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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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Thursday, January 5, 2012

John's Story- The Condensed Version

This is John and this is his story of life with out food.

Flash back to December 15th 2010 at 1:53am. That's when John was welcomed into this world perfectly healthy, weighing in at 8 pounds and 14 ounces, the 95th percentile!
The first day everything was wonderful, he was eating and sleeping like a dream. The second day, however, he started to get really fussy and was spitting up quite a bit. The nurses all said it was probably a milk sensitivity and switched him to Soy formula. Things got a little better and we went home with our Soy. 
We went home assuming that his spitting up was normal baby stuff, I mean what did we know? We'd never had a baby before! We took him in to see his pediatrician for his two week check up and he had lost a significant amount of weight. More than the norm for new babies. This was concerning to his ped so he started running the gauntlet of tests to figure out what was keeping our little guy from growing. We had blood work done (On Christmas Eve no less!) and an upper gi with barium. He was diagnosed with 'severe reflux' and given some medication. John continued to spit up and was occasionally vomiting. His ped switched him to so many different formulas that I can not even remember them all now to try to get John gaining weight but he could not manage to keep any of the milk based formula's down. So back to Soy we went!
By February John had dropped from the 95th below the 25th. His Ped said not to worry 'as long as he's growing'. At this point John was projectile vomiting multiple times a day, not growing but in all other areas such as sleep, mood, development, was just fine. 
By June he had dropped to the 5th. Ped said not to worry 'as long as he's meeting his developmental marks'. He was still vomiting multiple times a day but I could not get his ped to understand that I knew the difference between 'spitting' and vomiting. 
All this time I have no reason to believe that his ped doesn't know what he's talking about and trust him even though I have a nagging feeling that something is not right with my son.
By August he had dropped below the 3rd percentile and was not crawling and had only just started sitting up on his own for about a month. Needless to say we were starting to miss developmental milestones. What did Ped say? 'Let's not worry.... yet'. That was it, I was done. I started looking for a new Ped. 
I finally found one in October. He immediately sent us to a Ped GI specialist. We had another upper gi done and in November had an EGD (scope down the throat) done. 
That biopsy came back positive for Eosinophilic Esophogitis. 
English please?!
 Yea, that's what I thought too. I'll get into it in more detail later but pretty much he is allergic to food. All food. His body treats food like an infection or virus and attacks it making him vomit. He is now on a completely elemental, amino-acid based formula and nothing else.
You would think a kid like that would be miserable no? Well check this out...

This is John on his first birthday.
That's what he looks like ALL the time!
He is seriously the happiest baby I have ever been around.
Today John weighs a little over 16 pounds. He had gotten up to 17 and a half and actually doubled his birth weight last month but dropped back down this past week. 
I am writing this for him, and for me. Documenting our journey through this rare and relatively new disease. 
This is John's Story of Life with out Food.

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