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Epilepsy & menstrual cycles

Sat, 01/27/2007 - 00:36
Hi ~ I'm new here, just found this site. My name is Susie. I have a 16 year old daughter with epilepsy and cerebral palsy. The seizures started 11 years ago but we always knew that they were a possibility because she had some when she was born, and also because some people with CP develop seizures. Brittany is a gorgeous young lady and she knows it. lol I'd love to just be able to talk to her about her periods, but because of the CP, she is non verbal (considered by the docs and other "professionals" to be profoundly retarded). She is small for 16. She weighs about 80 pounds and is about 4'10" tall. (Hard to get exact because of the CP). She also is not able to always let us know when she needs to use the restroom so she wears diapers. She began having periods in Jan 2006 and has had them off and on since then. Longest time in between was 16 weeks. Shortest time was 2 weeks. So as you can tell, she is nowhere close to being regular. Her pediatrician has suggested putting her on Depo Provera, but I did some research and what I saw scared me some. The reasoning behind the Depo was to possibly keep her from having periods altogether. The main reason for trying to stop her periods is cleanliness issues. I admit that it's more for me than for her, but, darn it, it really grosses me out! And I am the one who gets to change her most of the time. Right now she is on Keppra 200 mg 2x daily; Clorazepate 3.75 mg 2x daily; and Gabapentin 300 mg 3x daily. We've tried most of the other meds out there for kids (depakote, tegratol, trileptal, topamax, zonegran, gabatril, and I know there's others that I just can't recall the names right now). During the last 11 years we have not found one med, or combination of meds that completely controlled her seizures. We're at the point where we're happy if she only has 1 a day. Right now it's even better, she only has had 3 to 4 a week for the last few weeks. But I have noticed that they increase in frequency and intensity during her period. Any experience with that? I know this is long, and I'm sorry, but I'm really needing some help/advice/support with this. Anything would be welcomed. Susie and Britt

Comments

Hi.. It is a known fact that

Submitted by solis on Sat, 2007-01-27 - 00:57
Hi.. It is a known fact that in some women seizures increase during monthy cycles. http://www.epilepsy.com/epilepsy/provoke_menstrual.html As for your inability to get your daughter controlled, I had the same problem for decades while I saw many, many neurologusts. Finally, my GP sent me to an epileptologist (a neurologist that specializes in epilepsy) & within months after doing so, I was completely controlled. wishing you the best, ~sol

Re: Hi.. It is a known fact that

Submitted by Boofly63 on Sat, 2007-01-27 - 15:56
Sol thanks for the link. I'll check it out a little later. Busy busy today. We have taken Britt to an epileptologist, and there wasn't anything they could do other that what we've already tried. That was a little disappointing, but I know that I have done everything I can to try to help her. I wish she could tell me more, but she can't so I accept that. Thanks again. Susie

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