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, December 1, 2010
Well check but not so well with seizures
So today has not been a great day for me. I had about 150 spasms. We really don't know why. Mommy called my neurologist and she said to give it a couple of days. We did increase my diet yesterday and we increased my banzel. It shouldn't be the banzel because it decreased my seizures to 40-60. The neurologist said it shouldn't be the diet but I'm not so sure yet. We will just have to wait and see what the next couple of days bring. I pray that it's not the diet. I've read that about 10% of patients seizures increase on the diet and again I pray I'm not in that 10%. Now you see why I don't want to try vigabatrin. Yes vision loss is only in 15% of patients but I'm always in that rare category. I had my well check today at my pediatrician's office. She said my nose looks much better. So the antibiotic is working. I am now 21 pounds and 31 1/2 inches long. Yes I'm very long for my age. We decided not to do any vaccinations. My mommy doesn't want them done and my pediatrician agreed with her. So no shots for me at this time. I really need your prayers right now. This increase in seizures is very discouraging for me and my family.
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