Hello, I'm new to these boards. - Epilepsy Message Board

At Wits End · 10-07-2005, 02:51 PM

Hello,

My name is Martin and my wifes name is Holly, she'll be the one that will be most active here. The reason being, I was active many years ago on an epilepsy board when a person I've grown close to had a child go into a status seizure that caused her to be severely disabled. I took it hard especially since her child had the same type of seizers as my son does. I left that board never to return, I just couldn't handle it anymore.
We've been to many Neros in 3 states and they are stumped as well.

I'm afraid that the pressure is tearing my family apart, financially as well as emotionally.

Anyway, I have an 12 year old son (Eric) that has autism as well as seizures.
My wife and I will be reading the posts in here so we don't ask the same questions that has been answered time and time again. My son seemed advanced for his age until he turned 2 or shortly after. That's when he lost his speech and isolated himself from the rest of us. Our 10 year old daughter (Melissa) is in perfect health... thank God!!!!

Anyway, I'm exhausted so I'll let my wife continue tomorrow. I'm glad I found the strength to join a message board again.

Thank you,
Martin

tkdmom96 · 10-07-2005, 06:03 PM

Welcome Martin...

This has been a great board for us over the 3 years I've been here. It lead to me researching a surgical option for our daughter's E, after 15 years of Complex Partial seizure activity. She had surgery (Left Temporal Lobectomy) in June 2004, after 1 1/2 years of testing and 3 board reviews. You can read about our journey by clicking on my name and the option "all of the posts by this person". You will have to go back a bit, but I was quite detailed with the entire process. We have met some wonderful people here and also had a mentor here, during our surgical process.

Please don't get discouraged if someone doesn't respond right away...we all have things going on in our daily lives that prevent us from being here at times, which I'm sure you can understand. I am here less frequently than I use to be. I chime in if I feel there is something I can add or provide info on.

We have 2 friends whose children have autism. One is 15 (boy) and has the type of autism most people associate with and the other is 14 (boy also) with Aspergers. (sp) I also have a cousin who is a special needs teacher and has worked with autistic children for 10 years. I understand your heartache.

Feel free to pop in and ask questions as you feel necessary...

All my best to you and your family...
Vicki

neurowreck · 10-07-2005, 06:45 PM

Welcome. I've got complex partial seizures, dysautonomia (which can go into seizures at times), diabetes, arthritis, and a few other things that don't cause too much trouble. I don't have kids, but have taken care of kids with seizures and seen the pain the families go through, and can't say I know how you feel, but I've seen what you go through- this is a good board- lots of information from people who have been in your shoes, and support from those of us who haven't, but know how seizures effect us. Glad you found this board !

kayakmom · 10-08-2005, 08:18 AM

Welcome! I am so sorry that you are finding few answers and are in such a rough place. There are people here who will understand that you can talk to.....I have two teens who have dealt with seizures. I used to work with several kids with Autism in my church, dear friends still.

It has to be so hard to deal with both autism and seizures. I know that neuros have written off things for my friend as behaviors and it turned out to be seizures.

Hang in there! Yes as Vickie said, sometimes it takes us a couple of days ro respond but we will!

Take care, G