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Need so much help with my daughter
Tue, 02/02/2010 - 20:43Topic: Living With Epilepsy - Youth
Hello I have a daughter that is 16! Myranda has been diagnosed with severe epilepsy since 07! She has taken a total of 5 different meds! she is currently max out on Topamax & Lyrica plus she had the VNS installed in sept 09! we still have not been able to control her seizures! She had 33 last year & 28 the year before! She also has 3 different types of seizures! I am having trouble with the inablity to control them! We are in constant batlle because we hold her back from several "teenage things"! We are strict, but we believe its for her own good since she has fallen and been hurt! Please help me we are so overwhelmed with the situation!
Comments
Re: Need so much help with my daughter
Submitted by GodivaGirl on Sun, 2010-06-13 - 22:49
Hi There,
To give you a different outlook from someone much older who has been a little where your daughter is. I am soon going to be 36, was diagnosed at age 5, got a bit of a break from meds and was put back on them at age 16. I have never come off them since. I have complex partial and absence seizures. In life the number has gone up and down. Sometimes I'll have 4 a week, sometimes 4 a month, sometimes I'll go 4 months with none. Right now, my average - 2 a month - so really 24 a year going by your numbers. When life was a nightmare awhile back probably 1 a week, if not more and well - so, who can count.
I grew up a sports kid - baseball, hockey, ringette, tennis. I graduated in advanced in high school. I went to university (sociology/criminology) & have a job in technology. Right now I live with my mom & dad, but it is for finance reasons, not medical. I lived on my own for about 10 years. Right now, it just makes sense to live at home, but as soon as it makes sense again I'll move out.
Seizures have never been a reason to hold me back in life.
Sure, I have to take it into consideration.
So will your daughter. She's going to have to educate people to make sure she doesn't get hurt. However, start to give her freedom. Otherwise, if you don't she may start to rebel against the lack of it and all of the sudden begin to hate life as she knows it.
I know I went through that.
Life only got better when I realized nothing was going to stand in my way.
It actually helps my seizure control to fight back & as people start to say "you can't" be stubborn and say ummmm...watch me, and just live life to the fullest, happy. Safe, but happy.
Let her get out & enjoy life.
Blending in with friends & not being stressed about "why am I different" may reduce some of the seizures.
She probably worries about that & the stress her difference has on you more than u know.
Try letting her just be a kid.
~GG
Re: Need so much help with my daughter
Submitted by catchison014 on Tue, 2010-06-08 - 13:31
There is a special diet called ketogenic it can be an alternative if meds are unsuccesful. I'm currently looking into this for my 7 month old son. more info on this read http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet hope this will help