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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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Tuesday, June 5, 2012

Formula and Contact Reactions

I wanted to write a little bit about what John eats. Right now he is totally elemental, meaning he does not eat any foods, he drinks an amino acid based formula, also called elemental formula.

From what I understand this formula is safe for John because all the proteins have been broken down as they would be by the body during digestion. Since he is allergic to mostly the proteins, they have to be processed out of his food for him to be able to tolerate it. 
The formula that John drinks is called Elecare and it's artificially flavored with vanilla. There is another brand that comes in chocolate, vanilla, and fruit flavors, called Neocate, but for whatever reason John has a reaction when we give him Neocate. Neocate also makes a juice box that I have mention before in my posts but just like the regular Neocate, John cannot tolerate the juice boxes either.

For the past 17 months I have mixed one bottle at a time as John needs them but just this week I've started mixing larger quantities, a day's worth, first thing in the morning and keeping it in the fridge. After mixing, the formula is good in the fridge for 24 hours. John drinks about 20-25 ounces a day so I mix up 22oz in the morning and our goal is to drink it all plus a small bottle before bed.
To be as accurate as possible (and so I dont lose count!! that's a lot of scoops!!) I've started measuring out John's formula using a gram scale. 

Now when John needs a bottle, I can just pour 6-8oz into a bottle and feed him. I think this is going to make my life a lot easier. At least on the days when we are at the house all day. 
If he does not finish that 22 oz in 24 hours I have to pour the rest down the drain. So if we are going to be out of the house for two or more feedings it would be a waste for me to mix a large amount in the morning.

Our whole life is trial and error when it comes to John. 
We had family in town visiting and staying with us this past week and I had noticed that John had been throwing up a lot more. He had not been exposed to any foods to my knowledge so what was going on? After thinking about where we had been and what we had done in the past few days we finally figured it out... I think... I said this was all trial and error right?
Well, turns out, we had not been strict about where our guests ate their food or anything like that. John's cousins had been eating in front of the TV and playing with all the same toys as John. I thought John was safe from food sitting in his high chair while we all ate then letting him play when we were done....
No one thought about the fact that food is dropping on the floor, no matter how vigilant we were about picking up after them, food is on their hands, then they touch the same toys... food is on all of our faces, then we kiss on John's face... it's called contact reaction.
The worst thing about it all is that we ALL thought we were being so careful!! No one did anything intentionally. 
So after changing a few rules in our house, no food outside of the kitchen, wash hands and faces after eating before touching any of John's toys or John himself, and after the boys helped me clean all of John's toys, things got a lot better. John stopped throwing up.
One of my bigger fears is that no one is going to want to be around us anymore for fear of making John sick just by looking at him wrong. I want our friends and especially our family to feel welcome and comfortable in our home. Our son's safety will always come first but with just a few simple rules we can all make that possible.

There are some other things going on right now with John that I cannot post about until we get some more answers but I feel like he just cannot catch a break. Seems like every time I feel like we have things under control and we know what's going on another Dr throws something else onto our plate. Our plate is full thank you! Sorry to leave on such a suspenseful note I'm not trying to drag things out to keep readers coming back, I just don't have enough information to post about right now.
I'll leave with another picture of my beautiful baby boy, always smiling.

Thank you for reading!!

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