New Here!

[Ethan's Mom]

Hi all!
I am excited to be here. My name is Diana and I am the proud mother of my 8 year old son Ethan. Ethan was diagnosed about 4 years ago with epilepsy. He has the Grand Mal seizures. We had a little trouble controlling them at first. All his seizures happen between 5 am and 7 am. So I had to either have a motion camera on his with an alarm to go off with every movement or he slept with me. The docs think his seizures have to do with coming out of REM sleep. We got them under control. He had two break through seizures about 2 years ago, but other than that seizure free. He does have developmental issues and was recently diagnosed with "ADHD without hyperactivity" So now we are on 10mg of Foculin (sorry about spelling). He is taking 300mg of Zonegran for the seizures. I am worried about mixing these drugs. Not to mention his blood pressure was 120 over 77 and the max for an 8 year old child to still be in the normal range is 120 over 78. I bought him a blood pressure machine to monitor his bp. I am looking forward to meeting every one!
Just an FYI we are from Katy, TX (West Houston)

 

[epileric]

Welcome Diana

It's always good to have more input. There's a lot of parents here with kids who have similar problems to your Ethan. We've even got another Ethan here.

You seem pretty aware of when Ethan has his seizures, do you mark them down on a calendar or diary? What a lot of people do is track their (or their childs) seizures as well as when and how well they sleep, when/what they eat, move their bowels & how their overall mood is that day. Doing that can make it so easy to track what might trigger seizures. I found foods that effect my seizures 24 hours later that I never would have associated with my seizures otherwise.

Please make yourself at home, have a complimentary cup of coffe :cheers: and check out what we've got, especially in the nursery.

 

[Ethan's Mom]

I have not kept records of food intake, bowel and so on. But I will now.
As far as food intake my son went to the Feeding Disorder Clinic at Texas Childrens Hospital a year or so before he developed Epilespy. When his seizures started nobody had suggested that we keep track of his diet and the menu of food he would eat was so limited I could pretty much tell you at anytime what he had had. But of course as time goes by one doesn't remember those things years later. I will make notes of his diet now.
I am worried that we have introduced additional meds for his ADHD. It has been a month with the ADHD meds and no signs of seizures thank God. The worst thing in the world I have witnessed in person is watching my son have a Grand Mal seizure for the first time. Ew.
On a more positive note:
This forum is so great. I am strolling around and learning new things...what a great resource!

 

[Nakamova]

Hi Ethan's Mom, welcome!

I found that taking a magnesium supplement brought my blood pressure down almost instantaneously. Maybe Ethan could try this? (Of course, check with his doctor first).

For both ADHD and seizure control, you might want to look into neurofeedback.
http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova