Friday, May 29, 2009

Forgive me, I know not what I do!

Ohhhhh no. First off I am not someone who wants to be in any kind of spot light. I would rather hold the camera than be in front of the camera. But here's what I've set in motion...
I was watching the news a while ago and they asked if anyone had any ideas for a news show to email them. I had just that day talked to more than one person about Naomi's diet and of course no one knew anything about it or how it worked. So I emailed the news station and told them a little about the Ketogenic Diet.
The health anchor emailed me back and said she was very interested in doing a story about it. She would get in touch with the Clinic and see if they would like any publicity about their Ketogenic program.
A few weeks, maybe months have gone by. Then yesterday I got an email from the Clinic. The news station contacted the media relations department and they'd talked to our doctor and she's on board with doing a story about the diet and thinks Naomi would be a great story.
So I emailed them back saying that's fine just let me know what we need to do. Then I freaked, called a friend and my mom and said "how do I loose 50 pounds fast?".
If it wasn't for Naomi and the fact that the diet has helped her there is no way I'd get on TV with her! I'm fine with her being on TV. She's cute! But it is not exactly on my bucket list!
I was actually hoping they'd find someone who it had been miraculous for and interview them. Though the flip side to that is that this will show the diet can help but it's not always instant and it's not a guarantee cure.
I hope this helps someone. That maybe someone who has had their kid on multiple medications will see this and see it as another option. An option that at least will give them their child back.
We are still on 300 mg twice a day of Keppra. I think I'll wean her down to 200 mg in the morning. But today I heard her call the dog "bear" a word she used to say over and over. I also heard "ball". She sits and looks at us directly in the eyes and smiles this sweet little smile. She also is more aware of what she wants and is jiggling door knobs and getting mad about wanting something and she can't express what it is. Yesterday she had no cluster and only 10 seizures all day long. All but about 3 of those were when she was getting up or I picked her up and she just got this look on her face like she'd gotten dizzy. She started on higher calorie meals yesterday and this morning her urine ketones were only trace. I'm not sure if it's the higher calories or possible teething. I need more than a day to figure that out. If it is teeth. she's still having a pretty good time of it. There was a time when if her teeth were coming in she could have near 100 myoclonics in a day and maybe 80 of them would be in 1 cluster. Today she's had no cluster but is having a few more than she's had other days over the past week.
The clinical nurse called today and I asked him if I was going to see a problem with withdrawal would that have already happened? He said , absolutely. That made me feel much better going ahead and dropping a dose in 1 week as opposed to 2. We've seen nothing but improvement so why wait!

2 comments:

Lisa Christine said...

Oh, how I wish the diet had worked for us. But at least I know that we gave it a good try :)

I think that's wonderful that you are going to be starring in a news segment!

You'll have to record it and find a way to put it on your blog!!

Fawn said...

That's wonderful, Jenny! I know you're not exactly excited about it, but it's such a great thing -- I think the more people who know about it, the better. I wish the diet were so well known that I wouldn't have to explain to people that they can't give food to Jade. It's not that I mind explaining, but I get stressed about people not understanding and then having slip-ups happen.

When Michael got interviewed about his Best Job in the World application, he mentioned the diet in passing. A woman from Vancouver phoned us at home to ask about it! So I can imagine how amazing it might be for someone to find out about the diet when the news will actually spend a little bit of time talking about it directly.

Hurray on the Keppra wean! Good luck with your sleuthing!