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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 3, 2014

Shifting Focus



taken by the talented Ross Goodman Photography
To start off, John had his sixth endoscopy on Monday, January 27th. He was so brave when it was time for him to leave us and go back with the anesthesiologist. I'm so thankful that they do not do endoscopies in the hospital here and the clinic is small so that John is never very far away from us. The staff is sweet and patient. Like I said, the anesthesiologist takes John back herself every time instead of a different nurse coming to get him every time. After being gone for about 20 minutes, Dr. L came out and told us that John's esophagus looked really good and sat down in the waiting room to talk to us about next steps. He sat there and talked to us until John was awake and ready to see us. 

John waiting to see Dr. L before his sixth scope.

We were scoping for peaches and grape seed oil this time. We had originally planned to scope between every 4 foods to cut down on the frequency in which we put John under sedation. We were not anticipating the difficulties we would have in determining which reactions were EoE and which ones were due to John making himself sick because he didn't like the change. We don't want to expose John to an offending food for long periods of time if he's having any sort of negative reaction. Obviously if it's just a sensory issue causing the reaction we can deal with that, but if it's an EoE reaction that would require removing the food. It's all extremely frustrating and why it's been nearly a year since we've scoped and only have TWO foods.
After a year it was time to scope again with whatever foods we had, even if it was only two. There was always the possibility that John was rejecting the other trials because the peaches were making him sick. We had to know what was going on in his esophagus before we moved forward.


Dr. L's office called me a few days ago to let me know that John's biopsy came back 100% normal! 
That means ZERO eosinophils! 
That means that peaches and grape seed oil is SAFE!
That means we have SIX SAFE FOODS!


Which brings me to the plan that we've decided on with Dr. L as far as moving forward: We have decided that with these six foods, John can have a pretty normal life. While we've been trying to focus on feeding therapy while doing food trials there was always the concern that John couldn't tolerate age appropriate textures due to restrictions in his throat from all the foods we had been trialing over the last year. Now that we know that there is no swelling or irritation from an EoE flare, we can confidently say that his avoidance of textures is a sensory issue and/or a learned behavior. Now that we know this, we have chosen to stop food trials and focus on feeding therapy. We are not going to introduce any new foods that could cause a flare and always causes stress. It's time to buckle down, dig in, and get John to where he can comfortably eat the foods we know are safe. Getting John to eat something other than baby food would mean easier food trials in the future, more calories, and a more normal life for all of us. 


We've come to a point where we feel like focusing on feeding therapy and John eating these six safe foods is more important than adding more foods to his list of safe foods. It was a hard decision to make and it's something we've been talking about for close to a year.
We have an amazing feeding therapist on board who knows what our goals are and is working really hard with John, here in our home, to reach them.


I am so very proud of my little man. He is so brave and always unbelievably happy. No matter what life throws at him he just keeps on smiling. He makes me laugh until my sides hurt and amazes me every single day. I cannot imagine my life without him or imagine him being any different. I'm thankful for him each and every day and wonder what I ever did to deserve him. I hope one day he knows how much he is loved and admired by me, the one lucky enough to be his Mommy.





1 comment:

  1. Beautiful. Very inspiring. Wishing you success in feeding therapy!

    ReplyDelete