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Sometimes I feel drained, Do you?
Wed, 12/28/2005 - 20:41Topic: Parents & Caregivers
I'm the mother of a child who has battled seizures since she was 10 months old. At first I didn't noticed the signs of a seizure oncoming. But as time moves on & the older she gets, it seems like her seizures have gotten worst. We have tried several different types of medications but none really helped her. She almost lost her life back in 1999 due to a bad reaction to one of the medications she was on.
My daughter cannot speak for herself but she does have a way of communicating with me when she wants something. "I am her voice" & I do speak loud.
But...there are times when I feel like there is no hope or chance that she will get better. The doctors say that she is not a match for surgery, yet we've tried a total of 7 different medications and NONE have helped. We tried the Ketogenic diet but that didn't work all to well with her body so we had to stop that. We've tried ACTH, amoug others yet nothing.
I wish I could erase it all together because I hate to see her have them, they scare me, they make me very nervous. I worry a lot..:(
I guess the reason why I'm posting this is because I feel alone out here. I get depressed thinking about it and I hurt on a daily basis. To put it plain and simple "I'm scared"
Comments
Re: Sometimes I feel drained, Do you?
Submitted by Mom2Chris on Thu, 2006-01-05 - 00:46
Wow, my first day on this wonderful site and I found someone who feels exactly as I do. My wonderful 8 year old son was just diagnosed with Ep and I too am sooo scared. I worry all the time, that is when I'm not praying or crying. Chris has had 2 partial seizures and it breaks my heart that he now lives his life worried about having a seizure at school. This is not what an 8 year old should be worried about! Our ped nuerologist put him on Lamictal and when I'm not worried about him having a seizure, I'm worried about the awful side effects, and the whatifs...I've never in my life experienced anyone having a seizure, and to see it in my own child is too painful.
I hope and pray that you daughter gets better! This is all new to me, I admire your strength in dealing with this for so long...I'm hear to listen if you ever want to talk...
Re: Re: Sometimes I feel drained, Do you?
Submitted by raivensmom on Sun, 2006-01-08 - 10:58
For God hath not given us the spirit of fear;but the power
and of love & of a sound mind.....
Hello Mom2Chris,
Thank you for responding to my blog.
For awhile I thought I was alone out here, my daughter is still having problems with her seizures yet I continue to have hope & faith that she will at least over come just a little so she can enjoy life like a child should be able to.
I'm always worried for my daughter, it's like my mind is in over drive with worries. I hate to see her have them but I still try to remain hopeful.
We're going through some tough times right now on the homefront so right now we are kinda of homeless but thank god for the fact that I work at a hotel :) We're waiting on a bed at the shelter so that's more stress and worry added on top of what I already have to worry about when it comes my daughters health problems.
Thank you 4 your kind words
I wish nothing but the best for you and your son:)
Re: Re: Re: Re: Sometimes I feel drained, Do you?
Submitted by jboyd on Sun, 2006-01-08 - 22:34
Hi i want to say that your a very strong mother who really cares and really loves her kids i wish that some other moms out there whose in your shoes can really benifit from you help and encourage ment because i know their are alot out there who need help and support and and they can really benifit from some one like you. your not alone!