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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.
Comments
Re: My daughter
Submitted by 1aussiemum on Tue, 2007-01-30 - 20:00
Hi I am new here but wanted to add as a parent I understand how hard it is at times and how good it is to vent in a forum where people can understand. While I hope that I will never be faced with your situation, the surgery sounds like a good option for your daughter and it is wonderful that her attitude towards it is so good. I hope it goes smoothly and is successful. Try and take some time out for yourself to rest and enjoy life, it isn't easy when you have had a week like you and your family has but it is important.
Sue, New and confused
Re: My daughter
Submitted by Dianne Augustine on Tue, 2007-01-30 - 20:18
Have you considered trying a ketogenic diet? Since surgery does not always work for everyone and then patients still looking for help try the diet then, why not try it first? Surgery is a more invasive therapy. I worked in surgery and hospitals for over 15 years and I will always advise someone to try the least invasive therapy before moving on to more aggressive forms of treatment. Half the patients who go on this weird diet no longer require medicine and no longer have seizures after going on it.
Here is just one link to many articles about it: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=16499771
God Bless,
Dianne Augustine
Re: My daughter
Submitted by Taylors_mom on Tue, 2007-01-30 - 19:50
I can definitely understand some of what you are going through. My daughter is 17 years old and has had seizures since she was 8 months old. My daughter has other medical problems as well. She has a rare chromosome disorder called Trisomy 9p. Her seizures were controlled with Dilantin until she was about 9 years old. Then she just stared having them more frequently. By the age of 12, she was literally in a vegetative state. We had previously tried the VNS implant and every seizure medication on the market. In 2003, she had a corpus callosotomy. Unfortunately, she had a stroke a few days later. I still consider it a successt though. While that still did not leave her seizure free, her seizures aren't as violent as they used to be. We still have bad days, upwards of 100-200 seizures a day However, they only last for 30 seconds to a minute. I know that my daughter will never be seizure free, but she is a happy and loving little girl and I do consider myself lucky that she is still mentally a toddler, so she doesn't really understand her problems. She just bounces back and continues on with what she was doing. Good luck to you and your daughter. Dawn, mom to Taylor Marie, Trisomy 9p & Lennox-Gastaut seizure disorder