Jadon's Infantile Spasms Story
I created this blog so that our friends and family will be able to follow Jadon as he fights to overcome Infantile Spasms. I also hope that if anyone else is going through this, they will find this site helpful. I have posted a video of what infantile spasms look like, as well as everything we are going through. I hope by posting this I am able to get help for other children who are having these spasms. The earlier this is diagnosed the better. Feel free to leave me comments. I love to hear from you. If you have any questions just email my mommy. She likes to help people in any way she can.
Wednesday, October 20, 2010
Ketogenic Diet
My seizures are staying about the same now. I'm only having about 20 during the night and then about 40 during the day. So the medicine is definitely working. We are very thankful that my seizures are down. We still aren't satisfied with 60-80 a day though. Mommy talked to my neurologist in New Orleans today and we are going to start the ketogenic diet. Mommy and daddy have been researching between Vagabatrin and the keto diet since we left Boston. They both think that it is less risky to do the keto diet. We know that it is going to be hard, but we would rather start this diet while I'm still young. The diet has a very high success rate. We went and got my vision checked and talked to the eye doctor about the medicine and we just don't want to risk vision loss right now. My strengths are my vision and my personality. I already have so many issues and we think its too risky. So we are waiting for the neurologist to call us back with a date to start the diet. I will have to start it in the hospital and stay for 4 days. We are not looking forward to the hospital stay but we believe that this is the next step that we should take. In Boston we had decided to go with Vagabatrin, at the last minute the doctor came in and said try Banzel first. We believe this happened for a reason and that the diet is the right way to go. Hopefully the combination of the diet and the meds that I'm on will give us seizure control. If the diet works, I will be on it for two years. Two years is also when Boston wants to see us back to repeat the test that they did recently. Please continue to pray for me. I've really come a long way in the last week.
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1 comment:
Best of luck with the Keto diet. As you already know, we never did it so I dont have wonderful words of wisdom for you ha!! But your right, it has proven to be VERY successful and we pray that success carries on with Jadon.
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