Posted 30 August 2011 - 12:23 PM
My 14 year old daughter has also been recently diagnosed.We went through all the extensive testing etc. but I knew almost right away something was gravely wrong.
She went from a go 24/7 kid to being found asleep on the bathroom floor or at her desk in school.
I am so very worried about my daughters' future!!
She was (like many others) a straight A student and very gifted athlete.She was actually chosen by the USA for National development in her sport. They picked the top 100 athletes from around the country to develop for National team.
I am very concerned as her cataplexy seems to have gotten worse. I fear she will be hurt on the ice or field if she loses control or that the thought of losing control will hold her back significantly.
I can't ask her to give up her sports, they are her life and she is already being heavily recruited. I feel we must exhaust every option before she gives up something that has been a big part of her identity since she could walk.
Her grades have suffered some as well.
We are thinking of trying Xyrem but also have worries over this
She is currently on provigil 200mgx2 and venaflexine 75mg
Any other Moms out there with elite athletes working through this devastating condition??
I am being torn up wondering how she will manage getting through high school and whether she will be a candidate for college,jobs,life!!
Posted 30 August 2011 - 10:18 PM
Good luck, let us know how things go.
Posted 31 August 2011 - 10:48 AM
Last season this did not happen.
Posted 31 August 2011 - 12:54 PM
The xyrem changed her life & is what made it safe for her to even get a drivers license. In terms of being a social kid, she does occasionally skip the xyrem if she's camping or having a sleep-over with friends. And as a college student, she was told never to take xyrem if she's had any alcohol. (She knows she needs to avoid alcohol & drugs because of her medication anyway.)
If you are worried that cataplexy could be a safety issue or derail her hopes for the future, it might well be worth trying xyrem. It is the only medication on the market to treat cataplexy (while the SSRIs help, it is not what they were meant to be prescribed for).
With the xyrem, justifying the need for a private room at college is a cinch, which makes keeping a sleep schedule easier. And careful class scheduling is also easier in college than high school. Even so, I still worry about my daughter getting through college, managing to work, etc.
Posted 08 September 2011 - 11:54 PM