The Eosinophilic Curse

We've had a busy few months. Sadie had her tonsils and adenoids out to see if it would help with her chronic vomiting. Unfortunately she is still having episodes. They aren't as severe or long as they were, but still happening. Our next step is a PH probe that they will insert through her nose to test her reflux. We will be talking about that August 1st.

Cameron also had an endoscopy (his 17th) a few weeks after Sadie had her tonsils out. He was showing signs of an EE flair up. He was complaining of stomach pain, vomiting, and choking. As soon as she inserted the scope into his esophagus we knew it was bad.  Here is what we saw.

See all those little white blister looking things? Those are Eosinophilic Abcesses. The pathology report indicated that he had greater than 100 eosinophils per high power field. what this means is that there were so many of these cells that they stopped counting at 100. To put this in perspective, 18 eosinophils per hpf is considered high. To quote the M.D. evaluating these results, he states, "The patient has had prior esophageal biopsies with moderate levels of eosinophilia compatible with eosinophilic esophagitis. The findings in the current biopsies are certainly compatible with eosinophilic esophagitis. Not only is there a very large number of eosinophils present there is also superficial layering of the eosinophils and extra eosinophilic granules. Small occasional eosinophilic microabscess can be identified (4 or more eosinophils clustered together)."

What does this mean? His body is attacking itself. The food that he is eating is essentially poisoning him. We went to Dr. Wu for allergy testing again. We did a prick test first to test for immediate reactions, then a week later we did patch testing to test for delayed reactions.

 

Prick Testing

 

 

Patch Testing

 

 

Our results found that Cameron is now allergic to wheat, beans, yeast, egg, barley, and oat. Cam now has to be gluten free. He is having a hard time with this. for the last 18 months he has been able to have whatever he wanted that didn't contain egg. He can no longer have any pre-made bread. Even GF egg free breads contain yeast. I attempted to make an allergy free bread. It turned out more like a quick bread. He wasn't a fan. For carbs, he sticks to Trix cereal and a cracker by Glutino that we finally found after many many other cracker purchases. With the allergies and his food aversions, it is making it really hard to get his nutrition. We've started tube feeds again. He also showed a vitamin D deficiency that we are supplementing for.

 

It's heartbreaking to have to tell him no all the time when he's hungry. He's ALWAYS hungry now and nothing is suppressing it. Before carbs were 90% of his diet. I'm usually upbeat and positive about all this but last night I broke down after watching a commercial about allergies. This stinks. It wouldn't be as bad if his body would just pick an allergy and stick to it. They change constantly. He is going to have to deal with this forever. Gtube feedings, multiple meds, label reading, etc... We really need to find a cure.  Until then, we will just take it one day at a time. One meal at a time.