14 year old daughter just diagnosed with JME

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I was born with a rare and often fatal birth defect (TAR SYNDROME). Seizures seem minor to me, looking back at my childhood. And she was a great support system growing up. The two times she saw me in a full blown seizure, my husband said she really freaked out.
 
Awe. Yea, she probably was just overwhelmed. I'm sorry you have more than one thing to worry about. I'm sure your mom did the best she could. :)
 
rcwalker said:
Chop456, I would truly love to talk more and will send a private email...I wonder if our daughters (and Tom's daughter?) would enjoy the friendship of emailing each other or being friends on FB? I truly think my daughter would benefit from some support of someone else going through the same thing. My main question here is (since it might benefit someone else) how is your daughter doing on the Lamictal XR? I am definitely in research mode and I agree with you wholeheartedly that it would be best if we can find a med that is safe for her to take when she eventually starts a family. Thank you for reaching out! :)
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Hello! There is a teen area on this forum. I am not sure how active it is. I would love to get our kids together to talk. I feel facebook may be a bit too public, too. I am hopeful that Paige will benefit from talking to others. The teen years are tough on kids as it is and now we add epilepsy to the mix and .. wow!

Paige has been doing well on Lamictal XR. Her neurologist specializes in females with epilepsy and assured us that Lamictal is a female friendly drug. We ramped up the dosage very slowly to avoid the dreaded rash. Paige did have some dizziness each time we increased the dose but it seems to have stopped now. She does still have a few myoclonics every 2 weeks or so - we are tracking to see if it has to do with her monthly cycle. She has been on her full dose of Lamictal for about 6 weeks and I have heard that it can take 2 months for everything to settle once you get to your therapeutic level.

Glad to have "met" you and am hopeful we'll keep in touch!
 
Tom - is your daughter using the teen forum on CWE?? I'd like for our daughters to connect!

Beth
 
There's an app for the phone called my days... it would help you track their cycles with there seizures. Might help.
 
Thanks!

chop456 said:
Tom - is your daughter using the teen forum on CWE?? I'd like for our daughters to connect!

Beth
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Beth,

I did not know there was the teen forum. Thanks for the info. will discuss it with her and PM you when she signs up. It is finals week, so it may not be for a day or three.

Tom
 
Tom, It's called the loft. It is only accessible by CWE members, so it is secure.

Paige has not signed up for CWE yet. Summer has started for her and she has been busy since school got out. She has not been too interested in talking about her E lately. I need to tell her summer band director tomorrow what has been going on and she is upset that I am going to tell him. She does not want to be treated differently. I am trying to explain to her that there are certain people that NEED to know what is going on.

Good luck to your daughter with her last days of school! I will try to get Paige to sign up for CWE. Take care, Beth
 
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