Sunday, January 31, 2010

Max Irvine - A Keto Kid

Fox News ran a story today about Max Irvine. Kristine and Troy are Max's parents and they did a great job in the interview today. Check out their interview.

Way to go Kristine & Troy! Thank you for spreading the news about the Ketogenic Diet. It's great to see people that have made this work! My Mother-In-Law saw the clip and emailed me. I had been looking forward to seeing it since Kristine, Max's Mom, a fellow Yahoo Keto Group member, mentioned it was going to take place. Things like this have such an influence. It helps all of us by teaching everyone and anyone about Ketogenics. It educates people all around us to the difficulties we face in dealing with epilepsy. Most importantly it demonstrates the reality of Ketogenics as a viable solution for epilepsy.

Kristine - You are darling! Your glasses are awesome! Your smile fantastic. You came across very honest and well spoken. Troy was also well spoken and hilarious too! The camera kept zooming in on Max trying to pinch his Dad's nose. Troy kept a straight face while managing to contain Max. So funny!

What a joy it was to watch Max being silly and then pulling the cutest grumpy face. I hope other parents of epileptic kids felt the same way I did as they watched this clip. I remember days sitting, watching and trying to play with my child in his drugged up seizure days. It would have made my year to have Noah reach up and pinch my nose like Max did with his Daddy today. My guess is that Max's parents cherish every sweet interaction because, like our son, there were years in which we never thought that might ever be possible.

The portion of the interview that cracked me up the most was.............when the reporter closes by saying how Max did a great job and how rough it is on a 4 yr old to sit through an interview. Then the reporter says - "GO GET THAT KID A TREAT!"
Dang! That was hilarious! I started laughing out loud! An entire interview on Ketogenics, and the reporter, trying to be super nice, suggests getting Max a treat. So funny! Keto Kids and treats are really words that don't go hand in hand. But, good on the reporter for trying and for doing the story. It was great!

Monday, January 18, 2010

My Child's Prayer

January marks 3 years for Noah on the Ketogenic Diet. Nope we don't have full control of his seizures. But we went from 150 tonic clonics (status included) each year, to less than 7 in the first year and half of the diet. And now just two in the past year and a half.

I just had to post Noah's prayer tonight exactly the way it sounded...

"Dear Heavnly Fodder,
Thank you for dis day.
Thank you for no seizures in 25 weeks...."

I couldn't be more grateful for the respite. I wouldn't wish this journey through epilepsy on anyone. However, I am grateful for the growth, the learning and the unity that Noah's epilepsy has given to my little family. I am thankful for the lessons in compassion that it has taught my other children. I am grateful for everyday that I have with Noah. I am grateful for the way that epilepsy has taught me to embrace people with special needs. I am thankful that I was the Mom that man needed when he fell because he had a seizure while crossing the street. I am thankful that I was the Mom that the Walmart employee needed when he fell onto the floor having a seizure. I am grateful that God has opened my eyes and my heart and given me a chance to help others. I am grateful for the people who helped us during Noah's seizures. I am deeply grateful for the people in the future, that will, if necessary, be a Mom or a Dad to my son, if he has a seizure when he is full grown and out in the world. I am grateful for the many ways in which epilepsy has changed how I see and experience life.

We are not defined by the events, illnesses or challenges that happen to us. Rather, we are defined by how we handle those trials, what we chose to learn from them and if we chose to grow and become more than we were.

"Thank you Heavenly Father!
Thank you for this day.
Thank you for 25 weeks without a seizure."


Sunday, January 3, 2010

Why Wouldn't You?

So many times, I've felt frustrated as I hear families struggle with the idea of beginning the Ketogenic Diet...

I will admit that the Diet is....

1. Overwhelming at first.
2. Heartbreaking as your child goes through withdrawals from their food comforts.
3. Time Intensive.
4. Detail Oriented.
5. Confusing.


Here are the positives from my experience -

1. Less neurological side effects than medications.
2. A feeling that you are making a difference.
3. Active positive involvement in your child's epilepsy control.
4. Seizure control for 2/3 of patients.
5. Possible medication wean.
6. A neurological "awakening" experienced by many keto kids.
7. HOPE!!!

I wish for all of you that your Keto experience leads to seizure freedom. Ours has not. But we have gone from 150 seizures a year, which included many many status seizures, down to 2 in the past year and a half!! I can tell you that the only regret I have is not starting the Diet sooner! We failed with four meds before trying the Diet. It would have saved us hundreds of seizures, week in and week out in the hospital, tons of needle sticks for blood draws, side effects galore and maybe.... just maybe.... we could have avoided the few and small developmental delays we are seeing now.

Please don't wait...........if you are thinking about trying the Ketogenic Diet........DON'T WAIT...........WHAT IF IT COULD WORK FOR YOUR CHILD?

©2009 KETO KID | by TNB