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RorysMommy

3 year old with seizures: Mommy's scared

My three year old daughter has Complex Partial seziures. Her Neuro at CHOP put her on Trileptal just about a month ago. Her seizures are under control now, but I am always fearing the worst. I don't sleep well at night (I recently bought a monitor for her room, and I can't hear her on it!) I check on her constantly and it's starting to affect my husband and I (you see, she is not his biological daughter) I'm so afraid that she'll have a seizure and I'll sleep through it, or I'll be watching a movie and won't hear her. What do I do? How do I go about living my life so that I can make hers better??

Comments

Hi.. I've had complex and

Hi..

I've had complex and simple partials since I was three years old.. (= 49years) so please, please, relax.
You aren't doing your daughter any favours by freaking out and that behaviour can generally be allievated via education & understanding.

I would advise you to go to epilepsy.com and do some research.
(The place is run by physicians so the information there is accurate)

Here are some pages...

Symptoms of a seizure
http://www.epilepsy.com/101/ep101_symptom.html

What causes epilepsy
http://www.epilepsy.com/101/ep101_cause.html

Complex Partial seizures
http://www.epilepsy.com/epilepsy/seizure_complexpartial.html

I promise you, the different or indicative behaviour you see when your child has a complex partial, are not signs of hurt or pain.
Unless the 'after' situation enables the epileptic to 'conclude' others are reacting to seeing a seizure, no direct memory/knowledge of the event even exists for the patient.
(Like those nighly dreams which we commonly lose memory of immediately upon awakeining).

Please don't worry.
All my parents worrying did for me was make me feel flawed.
We all have something.. some are diabetic, some have no limbs, some have enornmous allergies... so please don't worry.
Your daughter is now controlled.
I'm happy for you both.

~sol

Re: 3 year old with seizures: Mommy's scared

Hi...I completely understand how you feel. I found my 6yr old daughter seizing in bed. I had no idea how long she had been seizing and I lost it! I swore I would never sleep again and I would sleep with her in her room or I would get a video monitor in her room so I could constantly watch her.....and then I took a breath. The funny thing is, as much as I beat myself up and as much as I felt I had failed her as a parent, afterwards she was completely ok. Just understand, you can't be with her or watch her every second of every day even though you may try...its impossible. I felt I had to share my experience, I hope it helped and didn't scare you further. Feel free to e-mail me if you would like to talk further vrawls@ci.dickinson.tx.us. You and your daughter will be in my prayers. All the best..

-V-

Re: 3 year old with seizures: Mommy's scared

I am sorry to hear about your daughter but please listen to Sol. I have had seizures since I was 18 mo old and I am 23 now and I thank God that my parents didn't constantly hover over me. I know that you are very concerned and keep that monitor but don't let your relationship with your husband disolve let it grow stronger. This is the time when you are going to need each other the most. Keep a positive attitude and don't worry about how your going to live your life to make hers better just let her be a kid. Make sure she gets the best medical care so that she can hopefully be seizure free one day but don't let this consume your every waking thought. I have heard my mom talk about exactly what you are saying now but she stepped back, exept when I had a seizure of course, and I have grown up fine. Reiterate that she can do anything she wants and that epilepsy isn't a disablity it is a little set back to learn from and grow.
Heather

"I can be changed by what happens to me. But I refuse to be reduced by it." Maya Angelou

Re: 3 year old with seizures: Mommy's scared

I am a father of a four year old with various seizures and I have felt exactly the same way as you described thinking the same thoughts. Unfortunately, I did allow it to get between my ex-wife and me. I was so consumed with my daughter and making sure she took all of her medicine on time and watching every move in case she seized again.

I think everyone's advice is excellent. I regret becoming so consumed by it although I am glad I read as much as I did and talked to doctors as much as I did because I think over the past two years I have calmed down a bit as a result of the education.

Anyway, you are not alone. Even though I still worry, it has been better and as the others mentioned, your daughter will be able to live a normal life and it doesn't help to worry so much. But that is so much easier said than done. I understand that completely.

Re: 3 year old with seizures: Mommy's scared

I completely understand your instinct to protect your daughter.I'm going through the same thing with my son. And my parents did the same thing with me and my epilepsy. I did my absolute best to prove to them there was nothing wrong with me - I refused to take my meds, lived like regular teenager, all that stuff and I lived through it. My mom is still a mess @ 60. She STILL can't handle it when I have a seizure even though it's only once a year, if that. I'm compliant with my meds, live a healthy life...all the stuff you're supposed to do - sometimes seizures just happen. But I wouldn't have changed a thing. And I will make sure my son who was just diagnosed with E as well doesn't miss out on a thing. He will ride his bike (with a helmet). He will swim and I will watch. He will play baseball and I will cheer the loudest. Let your daughter be a kid. She only gets one shot at that. She'll learn alot about how to handle her life from you, so don't freak out! Learn all you can and don't stop until you are the authority (Remember how most people cram the info in the pregnancy books in so you deliver a healthy baby?) When you go into see her Dr. next time - have ?'s ready and get good answers. You'll feel better.
If you feel like I can help with anything please feel free to contact me:)
Melissa

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