New here

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

S

scmom2five

New
Messages
4
Reaction score
0
Points
0
Hello everyone...
I'm Dana, mom to four beautiful girls and one sweet little boy. We live in SC. My two youngest daughters both have Epilepsy. I also had 'e' as a child but luckily outgrew my seizure episodes.

My oldest daughter with Epilepsy just turned 6 in February. She was diagnosed at 3 mths of age. She was on phenobarbitol for the 1st year of her life and then placed on Lamictal until age 4. She was taken off of all meds at age 4 and has been doing great ever since. She does have some mild staring trances occasionally and sometimes has migraines about once every two months. Her last petite mal seizure was at christmas 2007 after being kept out for ours past her routine schedule while looking at christmas lights. We are thankful her trails with this disorder seem to have ended.

My baby daughter just turned a year on April 11th. She was diagnosed with familial childhood epilepsy at 4 mths of age. She was placed on Keppra for two weeks and it seemed to be working great for her when all of a sudden it completely stopped. She had nine grand mal seizures in one day between the hours of 6:45am and 7:30pm, with multiple petit mal episodes in between. We were so scared she would leave us that day. But she is now 1 year old and doing great considering. Her last seizure was 2 weeks ago. She was toddling around with her sister and fell and hit her head accidently. We aren't sure if the fall caused her seizure or the seizure caused her fall but we are thinking it was the later of the two. During this seizure she completely stopped breathing, something her sister has never done. She was unresponsive for around 3 minutes afterwards. I was pressing my finger into her side to get a jerk or movement and received nothing and also tried it on her feet with the same result. We called 911 and had her taken to the ER to be checked and luckily she was fine. We are so thankful.

Our other children do not suffer from Epilepsy, just our youngest two.

Well that is just a little about us... please feel free to ask questions if you have any! I look forward to getting to know everyone on here! Have a wonderful day!
 
Hi scmom! Welcome to CWE. :) You'll find that there are alot of parents here, as well as people with E. :) I'm sorry to hear about your 2 little girls. You might want to check out the library at this site. There's some great info there. As for the daughter that has staring episodes...you do know that absence seizures look like staring off into space right? You might want to mention it to her doc. Feel free to ask questions, chime in, or just vent when needed. :)
 
skillefer- u did read that I have been dealing with this for 6 years with my daughter and also had Epilepsy myself right? just making sure. I have read all the information about this disorder for both my own Epilepsy and that of both my daughters and I'm really just here for the support, not the info as I get that off the Epilepsy foundations website and also from my daughters' doctor. Yes I do know they are still seizures and I also KNOW that her doctor says she is perfectly fine and to keep doing what we have been doing with her. And I can personally tell you I know EXACTLY what those staring trances feel like as I have had them myself. Thanks so much for your concern though. Have a great day!
 
Welcome!

Wow, two children with E. It sounds like you have quite a handle on the situation and I commend you! I know when I was young I was a handful for my parents, but that was a long time ago.

We're here for anything you need anything and excited to have you on CWE. :)

-GLK
 
Welcome

Good to have you here at CWE. I honestly think you're lucky to have had e yourself because you'd have a much better understanding what your children are going through. Like Skilly said we've got a few parents here but I can't think of any any parents who've had E themselves offhand (I could be wrong). I"m sure you'd have a lot to contribute for this reason as well, especially to the other parents.

Meanwhile make yourself at home, check out the nooks & crannies of the site and see what we got.

Eric
 
Hello and welcome * You have found a great place for support and information. I wish you well
joan*
 
Thanks for all the welcomes. I'm not sure I'd call myself lucky but yes I do understand what my daughters are going through. Our family has a rare familial inheratence that I pray ends with my girls. I did have to relearn everything from the "mother's" viewpoint instead of the "patients" though. And I want to apologize for being snippy yesterday... I'm normally not but I was extremely tired and dealing with a 1 year old who was showing signs of seizure activity all morning, praying for her not to have one. The prayers paid off because by the afternoon she was doing much better. Anyways, thanks again for all of the welcomes and I look forward to getting to know everyone. :)
 
Hi scmom - I am the youngest of five. Big families are nice.
My daughter began having seizures at the age of 14. She is 17 now and I see an improvement in the # of episodes. Really darned proud of myself as we are doing this med free at the moment. Not an easy task, but learning as we go.
I am sure I will be learning a lot from you.
 
You must log in or register to reply here.
Back
Top Bottom