Some news

    • January 31, 2014 at 12:39 am

      So, just wanted to share some news. We had our first normal ncv/emg in 8 years. Since this past summer (7 years since the nightmare started) things have felt back to normal. In August a ncv/emg was done and it said that he was having a backslide. I said no way, you are doing the test wrong. It was cold in the room, the fellow doing the test was new in july and he did not even measure distances or use the previous test for reference. he reported to our doc that the results were 15-20% worse I said no way. Next time the regular neuro is doing the testand not a fellow. So, 2 days ago the regular neuro did the test and said the test was completely normal now. that in fact it was operator error last time. So now begins the wean!!!!

      It was almost 7 years to the day. There is much to be said about the literature that states the immune system reboots itself every seven years. We will not know for sure obviously until he is completely weaned but this is a start. Say a prayer for us. It has been a long journey for a little boy now a young man. Will keep you updated.

    • January 31, 2014 at 4:20 am

      Hooray! I hope he continues to recover quickly, and I hope the seven year reboot is right-on. In my case, I would have about 16 months to go before reboot.

    • January 31, 2014 at 6:51 am

      Great news!!! Prayers headed yalls way!