EOE Update 1

I haven't written an update here, on my blog in months!!!!  Since the experience we've been having with my 8 year old has been so significant, I thought I would document as much of it as possible until we get through it.

The name of the allergic condition he has, is eosinophilic esophagitis (EOE).

He started out, in October, at about 67 pounds (his normal weight), having trouble swallowing solid foods.

This progressed over the next couple of months and one of the biggest alerts we received was at Granny's birthday dinner, at the end of December, when he had a very hard time. We thought it was routine allergy problems. Over the next few weeks the problem got progressively worse.

In February he was down to only eating things like tomato soup, yogurt, ice cream, pudding. He couldn't even eat mashed potatoes.

I found out about EOE when I posted a question on a Facebook group (Essentially Healthy) asking if anyone had a child with difficulty swallowing. Our next step was to visit an ENT and have them perform a scope and see if they could find anything. They could not.

He sent us to the GI doctor, whom we visited later that week. After the office visit, he scheduled an in-patient surgery to look further. It was through that test (upper GI endoscopy or esophagogastro duodenoscopy), we were able to diagnose the EOE.

After that point we were told to try swallowed (vs. inhaled) steroid medicine - flonase, along with Prevacid and Nasonex.  After several weeks, there was no change.

We decided to further research and try to figure out if there was a natural way to treat the condition.

Several sources suggested that we could try either a) an elemental diet or b) an elimination diet.

We tried the elemental diet first (with Neocate formula and fruit drinks only) and he was just not getting enough calories.

With both elemental and elimination, he was sad that he could no longer have the yogurt, pudding, and chocolate that he had been enjoying before.  We had to remove those due to the milk content.  We also had to remove the yummy tomato soup he had been eating, due to the acidic content in the tomatoes.

So now we're trying the elimination diet, removing all of the high-allergenic foods such as soy, milk, fish, nuts, wheat, citrus, etc.  He can have soups and juices (still looking for a smoothie recipe that he will LOVE) and we also supplement with the Neocate fruit drinks.  Each little "juice box" contains 210 calories of great nutrients!

Last night we were happy that he liked the black bean soup Jeoff made for him.  He'll get over 200 calories in one cup and there's lots of healthy veggies in the recipe.  Other than that, he's eating brocolli an organic brocolli soup we've been buying.  We tried sneak chicken into it but it must not have been the right proportion.  He didn't like it.

He had been eating chick and potato soup made with rice milk, but he started having what may be an allergic reaction to the rice milk so that's off the menu until we come up with another milk to use instead.  He can't do cow's milk, goat's milk, almond milk, or soy milk.  He didn't like flax milk or hemp milk.  I think next time we'll try coconut milk again.

Yesterday he weighed 64.8 pounds.  That's up 1.4 pounds from two days ago.   Praise the Lord.