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Daughter diagnosed w/Juvenile Myoclonic Epilepsy
Fri, 01/28/2005 - 03:40Comments
RE: RE: RE: RE: RE: Daughter diagnosed w/Juvenile Myoclonic Epi
Submitted by missyphoebecolby on Thu, 2005-04-21 - 17:46
Thank you so much for responding to my situation with my daughter. Its so nice to know that I'm not alone. Sometime I think I'm having a more difficult time than my daughter; I know that I'm sounding selfcentered, today is just a bad day.
She has been on Mysoline for about 8 weeks now and has not had a seizure. This is good for her but she has been gain weight now. I am a single mom with few monetary resources and everytime I turn around I'm buying her new clothes. She loses weight on one medication and then gains on another. I am so frustrated. She has also gone through the the losing friends things also. Nobody calls her to do anything outside of school except for one friend. It is very depressing for her to hear that kids are out doing fun things and not inviting her. I'll be quite happy when she graduates from High School!
Is your daughter doing okay now? How old is she now? Is she able to work? and what medication worked for her?
I hope we can keep in touch and again, thank you so much for your response.
Jeanne Cyr
Thank you so much for responding to my situation with my daughter. Its so nice to know that I'm not alone. Sometime I think I'm having a more difficult time than my daughter; I know that I'm sounding selfcentered, today is just a bad day.
She has been on Mysoline for about 8 weeks now and has not had a seizure. This is good for her but she has been gain weight now. I am a single mom with few monetary resources and everytime I turn around I'm buying her new clothes. She loses weight on one medication and then gains on another. I am so frustrated. She has also gone through the the losing friends things also. Nobody calls her to do anything outside of school except for one friend. It is very depressing for her to hear that kids are out doing fun things and not inviting her. I'll be quite happy when she graduates from High School!
Is your daughter doing okay now? How old is she now? Is she able to work? and what medication worked for her?
I hope we can keep in touch and again, thank you so much for your response.
Jeanne Cyr
RE: RE: RE: RE: Daughter diagnosed w/Juvenile Myoclonic Epileps
Submitted by MIKESMOM on Thu, 2005-03-24 - 23:07
Hi,my name is sharon and i have a son who was dignoised with jme almost 3 years ago he has had about 10 grandmalseizures.we have tried depakote at first and it mad him sick,then lamictal for 2 years but it didnot stop his seizure .Andnow he is back on depakote they say it works best for jme we will see.
Hi,my name is sharon and i have a son who was dignoised with jme almost 3 years ago he has had about 10 grandmalseizures.we have tried depakote at first and it mad him sick,then lamictal for 2 years but it didnot stop his seizure .Andnow he is back on depakote they say it works best for jme we will see.
RE: RE: RE: RE: RE: RE: RE: Daughter diagnosed w/Juvenile Myocl
Submitted by missyphoebecolby on Sat, 2005-04-23 - 21:12
To Patricemit:
I just read your story about your daughter. Wow, its sure was enlightening to hear that I'm not alone. My daugther was diagnosed with JME 3 years ago and went throught the same things ie. the friend situation. She has only one friend who calls her to do anything with and also a very nice boyfriend. She also struggles in school with academics as well. Prior to this curse she's been dealt with she was involved in soccer, swimming, band, chorus and a high honor student. Since JME, she has almost drowned when taking her Life Guard test (which needless to say, she didn't pass) and numerous other life threatening situations. Her grades have gone down tremendously and she has 2 tutorers come to the house. She also has an abbreviated school schedule in order to sleep and get rest. She gets so depressed at times, as she hears of SO CALLED friends going places and doing things and never gets invited. I wonder how they would feel if this were them. I also am so resentful towards these girls.
What interested me most in your letter was the fact that your daughter has been able to move onto college. It gives me hope for my daughter. Most of her life she has wanted to study Marine Biology but her dreams have come to an end in that field. However, recently she has found a new interest in photography and plans on attending a 2 year college. The college is several hours away from our home and I wonder how she'll do on her own as she requires a lot of care from me at times. I am encouraging to go to college but am very worried about who will take care of her if something happens. I guess we'll just do as we have been doing for the past 3 years and wing it. We too take things one day at a time.
In my wildest dreams, I never thought our lives would turn out like this. Some days are so chaotic! It sure is nice to know that I'm not alone and I hope to hear from you again some day. Please let me know how your daughter is doing and maybe she can get in tough with mine some day.
To Patricemit:
I just read your story about your daughter. Wow, its sure was enlightening to hear that I'm not alone. My daugther was diagnosed with JME 3 years ago and went throught the same things ie. the friend situation. She has only one friend who calls her to do anything with and also a very nice boyfriend. She also struggles in school with academics as well. Prior to this curse she's been dealt with she was involved in soccer, swimming, band, chorus and a high honor student. Since JME, she has almost drowned when taking her Life Guard test (which needless to say, she didn't pass) and numerous other life threatening situations. Her grades have gone down tremendously and she has 2 tutorers come to the house. She also has an abbreviated school schedule in order to sleep and get rest. She gets so depressed at times, as she hears of SO CALLED friends going places and doing things and never gets invited. I wonder how they would feel if this were them. I also am so resentful towards these girls.
What interested me most in your letter was the fact that your daughter has been able to move onto college. It gives me hope for my daughter. Most of her life she has wanted to study Marine Biology but her dreams have come to an end in that field. However, recently she has found a new interest in photography and plans on attending a 2 year college. The college is several hours away from our home and I wonder how she'll do on her own as she requires a lot of care from me at times. I am encouraging to go to college but am very worried about who will take care of her if something happens. I guess we'll just do as we have been doing for the past 3 years and wing it. We too take things one day at a time.
In my wildest dreams, I never thought our lives would turn out like this. Some days are so chaotic! It sure is nice to know that I'm not alone and I hope to hear from you again some day. Please let me know how your daughter is doing and maybe she can get in tough with mine some day.