Update on my son, Traeven

I wanted to give a little update on my son, as I havent had a chance to do so for over a week now. Thanks to those who have written asking about him and to those who have so diligently remembered us in your prayers. Please dont back down on those prayers, they have been our life line. So far we know nothing definate. His sleep study went well, and they gathered lots of interesting information, just nothing concrete to say exactly what it might be. He shows many characteristics of Narcolepsy, but many atypical things as well. He was put on a stimulant called Provigil to see if it will help with the daytime sleepiness. So far it hasnt done anything but it has only been 5 days. The neuroligist said we should see a difference immediately, but not so far. We are willing to try another week to see if it shows any changes, if not then we will take him off it, I dont want to fill him with medicine that doesnt work. On Friday they took blood to run 23 different blood tests, we have no results of yet. Things continue to be about the same for Trae and must admit it has gotten pretty stressful around here trying to manage him and his needs and keep up with the other 6 kids now that summer break is here. They want to go and have fun and I dont blame them, but I just dont have the energy to drag Trae along in the wagon everywhere. I have to usually anticipate him sleeping at least 18 hours a day so that doesnt leave alot of time for going places with him in awake states. Thanks again a I will keep you posted too. janelle

Thank you so much for the update I have been waiting to hear about your son. I am still praying for him and your whole family. May God bless you all. Sarah T 235-180-112

Janelle - I'm so sorry to hear that nothing has been resolved yet for Trae - poor little guy. And here you are trying to take care of yourself and all the kids - you're a brave woman and a dedicated mom. You'll be in my thoughts and I hope they find some answers soon so Trae's life and yours and the family's will be better. Yes - please keep us posted. Gail

PS - I grew up in Stevens Point - so I know just where you're located. Are you taking Trae to Marshfield for his medical stuff?

Gail, Yes we are Doctoring at Marshfield. Trae has two Neuroligists, one specializing in pediatric Epilepsy and one in Sleep disorders. Both have been in contact with Neuroligists and Endocrinoligists at Mayo and Childrens Hospital for some advice of what to check next and any ideas they have. Tomorrow the sleep disorder Dr is to call me at 8:00 am to tell me what is next. The only change I noticed as today went on was that Trae was extremely agressive and had 4 high pitched screaming fits at different times, which is not at all his personality. I am getting so confused and wore out! Thanks for your kind words of support! Janelle

Wow Janelle - sure seems like a long road, but at least it looks like they are getting to the bottom of it slowly but surely. I am eager to hear what they do next and how they interpret the results of the sleep study. I feel for the little guy.....and mom! Dina