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Sometimes I feel drained, Do you?

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?

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

Re: Re: Sometimes I feel drained, Do you?

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?

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: Re: Re: Re: Sometimes I feel drained, Do you?

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!

Re: Sometimes I feel drained, Do you?

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?

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: Sometimes I feel drained, Do you?

I can only imagine how you must feel. I just was told my 15 year old is epileptic because thats what they label anyone with 2 or more seizures. I feel like I've been holding my breath for the last week, the 26th Tee had a grand mal seizure 1 week after they said he had absence seizures, plus he's on anti seizure med? It was seriously the worst thing I'd ever seen. I know now that I just have to deal with it, stay calm, keep him safe. We've been to the er twice now, they really don't seem to do much. I than spend all day trying to keep my kid awake, he was so tired today that his eyes were rolling in his head. Scared me to death. I also feel very alone, the doctors say keep him awake and make sure he sleeps only at night, he's never had good sleep patterns and now the bad sleep depravation can cause a seizure. He's a 15 almost 16 and he's rebelling against me already and now with this, making sure he wakes up, takes a pill, than stays awake and than a 3pm pill and than another at 11 pm. I work and have been off the last 2 weeks and I am afraid to leave him.
I have to send him to school on Monday and I am worried too :-}
How do we deal with the anxiety? I wish I knew. My husband says he has to take care of it, the pills, the sleep the responsibility..ahhhh
talk to me anytime, I'll understand!
keep safe my dear...deep breathes ok?
Lilian

Re: Sometimes I feel drained, Do you?

Hi,
First off I can totally relate to how you feel.My daughter has cerebral palsey and was Dx in oct with epilepsy. It has been a total up hill jorney sense day one. Ther are days that I dont know where i am going to find the patiance and strenghth to keep it all toghether. I keep going because like you I am my childs voice and with a parent that is hands on they can accomplish wonders. I have found alot of friends laughter and a sense of peace here at this site there are so many wonderful souls here and I have found no matter what the thing is that we are dealing with that somehow it all clears its self out with the support here. You are not alone there are so many of us out here dealing with not only the stress of every day life but we have had some added suprises thrown in to boot. If we can take the time to reach out you will find that there is always a hand there to help you .All the best to you.
Always Pam

Re: Sometimes I feel drained, Do you?

HI I,m new to this site and I read your letter and it hits so close to home. My daughter was 11 weeks when she had her 1st seizure. We have tried so many meds,we are currently weing off the ketogenic diet .Her Doctors say she,s not a candinate for surgery. I worry every day about the future. This week we are starting her transition to school,I am so scared she is only 2&1/2 she is now able to walk but she does not talk and only knows a few signs. I guess what I,m trying to say is your not alone!I would love to chat with you more! Hang in there, and just try to enjoy your Angel one day at a time.

sorry posted twice

sorry posted twice

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