New to Chat Forum

Submitted by NatalieB on Tue, 11/18/2008 - 09:15.
in

Hi,

my name is Natalie, and my son Stephen has epilepsy. He has been on Epilim, Rivotril and Lamictin. He is currently on Topamax, which we are weaning because he is also on MAD (Modified Atkins Diet).

Stephen is nearly 9 yrs old, and has a brain injury, which I believe was caused by his pertussis vaccine at 6 weeks. He has global developmental delays, and is non-verbal. He has tonic-clonic seizures after he goes to sleep at night.

We have been on MAD since the end of Feb 2008, and the seizure intensity has decreased but the number and duration of the seizures did not drop until the end of Sept (ie after 7 months on MAD). We are currently at about 15 minutes of tonic-clonic seizures per week.

I am glad to find this forum.
Regards,
Natalie


‹ My Name Is Diane. I Am The Mom Of An Adult Son With Epilepsy 2 year old diagnosed with Lennox Gastaut ›
Amber Kane's picture

Hi Natalie

Submitted by Amber Kane on Thu, 11/20/2008 - 15:31.

Hello Natalie, I'm glad you found this forum too. I learn a lot here. There's such a big difference when support and discussion is between parents who understand.

I have two children with developmental disabilities (out of three) and even though I don't deal with epilepsy to the degree most mom's here do, I find the forum and Catherine's articles to be quite helpful.

Enjoy browsing around; there is a lot of information here, including the podcasts and everyone is really helpful, so don't hesitate to post again. Take Care - I wish you well. Amber Kane

Hi Amber

Submitted by NatalieB on Thu, 11/20/2008 - 15:49.

Hi Amber, Thank you for the message. I count myself very lucky in having a very bright, caring 11 yo daughter who helps me so much. I look forward to browsing. Thanks again, Natalie

Arlene Martell's picture

Welcome Natalie

Submitted by Arlene Martell on Sat, 11/22/2008 - 02:31.

Thanks so much for posting your story and telling us about Stephen. This is the first post where I have seen a young child on the modified atkins. Did you try the full ketogenic diet? I am wondering if you tried it and had issues or just wanted to try something a little less restrictive? In any case, it sounds like it is helping so thats great news.

It is sad to hear that your son had problems after his vaccination. My son also had problems after his and developed aspergers syndrome.  There is so much to learn as parents and I like the idea that we can read other peoples stories and hear what worked for them.

I do encourage you to listen to some podcasts and do a search on the site for topics you are interested in.

Thanks again!

Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com