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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: Re: Sometimes I feel drained, Do you?
Submitted by raivensmom on Sun, 2006-01-08 - 11:00
For God hath not given us the spirit of fear;but the power
and of love & of a sound mind.....
Thank you 4 your kind words of wisdom. It feels good to know that we aren't alone out here.
I have to admit that I did and still do feel a little lost out here but....I try 2 remain strong 4 my children.
Raiven's mom (Terri)
Re: Re: Re: Sometimes I feel drained, Do you?
Submitted by txrhb1 on Sun, 2006-01-08 - 22:11
Hi,
You will never be alone on this site - the people here care so much about each other, and can help you learn how to cope with this disorder. It's been a long road for me, learning how to deal with my daughter's seizures, and then mine.
I have had to learn patience, strong advocacy skills, and how to do some of my own reasearch. By being knowledgeable, I am empowered when talking to the doctors. If I don't feel comfortable with them, then I find another. Remember - they work for you.
I have also had to learn how to let go a little bit with Jessica, and let her learn her own limits, and lead as normal a life as possible. Even though she is 22, it is still very difficult to do. When she was younger, we would discuss every seizure, and talk about what some of the precipitators could be, and how to avoid them. i.e. being late on taking her meds, not getting enough sleep, spending too long on the computer, and sometimes, even studying too hard and too long. Encouraging her to look back and think about what could be triggering some of the seizures went quite a ways in relieving both of our minds. It's hard - trust me, VERY hard. But, as parents, we owe it to our children to teach them as much independence as is possible for their individual circumstances. That was, and still is, a very hard lesson for me. Each of my 7 children were different, and I had to learn to emphasize their strengths, and teach them how to cope with their "weaknesses".
My faith has gotten me through much of this, and it sounds like you have a lot of faith. you will remain in my thoughts and prayers.
((( hugs ))),
Barbie
***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo
Re: Sometimes I feel drained, Do you?
Submitted by txrhb1 on Wed, 2005-12-28 - 20:57
Hi, First off, welcome to the forum, and know that you are never alone. Both my daughter and I have seizures, and yes, it is a scarey world. Jessica has had seizures since she was 9 years old. It is much scarier for me to watch her have seizures than to have them myself. Although Jessica's seizures are not completely under control, she has grown into a wonderful young woman. Through the years, we have tried many different medications, with different results. So far, the combination she is on now has controlled her seizures better than others. She is currently on Trileptal and Topamax. She has generalized seizures, and the doctors do not believe she is a surgical candidate. We will be doing more testing this summer. I have right temporal lobe epilepsy, and may be a surgical candidate. Right now, indications are that I also have a lesion on the left side, so surgery is questionable. I did have the VNS implant done in October, and we are hoping to see some positive results from it. It is still too soon, but I will remain optimistic. I am glad you have found this forum. The folks on here are absolutely wonderful, and offer lots of helpful information, support and encouragement. You will never be alone here. Best wishes, Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo