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.
Friday, May 28, 2010
Good news but hard to understand.
So my neurologist was very impressed with my development. She talked about how aware and alert I am. She was happy to see that I have such great head control and that I am able to sit some now. I showed her all my new tricks. I even grabbed my toes for her. Now for the seizure part. I am still having 30-50 a day. They are not as intense so that is great. My doctor increased my topamax to see if that will help some. She is not starting me on anything new until we see what my EEG looks like June 8. She said it is ok for me to have spasms throughout the day as long as I am developing. This is very hard for my mommy and daddy to understand because we just want them to stop. So as of now we really just need me to continue to develop. Thats the most important part. Its crazy to think that way but as long as I develop its ok that I'm having little spasms as long as they do not get more intense. The EEG will tell us alot. Our greatest fear is that my EEG will start reversing again. We just have to pray that it doesn't because I can't be on steriods for a long period and that is all that seems to work for me. My neurologist also said that we are probably going to do some more testing on me. She wants to talk to the other neurologist in the department so that they can come up with the best plan for me. We will probably do a spinal tap and a test to check to see that my nerves are communicationg correctly. My mommy did talk to her about the keto diet. She said that is an option but she would rather wait and see how I do this next month. So it looks like more test in the near future and more EEG's to see how my brain is doing. A good thing is that my head is growing appropriately. That is excellent for a nero patient. Another good thing is that she said I am developing better than any other baby that she has seen that has gone through 2 rounds of ACTH. That just tells me that all your prayers are working. Thanks for caring so much about me and for praying for me. Love ya, Jadon
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