>> Wednesday, August 15, 2012
Where to begin?
Oh yes, at the beginning.
A few months back, I got an excited call from Kris of the Epilepsy Association, she was excited because, even though Utah was NOT picked for the annual Dravet Conference, she had spoken with Dr. Dravet herself. The good Doctor agreed to visit Utah. And so she did.
Dr. Charlotte Dravet is a legend, no, not just a legend, a rockstar in the Epilepsy Community. To say we were excited she agreed to come, is the biggest understatement in the history of understatements. Even more unreal: I got to spend time with her.
And she is wonderful. She is bright, charming, humble, brilliant, compassionate, curious and a force of nature.
When she landed in Utah, after a direct flight from Paris, we found that Delta, had graciously lost her luggage. They found it, on the ground, in Paris. Auspicious beginning. They delivered it to her the next day, and it didn't phase her at all. She brushed it off as if it was a small fly. Most people I know would stroke out over it.
We thought she would want to rest, and she did, for about 2 hours and then they took her to Park City for the evening. Day 1. Complete.
The next day, Sunday, we took her to Temple Square to hear the Choir and take a tour. A special, insiders tour that Kris arranged. Before the performance, Spencer Kinard does a compulsory welcome to visiting dignitaries and various groups. When he welcomed Dr. Dravet, she gasped and grabbed my arm: Oh! That's me!
I had to giggle. This powerhouse of brilliance was giddy about her welcome. It set the tone for the trip. She was truly humbled that we made such a big deal out of her visit. The Choir, as always, gave a wonderful performance, a very moving and touching performance, and Dr. Dravet and I exchanged small talk every so often. Note to self: Learn more facts about some of the cooler things in Utah before the world class Doctor makes you feel like an idiot for not knowing that the Conference Center holds over 20,000 people. Never in my life, have I ever wished I could converse in French, until that moment. Still, her command of the language was excellent, even though she apologized often for not understanding, I always felt it was I who was missing something.
After the Performance, I went home to fetch Glenn and we picked up the rest of the gang and Dr. Dravet and headed west. To the Desert. Skirting the southern edge of the Great Salt Lake and onto the Bonneville Salt Flats.
I have never been to the Salt Flats, through, but never TO. Topping it off: There was a race that weekend. Glenn had a running commentary on how the lake and the surrounding mountains were made. Complete with nerdilcious Geology terms. Dr. Dravet enjoyed it. I believe, we all enjoyed it. Day 2 Complete
The next day we had our appointment. We were late, they were late, it was all good. We shared his history, she looked at his EEG and said:
He does not have Dravet Syndrome.
We agreed we knew this, and talked a little about his auto antibody. She smiled as we talked about it and went back to the EEG. She read it again and then said:
Have you tried Cortisone?
Glenn and I looked at each other and smiled. Glenn told her it was on the table. To which she replied:
It could be metabolic, or immunologic. Has he had his vaccines?
Yes, we said, he is current and he clusters after them. She said:
Ah, has he been tested for the antibodies against the vaccines?
LIGHTBULB! Well, no. No he has not. YET.
She explained: It would show if he has an immune problem.
We did the head slap and the: DOH! after we left the room (Then we flew into a long discussion about the implications of such an easy test. And I called and left a message with Bug's Immunologist).
She agreed that we are on the right path. That he would probably benefit from the steroids and immunoglobulin. Considering we didn't even mention that we were trying to get IVIG for him, this was validation in spades!
We left with renewed hope that those two things: Steroids and IVIG will help him. We left knowing that we are on the right track, and left knowing that one of the top minds has seen our boy and confirmed that he has hope.
Day 3 Complete.
We spent two more days with her, off and on. We toured the UofU research lab, had a lovely dinner and she gave a lecture to a roomful of Doctors, Parents and Research Assistants. She laughed with Glenn and I and we grew to understand that this woman is unique to this world. She graced us with her vibrance and her energy. It was a breathtaking experience, a truly wonderful time and I am VERY blessed to have had her attention for even a brief moment. And after a whirlwind visit, she is off to Minnesota. Amazing, just amazing.