It's Official - Another, Possibly THE Diagnosis

Well, today was the much awaited GI appointment for Beans. As with everything in life, there was good news and bad news. The good? He's 54 pounds (10-15%) and 51 1/2 inches (25-50%)!! Height and weight are great. More good news you ask? Sure, here it is - we now know the reason Beans has had so many issues. The reason that no matter how much food he ate by mouth, he would never gain - it was like negative calories. The reason for his low endurance, leg pains, headaches, chest pain, and stomach pain. The reason for the dark circles under his eyes and the redness around them. The reason for his horrible, bleeding diaper rashes for so long. The reason for his asthma. Even possibly/probably the reason for his subglottic stenosis (airway abnormality) and chronic ear infections. (Though the last two could be caused by his genetic disorder, there's not enough research on either to know for sure.) Drum roll please......Beans has Eosinophilic Esophagitis.

What in the world is Eosinophilic Esophagitis? It's a rare (of course, this is Beans we're talking about lol) disorder characterized by the infiltration of a large number of eosinophils, a type of white blood cell, in the esophagus. Eosinophils are an important part of the immune system, helping us fight off certain types of infections, such as parasites. So basically, Beans' immune system sees food (EVERY food so far, even the most generic, generally safe foods such as watermelon) as an invader that must be fought off and destroyed. In attacking the food, it also damages his esophagus and reeks havoc on his entire body. The GI considers him a very severe case, due to the number of foods he reacts too and the severity of his reactions (since they affect his respiratory system they can be life-threatening).

There is NO cure. He will NOT grow out of it. The treatment is an all elemental diet. Elemental consists of three options all made from the basic amino acids of foods rather than the food proteins themselves. The three options are all formulas - Neocate Jr, Elecare, and EO28 Splash. All are repulsive, vile tasting drinks. Thankfully Beans will continue receiving it through his G-tube as he has for many years.

You thought that was bad? Well, there's more. First, Beans' very first endoscopy that he had at age two showed a severe case of EE. His prior doctors (basically every GI in Utah) all blamed the results on reflux, despite having other testing that showed NO reflux. In all likelihood, he never needed his stomach surgeries (other than having the g-tube put in) to treat the reflux. He needed to be put on the special formula. Second, Beans is allowed NO FOOD - none at all - for at least a year. In one year they'll rescope him and if he has a clear scope he'll be allowed to trial one food every several weeks to see if his body can handle it.

Beans is devastated. His health has improved immensely in the few weeks since his doctor took him off food, but this is very hard. Imagine one day you suddenly weren't allowed anything except a nasty formula. He was a trooper the past few weeks, but hearing that nothing will change for at least a year broke this little boy's heart. The GI hesitantly is allowing him to drink lemon-lime flavored Gatorade as his one concession until next summer. If he starts showing any signs of reaction though, this will be gone too.

My mommy heart is broken. I can't let him see how sad I am for him. I must remain upbeat and show him all the things he's so lucky to have, but when he asks for food - and I'm not talking candy, I mean chicken, broccoli, things others would love to have their children begging for - all I can say is, "No, hopefully we can trial it in a year."

On the way home he cried and cried. Finally I convinced him to play his DS that Uncle J and M so kindly gave him. Then I started to here that familiar giggle. Sure, there will be bumps, there will be tears, but there is also smiles, cuddles and lots to look forward to. He's still the same wild, crazy man Beans he's always been. Now he'll be a healthier version. :)