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My daughter
Mon, 01/29/2007 - 01:38Topic: New to Epilepsy.com
Hi my name is Mikki and my daughter's name is TJ she is 10 years old and has had epilepsy since the age of 2. She has all kinds of seizures and has been on 12 different medications. We are on last line drugs now. For the last 2 years we have had ok control of her seizures. She continued to have night seizures but they didnt affect her to much and then 3 weeks ago she started her period. This past Monday she started clustering pretty bad, she could not attend school the whole week and then on Friday she had over 100 seizures. I called the squad and at the hospital they gave her ativan by IV that helped. We were released today and they want to set up telemetry as she is being considered for surgery. They also put her on Klonipin (sp) and she is not having as many seizures now but she is soooo drugged that I know she will not be able to attend school again this week, she can not hardly stand on her own. They considered her for surgery 2 years ago but then her seizures suddenly stopped for 7 months and they decided to wait. As scared as I am about surgery I really hope they do it this time and so does she because she can not live like this. Going to the hospital all the time gets rough, as it is an hour away and I have 4 other children. She misses school and her friends. Everyone in her class is so understanding and have great respect for her. She is the bravest soul I have ever met in my life and is my hero. She is not afraid of surgery as she knows God is with her and he knows what is best for her. She is wise beyond her years. I guess I will wrap this up now thank you for letting me go on and on. We have had a very rough week and I just needed to vent. Thank you for taking the time to read this and getting to know me and my daughter. Good luck to all of you.
Hi Mikki, Your daughter is
Submitted by solis on Tue, 2007-01-30 - 21:44
Hi Mikki, Your daughter is very fortunate to live in a time when considerable medical understanding, equipment, & meds (for E) exist, plus the fact that partial seizure operations are now commonplace. Such was not the case when I was her age. I believe this change has evolved within the past 20 years. "Over half of children who go on the (ketogenic) diet have at least a 50% reduction in the number of their seizures. Some children, usually 10-15%, even become seizure-free. http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet.html As for dietary soloutions, 10-15% stand to become 'possibly' seizure free, whereas if TJ qualifies for surgery her 'chances' of becoming seizure free (while there is no gurantee) are far greater. After being on meds for decades, I had E surgery a year ago. So far, to my knowledge, no seizures. I'm now going off meds (outside a hospital) for the first time in my entire life. I'd recommend the surgery to anyone that qualifies. IMO it's a chance one is lucky to have. Mikki, I wish you ,and TJ, the best, Please keep us posted ~sol PS.. Welcome to both you & Sue