take advantage of the support and empathy the members of CWE offer. We have many parents and caregivers here, as well as people with epilepsy. We have forums for venting ("The Padded Room") as well as places to find a laugh or tell a story. I hope you feel free to explore and post questions.

Best,
Nakamova
 
Hi Shirl Good to meet you (& Jon) - I know you'll find all the answers from the good folk here - they're better than any damn consultant, believe me - & if you want a laugh, give me a shout (even if it gets me in "trouble" with the 'Bosses'!) (promise 2 B HUD, Meetz x!)
Best wishes; Col
 
Hello Shirl,
Welcome here on CWE.
It's nice to welcome another mom who has a special needs son about the same age as mine. They do have more in common: my son's name is Joni. :) He is my eldest son, age 11,5 (his brother and sister, twins, are age 7 now.)
Joni has an epilepsy syndrome: the Lennox Gastaut syndrome, caused by post natal braindamage. Just like your son he has several handicaps: he is (mild) spastic, has a CVI, microcephaely, is mentally retarded. He doesn't speak, can't stand or walk, he's in a wheelchair and is 100% dependent on care by other people. But he can sit up by himself and is a very loving, laughing, happy boy; his mental development is about age 2 now.
Untill he turned 5 he suffered from many, many seizures each day, all types of seizures and his EEG was disturbed constantly. He has tried over 10 AEDs without succes.
At the age of five we started him on the ketogenic diet. In week one the diet caused a significant seizure reduction and by now, 6.5 years later, the diet still is the only treatment that helpes to control most of his epilepsy. He's not 100% zeizure free, he still has tonic clonic seizures now and then, but his seizures are reduced by 80-90% thanks to the diet and his EEG has improved >70%.
 
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Hello Shirl,
Welcome here on CWE.
It's nice to welcome another mom who has a special needs son about the same age as mine. They do have more in common: my son's name is Joni. :) He is my eldest son, age 11,5 (his brother and sister, twins, are age 7 now.)
Joni has an epilepsy syndrome: the Lennox Gastaut syndrome, caused by post natal braindamage. Just like your son he has several handicaps: he is (mild) spastic, has a CVI, microcephaely, is mentally retarded. He doesn't speak, can't stand or walk, he's in a wheelchair and is 100% dependent on care by other people. But he can sit up by himself and is a very loving, laughing, happy boy; his mental development is about age 2 now.
Untill he turned 5 he suffered from many, many seizures each day, all types of seizures and his EEG was disturbed constantly. He has tried over 10 AEDs without succes.
At the age of five we started him on the ketogenic diet. In week one the diet caused a significant seizure reduction and by now, 6.5 years later, the diet still is the only treatment that helpes to control most of his epilepsy. He's not 100% zeizure free, he still has tonic clonic seizures now and then, but his seizures are reduced by 80-90% thanks to the diet and his EEG has improved >70%.
Thank you so much Dutch mom. We are actually considering the ketogenic diet if this last seizure medication doesn't work. His nuerologist tells us the diet is very hard to do and has to be monitored closely. I am so happy that it is working for you and your son. My Jon is totally dependent on care from others too and in a wheelchair. Again thank you for sharing; it gives me hope as we go forward.
 
Hello Shirl
after your nice welcome message for me, I just wondered how you are ? Hope all is good with you.
 
Dragongiraffe,
We are actually doing much better at our house. I believe the Vimpat is going to work for Jon. I was a little surprised that he actually has had some small seizures since beginning it but I guess that too can happen as his body adjusts.
He is so much more alert which is a pleasant surprise. Whether this is from the new medication or just some good days, I'll take it and smile. LOL Hope all is well your way too.
 
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