Alone & Afraid on this rollercoaster called seizures

[journey1966]

My name is Kay and I have a daughter that is almost 14 6 months ago she "fainted" while at church with a friend then last week she had a seizure and her friend was there and told of that is what she did when she "fainted" only this time the shaking was worse which she never had said anything about the shaking when it happened So we went to the ER who sent us to the Neurologist they have done Blood work, a EKG,and CT scan The Dr said it sounds like Clonic Tonic Seizures that she was probably born with it and it shows up between 8-15 normally. He is doing a EEG, and MRI to rule out other causes to be on the safe side but he isn't expecting to find any. And then we are back to a seizure disorder that he said there really isn't a cut and dry test for and he would put her on meds to try and prevent more. So thats where we are on this new scary rollercoaster ride. I feel so helpless not knowing and want to find out more about it we feel so alone so I found this website online and thought maybe we could find some answers, opinions, support and maybe some new friends that know somewhat what we are going through. Thanks Kay & Krissi

[AurorasMommy]

Hello,

Welcome to the board! I have found it very helpful, and the people here are very nice.

I think no matter what age your child is, the diagnosis of Epilepsy is scarey at first! My daughter is 2 1/2 and has Complex Partial Seizures, that turn into Tonic Clonic! She has been seizure free for 6 weeks, and is on Keppra 1.75ML twice a day.

After watching my last daughters seizure which turned STATUS and permitted her a trip to the ER to get meds to stop the seizure... it has taken me 6 weeks to even feel SORT of better! I have been on edge, and STILL constantly am watching her throughout the night to make sure she is breathing or not having a seizure! I am even contemplating getting a monitor, just so I feel a little bit better! I am so scared that I will sleep so heavy (I have a new 8 week old baby) that I wont wake up to hear her have a seizure, and it will go into STATUS and I might lose her!

So as you can see, I too am still dealing with this roller coaster ride!

It is good that they are doing an MRI, my daughter has a scar on her brain from a stroke she had at 3 months old. She isnt delayed in any way, and is actually advanced for her age.

She doesnt have any other health issues either.

I hope you can find some relief from talking to people here, I know I have!

Megan & Aurora

[CJR]

I'm so sorry that you are going through such a difficult time. My 10 year old had her first tonic clonic 1 month ago and we had a V-EEG two weeks ago that confirmed the Epilepsy Diagnosis. It is terribly scary and very much a rollercoaster ride. I think the scariest part is not knowing what to expect next, don't you think?

Please know that everyone here understands what you're going through. I've found everyone to be very friendly and helpful. I also find that journaling really helps me so I've started a blog (seizethedayachildsway.blogspot) where I can keep all of her symptoms and appointments. I even have a calendar to record all her partial seizures. And more importantly we have a place to record our feelings. My daughter will occasionally jump on at the end of a post and put her feelings down. Communication is key and sometimes at this age it's easier to tell a computer then it is to tell Mom.

Good luck to you and your daughter.

[Bernard]

Hi Kay, welcome to the forum.

Krissi's story sounds so familiar. You are not alone.

Here are a couple of good threads to start your journey:

Epilepsy 101 - Part FAQ, Part tips and advice

Proactive Prescription for Epilepsy

[BuckeyeFan]

I am touched by how many parents I have met here trying to find out everything they can to help their children. A standing ovation for all of you.

Your use of the word Rollercoaster is very fitting. I have had E for 26+ years (starting at age 20). Though I consider my wife to be my hero, the support from others who have E was something she could not provide. The effects of E and the meds are so hard to put into words. I have found both education and comfort with this new home. I hope you find what you are looking for as well.

Your daughter may enjoy hanging out in the Loft. It is a safe place for teens where she might find some great peer support.

[RobinN]

Hi Kay... another mom here.
Rebecca had her first seizure 6/23/06 at the age of 14. I remember the day clearly.
I did not witness the first one so I thought she was just coming down with the flu. The second one that day I did, and it has been a rollercoaster ride ever since.

I have found a wealth of information here, and shared some of my own. I hope you find as much comfort here as I have. We will do our best to guide you in the right direction if you should have any questions.

[journey1966]

Thank you soo much for your well wishes it helps so much just to know we are not alone in this. Other than the worries I have for my daughter the worst thing has been not knowing and not being able to talk to anyone who has been there. I'm so thrilled that you guys are so caring and can't wait for my daughter to reach out here instead of just reading posts here. She is a very gifted factually young lady but feels a little thrown in life right now Her comment was I feel like I have entered the Twilight Zone. But Thank you so much for your comments and experiences it has been the best thing that has happened since this started! God Bless you all, Kay & Kristin

[CJR]

By daughter is a huge comics fan and she said she felt like she had stepped into Bizzaro World. Give yourselves some time to let yourselves adjust. The first step is always the hardest...

[BuckeyeFan]

I fully understand the twilight zone description. It may be very hard for her to communicate her symptoms to you as so many of them are hard to put into words. Her use of the twilight zone is pretty good.

Hugs to both of you. We do a lot of leaning on each other here.

[skillefer]

Hi Kay! My mom was in your position once. I have Tonic Clonic seizures. And I understand that it can feel like a crazy rollercoaster ride for parents. The thing is...when your a teenager, and you have these seizures, all you really want is to be normal....and to be treated normal. Just remember that how you react to her seizures will effect how she feels. I used to feel so guilty about having seizures. I know...it sounds silly...especially considering it wasn't like I could stop them from happening....but I hated how worried my mom got. My dad dealt with it by smiling. He was really laid back and calm. And that helped BIG time.... The thing to remember is that this is not a death sentence....it is NOT the end of the world. I'm in my 30's, drive, am married, and have an advanced degree. So this does NOT have to end your dreams. So stay strong, and feel free to ask questions.

[Star*gazer]

Kay, I hope everything gets better for you and that they figure out everything for you daughter! My prayers are with you

[kezza2607]

Regards to you and your difficult time as I know when i started my seizures when i was 7 it was a difficult time for my parents.

But you are her mother and you will know the words or the comforts to support her. She just needs to feel that she is perfect in every way and that its others that have the problem if they cant understand etc.

She is in a difficult part of her life and yours as her transition takes place both at school and into adult hood etc. So just support her and be there. You cant do more.

Just ask questions and plenty of them. No doctor can blame you for helping your daughter grow to understand.

My wishes are with you.