LIVING

With EoE, Allergies, Asthma and a G-Tube

6 Weeks

We met with the GI doctor. sigh  We’ve come to the conclusion Gage is just a very allergic kid. Since we haven’t found his trigger his body is just overreacting to everything he seems to eat a lot of. That is why he’s showing an allergy now to millet, sorghum and chicken. Gage is also still growing. He recently had another growth spurt and is on the upper side of the growth scale. The combo of those two facts have put us face to face with two choices.
1. We give his diet one more change removing the newly positive foods PLUS dairy.
2. We go ahead and put in a feeding tube.
We have the best GI doctor. She asked me if we wanted to make the decision or if we couldn’t she would do it for us. I expressed that Nathan and I had spoken all week about what we wanted to do with Gage. We knew in the back of our minds what was coming but we never said it to each other. We only spoke about the choices we would make in changing his diet. So I let the doctor know we wanted to give it one more go around before calling it quits. I can’t in my heart just do the tube if I feel like I can try one more change. I have to know I’ve done everything I can for him. Gage’s esophagus is at a point where we start risking him stricturing shut. So our game plan is to change his diet and scope again in 6 weeks. He won’t be completely healed by then but we will be able to tell if there’s improvement at that time. If there is no improvement then it’s time to put the feeding tube in.
So Gage’s new list of do not eat foods are:
beef – along with anything containing gelatin
chicken/turkey
eggs
wheat
rice
oats
sesame
corn
millet
sorghum
potato
sweet potato
soy
celery
mustard
tree nuts
peanuts
fish
shellfish
pea
dairy
buckwheat
coconut – tested low but we’ll use it sparingly for baking. I don’t think I would risk letting him drink it daily and his body starting to highly reject it
apple is in the blood test and possibly may get taken out
We are still waiting on the final word from the GI doctor for the blood test we had done. Chicken was a low positive and we didn’t skin prick for rice or oats so those were in the blood test as well. I highly doubt we can add rice in but it would be a huge help.
We’ve made it through the weekend ok. It’s going to be a tough 6 weeks, but hopefully worth it. The big thing in our house is the boys have hot cocoa every morning. It’s basically milk with hershey’s syrup or carnation instant breakfast warmed up in the microwave. They drink it religiously like I drink coffee. So we had a talk why he can’t have it. He told Charlie immediately that it wasn’t fair for him to drink it if he didn’t get to. So I’m now on a panicked search to find him some hot cocoa. There isn’t really a replacement milk we can use. Coconut, occasionally with risk. Goat’s milk we don’t want to risk since he’s so allergic to beef and broke out in hives when he ate deer. We would really have to test him on something like hemp before giving it to him.  Charlie and I had a talk and Charlie told me right away he would go hide in the basement to drink his hot cocoa. I laughed a little. He won’t give it up, but he’ll figure out how he can still have it and make everyone happy. So for the last two days he’s drank it in the bathroom.
I attempted pancakes for Gage Sunday morning. By noon I had “donuts” ready. Lot’s of tears and ruined batches of goo but I came out with a winner and they both at them right up! Phew! Keep an eye out for the “I’m allergic to everything donuts”.
I have noticed in just a short 36 hours of being off of dairy that the dark circles that are always around Gage’s eyes are gone. I do hope it correlates to what’s going on inside as well!

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August 26, 2012 - Posted by | Gage's allergies, LIVING | , , , , , , , , ,

4 Comments »

  1. That is such a huge decision, I agree… I would want to make sure I tried it ALL before we went that route.
    I hope that the diet change shows some improvement.
    I wonder with his sensitivity, could just being around those triggers, either in someone else’s food or out and about, just the smell of it be causing his “hidden trigger”? My son can’t be around poultry cooking because he will have a reaction just be being near it, he doesn’t have to eat it to react. I’m not sure how you prepare everyone’s foods, because everyone in your house has different sets of triggers, but that might be something to look in to.

    That’s great his circles cleared up after dairy elimination!!!!

    Like

    Comment by allergictotheamericandiet | August 27, 2012 | Reply

    • I had never thought of the smells. My husband is the same with poultry. Geesh, I hope that’s not it. I’ll have to vacuum seal off my kitchen! I don’t even know how I would cook. I’m already cooking for 3 special diets!

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      Comment by livingtheallergylife | August 27, 2012 | Reply

      • The family that was on Anderson, their youngest son is that sensitive and that is what made me wonder about mine. Sure enough once we were able to figure out how to work around it, he stopped wheezing at night time and coughing episodes lessened up. If we want poultry we have it on the grill outside, and eat after he goes to bed. We noticed at Thanksgiving last year he was coughing and wheezing in the house with the turkey cooking and if we opened the oven it made it worse. He actually threw up after being in the kitchen after we took it out of the oven. Never ate any but just being near it caused so many issues. It might be something to look in to and see if you can pick out (hopefully one) item that he can’t have but others can that he’s around. Gavin’s skin reaction to poultry was his largest whelp during the tests (it took over two surrounding test pricks)
        Good Luck mama 🙂

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        Comment by allergictotheamericandiet | August 27, 2012

  2. I’ve been occasionally reading your blog. I have a 5 year old with EoE. He is on an elemental formula diet after having a long list of allergies like your little guy. It was seriously the best thing we could have done for him. It was hard but he is so much healthier. We did NOT have to get a g-tube (feeding tube). I felt called to comment because I wanted to let you know that just because you are on a formula diet does not mean that you necessarily have to go the tube route. We had an NG tube for him for the first 8 weeks, for him to get the amount of formula he needed. By about a month of having it, he was drinking 5/6 of what he needed. Previously, we had tried to supplement with the formula (E028 splash) and he would not drink it and it was torture. But, when not eating anything else, and his body starting to heal, he started to drink it. At the end of the 8 weeks, he was drinking all that he needed to and thus no more NG tube and no G-tube. That was 6 months ago and he is thriving. We’re doing food trials with him and unfortunately they are not going well but he is doing so much better, internally especially, that it is worth it. The E028 splash is in a juice box and we call it his ‘juice box’ and that helps, socially, at school when he is only drinking that and his current trialing food (sorghum). I hope that Gage does wonderfully removing dairy and that solves the problem. We were in the same situation (dairy being the only thing top-8 left and a bunch of other things removed) but unfortunately it didn’t. If you haven’t already checked out the following website, there is a wonderful support group for EoE/EGIDS: http://community.kidswithfoodallergies.org/displayForum/forum/eosinophilic_disorders

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    Comment by Devon | September 5, 2012 | Reply


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