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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Monday, February 13, 2012


John is going to have his second endoscopy on the 27th. The first scope he had was to diagnose the EE. Now every three months or so we will have another scope to check on the disease. As of now that is the only way to check on the count of eosinophils is to do a biopsy of his esophagus. The only way to know for sure if we have found a safe food for John is to check the count of eosinophils. If there arent any eosinophils built up then that means that whatever food we were trialing are safe foods. If there is a build up, then we have failed that particular food(s).
I don't know right now what the next step is if we fail a food. I think we can either just go back elemental and wait it out, or we might be able to rush things a long a little bit by doing another round of steroids. Once we are symptom free again we can start trialing again. If he is all clear then we can add another food or two. And we will continue with this routine over and over .....and over.
With the endoscopy they will put him to sleep with general anesthesia, place a tube with a camera on it down his throat and take a sample from his eosphagus to do a biopsy on. 
Last time they did this he started to wake up before he should have, we werent in the room like we normally would have been so he got scared and fought everything and everyone. It was heart wrenching. As soon as they opened the doors to the long hall way that is the recovery area I could hear him screaming and knew with out a doubt that it was my baby making that noise and that he needed me. A nurse was holding him and rocking him, trying to calm him down. I took him from her and he fought me too. He couldnt open his eyes, he couldnt make his body work, because he was still half asleep but he was fighting it. He gushed blood when they took his iv out too! After about 20 minutes of him throwing up and pushing me away while we both cried he finally fell asleep. We had to stay there for 20 minutes with out him throwing up before we could leave. I carried him all the way to the car and he slept while I put him in his car seat and all the way home. By the time we got home he was fine. A little loopy and wobbly but his normal happy self. By the next day it was like it never happened. 
Obviously this is not something I am looking forward to doing every three months! Everyone kept telling me how this wasn't normal, he shouldnt have been reacting that way, he was okay! It shouldn't happen that way again but who knows? Maybe his body just doesnt react well to the anesthesia. I guess we will see in a couple of weeks. Maybe one day they will come up with a better way to check his eosinphil count. Until then this is what we have to do. It sucks, but there ya go. I'm really concerned about this particular scope because we already introduced rice before this scope and he's been having a lot more symptoms but we won't know if any build up is from the rice alone or if we never got rid of them all in the first place.  

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John has always had some sensory and texture issues plus the oral aversion. Meaning, he wouldnt touch food or anything wet, cold, gooey or feed himself in anyway. He doesn't pick up things and put them in his mouth. Now that we are doing the Nutra I've been putting a small spoon full on his high chair tray and giving him the opportunity to play with it and feed himself. We are making progress! He has started to put his fingers in his mouth and lick the Nutra off his hands! I am beyond excited by this improvement that we've made even before his first therapy session!
Also! John is starting to walk!!! EEeek!! He took two steps today with out my support. He doesn't know he did it but he did! 
Speech therapy is on Thursday the 23rd and we will also see the Nutritionalist and get another weight check. 

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