Parent of a child with epilepsy

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!

J

jenab

New
Messages
4
Reaction score
0
Points
0
My son who just turned 19 had a grand mal seizure a week ago. Back in 2007 I witnessed his arm flail out uncontrollably and took him to see the docs. We were told to just report if it ever happened again. I immediately thought it was some form of seizure myself but the docs thought maybe he was just tired from our long road trip. At any rate, he was supposed to report any episodes like this. Unfortunately I found out on July 17 2011 he had had experienced 3 to 4 instances of this and had shrugged it off and muscle spasms although he did say he looked up this phenomenon and it told him possible seizure. Well I was awakend at 3:30 with my daughter saying Michael had fallen and was shaking. I expected to turn the corner from stairway and find him just in pain. Instead he was face down rigid and I knew exactly what was going on. I don't think I have ever been so afraid for him in my life. I am in the medical field so I did all the things I needed to as far as protecting him, turning him to his side and keeping track of the time as well as his breathing pattern. EMT came and shot him up with Narcan!! I had so hoped he would not have another one. 5 days later,,,grand mal seizure I was at work. this time my daughter called EMT I met them at the hospital. He now on Keppra until Monday neurology appt. I am so scared I can't sleep. I want him in my view all the time. I even had him sleep in my room so I could just watch him. I hate this for him. He's just gaining his independence and now this. It just hurts me to see him go through this although he said he does not remember it. I just wish I could get the sight out of my mind. How do you get past it? Hard...
Treatments
 
Welcome to CWE ! Im sorry you and your son are going through this , as far as the seizures themselves i've always thought they were harder 1st on my parents , now my husband than they are for me , it's scary when something like that happens to someone you love and theres nothing you can do to stop it .... but it's great that you had the know how to help him when it happened , the best thing my husband has done to help him deal with it is to get educated , and i think ( even though i hope this isnt the case for you ) the more he's witnessed he's learned what to expect and knows i'll be okay w/some time ....., just stay positive and learn everything you can ... good luck to you and your son
 
With you being in the medical field and as a concerned mom as you are it sounds like he's in the right family. I'm not a parent of a child with epilepsy but I have 2 young children and when they hurt I hurt. I don't know if you are religious or believe in God but there is a song by a guy named Mark Shultz and it's called "He's My Son." It's about a father praying for his son.
 
That exactly right..their pain is your pain. Right now he is sitting with his best friend and texting me to ask what time does he have to take his next dose of medication. I am wishing he were here seated right next to me so I can watch him. Believe me when I say God is probably saying "why don't she take a nap and stop buggin me all day and night." Yes I do have a religious foundation and I am having him work overtime...lol Thanks for the response
 
lovemyladybug said:
Welcome to CWE ! Im sorry you and your son are going through this , as far as the seizures themselves i've always thought they were harder 1st on my parents , now my husband than they are for me , it's scary when something like that happens to someone you love and theres nothing you can do to stop it .... but it's great that you had the know how to help him when it happened , the best thing my husband has done to help him deal with it is to get educated , and i think ( even though i hope this isnt the case for you ) the more he's witnessed he's learned what to expect and knows i'll be okay w/some time ....., just stay positive and learn everything you can ... good luck to you and your son
Click to expand...

Thanks so much. My son says if I print one more info sheet for him he's taking the printer. I do appreciate your response. Sometimes knowledge is a double edged sword. I just feel like I need to know everything and I am so anxious to see the neurologist on Monday. Will share what info I get there with the forum. Thanks so much
 
I'm glad God never tires and has His own emergency hotline.:lol: Also, I have a watch that has three alarms on it. It's the Timex brand. I don't know if that might be something to check into.
 
The watch is something I did not think of. I guess because I am doing it for him right now. I will have to allow him at some point to be responsible as well. That's a great idea and I thank you.
 
I am new to this site. I have 17 year old twins both diagnosed with epilepsy. One in 2010 and one just within the last month. The first one to have been diagnosed is really struggling with controlling his seizures. He had one this morning as he was about to write an exam, and last week he had a grand mal one at a restaurant.
To say we are stressed, well that is to say the least. I read another post of the mother who talked about not sleeping at night, wanting to sleep in 19 year old son's room as she is so afraid, I can so relate to these things. Every noise I hear I wonder if it is one of them having a seizure. I don't think anyone realizes how difficult it is for a parent unless you have experienced it.
My son is on his fourth medication since 2010 and his seizures are more frequent, not less. So concerned about him being one of the percentage who are drug resistant.
Have been off work for the last month, due to stress and both kids needing me and now due to go back and just don't know how I can when they need me with his seizures being so uncontrolled.
How have other mother's got beyond these points?
 
You must log in or register to reply here.
Back
Top Bottom