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.


    Tuesday, November 11, 2008

    Sign the Epilepsy Awareness Petition!

    As all of you know, our son Soren suffers from a debilitating form of Epilepsy. One of the tough things about Epilepsy is that people in the general public know so little about it. It is a disease that many either never think about or think is easily controlled by medication.

    Sadly, only 70% of those with Epilepsy have seizure control. That leaves 30% suffering from seizures and the after effects of those seizures. 30% searching for the right medication and dealing with the side effects of those meds.

    It is a disease with a terrible stigma. It is a disease that can be completely debilitating.

    We need to raise awareness of Epilepsy. It doesn’t get the press that many diseases do. But it’s time to change that. You can help. And all it will cost you is a little time. November is Epilepsy Awareness Month and The Epilepsy Foundation needs your help! All I’m asking is that you go to
  • Epilepsy Petition
  • and sign!

    The Epilepsy Foundation’s goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message!

    Collecting signatures is a great way to raise epilepsy awareness. The more we talk about Epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Sign and help make a difference!

    Sign for Soren!

    Thursday, November 06, 2008


    Recently Thursdays are a strangely contemplative for me. At least for about 10 minutes. On Thursdays I pick Soren up early from school to take him to Feeding Therapy. After we get home, we walk to school to pick up Moira. This is where I get contemplative.

    Soren turned 5 this year. The year of kindergarten. If Soren was a typical kid, he would be going to kindergarten at Moira's school. Lots of my fellow moms have daughters Soren's age that are now attending kindergarten in these classes. I've seen them grow up through the years, but never really compared them to Soren.

    But now when Soren and I go to pick up Moira, I see these lovely girls running about. I see that they look at Soren slightly confused. And I think of how it should have been. When Soren and I came to pick up Moira, those girls should have been delighted to see their friend Soren. I'm sure some of them would already have crushes on him because he's quite a handsome fellow. He might play with them happily. Or he might be shy, not wanting to hang around with the girls. Or he might have his own group of buddies to run around and be boyish with.

    So I get a little sad. I think of what could have--should have--been. Then Moira shows up, we head home, and I forget about it all. Mostly. Until the next Thursday.