Tuesday, November 18, 2008

Epilepsy Brainstorm Summit

Last Saturday, I (Aaron) attended the Epilepsy Brainstorm Summit organized by the
  • Epilepsy Foundation of Greater Los Angeles
  • In spite of major technical issues and speakers having to sub for other speakers because of the fires, it was an excellent conference. I wanted to share some highlights with you:

    -MOST IMPORTANT! There was a detailed presentation warning about the dangers of switching between brand and generics AEDs. In a nutshell, the drug's effect on the patient will differ from brand to generic and from generic to generic depending on the individual manufacturer of the generic. Pay attention to exactly what your pharmacy gives you. Talk to your doctor. This could be the difference between seizure control and not. The Epilepsy Foundation actually has an official statement explaining how epilepsy reacts to drugs differently than other diseases. This form can be sent to insurances and pharmacies expressing the necessity to keep AEDs consistent or to have them JUST DISPENSE BRAND, NOT GENERIC!

    -School nurses can train unlicensed staff (teachers, aides, etc.) to administer Diastat. The California Dept. of Education has ruled this. So don't take guff during IEPs. They handed out paperwork to back this up.

    -As many folks know, seizures take a tremendous toll not only on the brain, but on the body as a whole, in particular the lungs and heart. Effects include irregular heartbeats and asphyxia. Doctors have known for awhile that Omega 3 is good for the heart. Now there is a study underway to look at Omega 3's effect on the hearts of people with epilepsy. Hopefully it will show that the Omega 3 strengthens the heart cells. Meanwhile Soren is going to be switched to Omega 3 eggs. It can't hurt and hopefully will help.

    -Get a special needs trust for your kid. Put your house in a trust to avoid probate. We have the name of a couple of lawyers who handle this.

    All four epilepsy centers in LA (UCLA, USC, Huntington, and CHLA) have various studies and projects underway. Some very bright minds are working on cures. Let's continue to hope.

    These are just a few tidbits from the day. I would encourage everyone to attend next year. It really is worth it.

    On the home front, Amy and are looking into new ways to bathe Soren. He is quite long and getting quite heavy so bending over the bathtub is getting harder. We are looking for a bathing system. (Cause we need more medical equipment in our house.) If anyone has any suggestions or experiences, good or bad, please tell us. We will keep you informed of our progress.


    1 comment:

    Sharon said...


    Epilepsy has gone from an obscure mental illness, to a serious illness recognized by state foundations. This remarkable awareness, is because of the great work organizations, such as yourself, has done. We here, at Disease.com, fully support the cause your organization stands for and we are dedicated to aiding in your mission statement. Disease.com is a website which features disease and infection preventions/treatments. If you could, please list us as a resource or host our social book mark button, it would be much appreciated. Lets dedicate our time to the welfare of the 3 million individuals with epilepsy.
    If you need more information please email me back with the subject line as your URL.

    Thank You,
    Sharon Vegoe