With EoE, Allergies, Asthma and a G-Tube

Feeding tube awareness week – Feb. 7 2014

As you know I have two tubies. So we are definitely spreading awareness this week.

Today’s topics are: Why does my child have a feeding tube? What positive benefits have come from tube feeding?

Both of my kids have feeding tubes because they have Eosinophilic Esophagitis and their bodies have become so reactive to food we had to remove it all from their diet.

Will they ever eat again? Yes. We will trial foods and continue scoping and taking biopsies of their esophagus to keep the disease under control and figure out what their trigger foods are.  Gage’s current safe foods are: blueberries, rice, cocoa, strawberries, lemons, oranges, tapioca, fin fish, green beans and black olives. His trials currently are cherries, pork and tomatoes. Since Tinleigh has just gotten her tube a few weeks ago she is only allowed smarties, sweat tarts and pixi sticks. Mainly sugar candies with no corn syrup.

So how long will they have their tube? It is unknown. It all depends on how their food trials go. They need to get enough food back into their diet that they can have the nutrition they need with the disease under control. It could be three more years it could be life long.

What positives have come from having the feeding tube? First off my kids have grown! Since DEC 2012 when Gage got his button he has gained 13 pounds. That’s huge for a five-year old. He is definitely benefiting from having a tube.  Tinleigh hasn’t quite had her tube for a month yet and she’s already gained a solid two pounds. I’m sure getting the nutrition they need has helped brain development as well.

A few positives for myself as their mom: I don’t have to figure out what to feed them everyday which was very hard on such a limited diet. I also don’t have to pack a million snacks and food if we go anywhere. Now it’s just a bag of formula.

February 10, 2014 - Posted by | LIVING | , ,

1 Comment »

  1. Your Mom has kept us updated since being in Florida. So happy Tinleah got a good report today. Keep all of you in our prayers.


    Comment by Dianna vandeborne | February 10, 2014 | Reply

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