Henry came with me today to volunteer for Family Day at the Epilepsy Summit. Not only was I surrounded by my peeps -- vastly superior to yesterday's clusterf*&k, but I had my incredibly handsome, sweet boy there to claim as mine. It was a fine day, filled with community and amazing stories and families connecting to one another. The Epilepsy Foundation of Greater Los Angeles and The Charlie Foundation are such wonderful organizations -- we are all so very grateful for what they do.
Hilton Head, 2008 The "She in There, She Know" photo
Here's yours truly:
If that doesn't show up, you can go Here to listen.
I have to tell you that it's probably best that I didn't get to engage in further discussion with the neurologist who was also on the call. With all due respect, I found her position -- well -- the usual. Ya'll know me. I'm still holding onto the hope that one of these neurologists is going to shed the gobbledy gook and kick up their heels in joy that something good has happened. I'm also a tad sad that the part where I talked about all of you extreme parents -- the real Tiger mothers and fathers -- was edited out. Basically, I noted that we're very, very tenacious and unafraid of obstacles -- that our lives dealing with the various systems of care have already been so burdensome that most of us, particularly the black-humored ones, sort of expect more bullshit and absurdity. Oh, I didn't use any profanity and no one was aware that I was standing on a surfboard dressed in a Mad Hatter Costume under which was a string bikini.
And here's the wonderful Jim Abrams' statement through his Charlie Foundation about Charlotte's Web:
For the record, here is The Charlie Foundation's position on marijuana derivatives for epilepsy treatment:
The Charlie Foundation was founded on the principle that the medical standard of care needs to be be a process of informed, joint decision making between a patient or caregiver, and his/her health care provider. We have the highest regard for the value and necessity of science. We have much less sympathy for the intervention of government in this process.
What's more, science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. Many don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government interference. That's where it appears we are with CBD today.
If we had waited for a randomized controlled study to be published on the efficacy the ketogenic diet, Charlie would have been seventeen years, rather than 20 months old before he started the diet, and I don't know that we would still have him today.
What's more, to paraphrase "first do no harm": "To pretend that multiple drug treatments for children with difficult to control epilepsy are science and then argue against CBD is the cruelest of double standards."
Jim Abrahams, The Charlie Foundation
Thank you, Jim and thank you Madeline Brand for airing our story!
