LIVING

With EoE, Allergies, Asthma and a G-Tube

Deceiving

Looks can be deceiving. Eosinophilic Esophagitis likes to play that game. I spoke with the GI doctor on the phone Friday. She told me she knew the boys biopsy results since Tuesday but wanted to give us the week to be happy.

Let’s start with Charlie. His esophagus looked normal, however, eosinophils are present. When the GI doctor takes biopsies they take 3-4 in each area that they take them in. EoE is a patchy disease so they want to make sure they are getting a clear reading. Charlie’s upper esophagus was only a 4. His distal was 30 on one biopsy and the other 2 in that area were zero. The distal is the lowest part of your esophagus. Charlie has never really had much inflammation. His first scope was 24 eosinophils present and there was no inflammation.

Treatment for Charlie will be to do skin prick testing on all foods and see what that says. He hasn’t had a skin prick test in 2 years. There maybe something that he’s eating a lot of that’s causing the patch and small number of eosinophils to be present. We are not putting him back on steroids since he doesn’t have inflammation and because I asked that we wait and see what happens.

Our hopes for Gage were high, even higher when his esophagus looked so good. Unfortunately, Gage is worse. In one area he dropped a little but stayed the same. He was 30-50 and now it’s 20-50. Not great improvement but some. There’s a range because of the 3 biopsies. See how that works? In another area though he jumped from 50 up to 70. Even the GI doctor is frustrated. We have been told from the start we’re not the typical family with allergies, allergy testing or Eoe. This scope for Gage proved true to that statement.

Our options:

1. Do patch testing again on him and see what comes up.

2. We wait it out for 6 months, stay exactly the same with diet and steroid and see what happens.

3. He goes on an elemental diet, which means we put a feeding tube in.

The GI doctor said it’s up to us. It’s a very hard decision. She even suggested we get a second opinion. This is why she waited until the weekend to call us.

Our decision: We will not patch test because if we do and more foods come up positive what will be left for him to eat? If we wait for 6 months we risk him getting worse. His body is already attacking more and more foods. Along with that, he can’t thrive on what he’s eating now. He’s lost weight since this last diet change. My boys aren’t picky eaters. When you don’t have much left to eat though food gets boring. Gage is also basically on an Atkins diet but with out the diary and fat content. A four-year old can’t grow on a diet like this. His brain is still growing as well as his bones and muscles. It’s almost selfish of us at this point to keep him from the nutrition he needs. So with that said we made the choice to have a feeding tube put in. We will be doing one that goes directly into the belly. I explained to the GI doctor that Gage would never leave the house if we did the N-tube, through the nose. If it were Charlie he could pull it off no problem. Telling everyone he meets why he has it and what it does. That’s not Gage’s personality. She agreed to do what ever works for our family. I also let her know that a second opinion wouldn’t be something we would do. I know we’re at the point of a feeding tube and any other GI doctor probably would have pushed it on us earlier on. This doctor worked with us and let us go with a plan so that every other option was exhausted.

There is that tiny chance that if we did wait 6 months he could be better then we could add food back. Is it worth his health though when he’s a growing pre-schooler? We didn’t think so.

One other freak problem our family has is we don’t have symptoms. If we had symptoms ruling out certain foods would be so easy. Many children have chest pain, belly aches, diarrhea, rashes, etc. We don’t have any outward guides to go by. Ever wish painful symptoms on your kids? Our first GI doctor didn’t even want to scope Gage because we had no other symptoms than multiple food allergies. Gage only has a handful that he actually is truly allergic to.

Once the feeding tube is in place we have to get a clear scope then we can add food back into his diet. He can eat things like cotton candy and smarties while he’s on the feeding tube for now. There is a small chance though that we don’t get him down to a clear scope. That is a different ballgame the doctor said and we’ll cross that bridge if we come to it. Meaning it would probably be a life-long feeding tube. Let’s pray that doesn’t happen. So, when we do get a clear scope the doctor would typically give us some of the least allergic foods to try first. A grain, fruit, vegetable and meat. When most kids start adding back foods this is when symptoms are a huge help. You add back a fruit for two weeks then the vegetable an so on. Let’s say you start having chest pain after you add the vegetable. You would know not to keep eating it. We don’t have that problem, no symptoms. So adding foods back maybe a lot slower for us. After you eat the new foods for a period of time you are scoped to make sure you’re still at zero eosinophils. If you aren’t then all are taken away. It’s a very long a frustrating road ahead. He will be scoped more, if we wish. Just depends on how fast we want to get things back and how well he does. It is always our decision though to take a break. Go 8 months or however long with out scoping and just let him be.

There is no minimum time frame of how long he will have this feeding tube.

He can still take a bath and swim in a chlorinated pool. He can cover it and play on the beach. Contact sports will not be allowed, but we have plenty of time until we get to that.

I worked my butt off feeding him since May of 2010 when he was diagnosed. It is all I have done. I pride myself in the fact that he is still growing and is in the 70th percentile across the board. I just wonder how big he would be if he didn’t have food allergies.

Even though I know we are at the point that we have to take away food I feel defeated. I let him down. I couldn’t beat this stupid disease for him. It won.

I hope he takes this in stride. I fear it’s going to be very hard for him though. We’ll see.

Please say a prayer for my family.

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October 21, 2012 - Posted by | LIVING

2 Comments »

  1. Praying for you as always! Let us know how we can help! Hugs!

    Like

    Comment by Jessica | October 22, 2012 | Reply

  2. Oh Kara – I am so sorry to read your news. I continue to pray for your beautiful family. You are so strong and I believe both Charlie and Gage get their strength from you and Gage will be able to face this incredible challenge because of the faith and determination you demonstrate for him! Hugs and prayers being sent!

    Like

    Comment by Jennifer Thompson | October 22, 2012 | Reply


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