Sigh.

***warning**** This blog entry isn't pretty.


Bryce just can't catch a break. He had an upper endoscopy (EGD) performed last week at Mott; they were looking for the cause or looking to rule out possible causes of his chronic diarrhea. The EGD itself went smoothly. Bryce played in pre-op and seemed to enjoy himself. Mott is a great place to be--they had a play therapist working with him and the staff were great. Cow even had his own gown and ID tags, too. We had super duper staff and learned that the drug Propofol (yes, of Michael Jackson fame) is a no-no as it contains egg.

Here's the super-cute dude in pre-op:

Blowing bubbles was a HUGE hit!



This is an amazing, one of a kind, distraction toy. It has mirrors, fiber-optic lights, a projector, music, and bubbles!



Off to surgery he goes! We opted to have them administer Ver-sed, which allowed him go willingly
with the staff and not be upset.

We got the results of the scope this past Friday and they were a bit upsetting to say the least. Bryce has been diagnosed with Eosinophilic Esophagitis or EE for short. What? We thought he was CLEAR of EE based on his scope in Jan 2009, which ruled out EE. Evidently, he either had it then but they didn't biopsy the exact spots w/eosinophils OR he's just developed it.

What is EE?  Here's a decent definition: Eosinophilic esophagitis is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of eosinophils, a type of white blood cell.  Eosinophils are white blood cells (leukocytes) manufactured in the bone marrow and are one of the many types of cells that actively promote inflammation. They are particularly active in the type of inflammation caused by allergic reactions. Thus, large number of eosinophils can accumulate in tissues such as the esophagus, the stomach, the small intestine, and sometimes in the blood when individuals are exposed to an allergen. The allergen(s) that causes eosinophilic esophagitis is not known. It is not even known whether the allergen is inhaled or ingested.  (from medicinenet.com)

What does this mean, exactly?  I've been all over Google University and in reading about EE on reputable medical websites the main information I've learned is that EE is a life-long illness. You can't "cure" it, you can only hope to send it into remission. This is achieved by figuring out what is triggering the EE in the first place. This typically involved putting children on a very restricted diet or even an elimination diet. The bummer statistic I found was that 74% of children find remission by going on a Top 8 free diet. The Top 8 allergens are: milk, wheat, eggs, peanut, tree nut, soy, fish and shellfish. As Bryce consumes none of those things, he's going to be very tricky to figure out.

I was told by the pediatric GI that one thing that might have to happen is that Bryce will go on an elemental diet. This  diet consists of only drinking elemental formula (which insurance doesn't cover) and not eating ANY food at all. Many kids end up with an ng tube for feeds because the elemental formula tastes terrible.  They are on the elemental formula for 3 months or longer, then re-scoped to determine if Eos (eosinophils) are present. If none are present, you add foods back in, extremely slowly, and watch for reactions and then re-scope again.

The standard therapy that EE kids are started on is swallowed steroids. This puts the steroid where it needs to be (in the esophagus) and has less side effects than steroids taken in other forms. Bryce will be started on Pulmicort in a swallowed form, twice a day.

We have his regular pediatric allergy appointment next week and I'm already drafting a list of questions. I assume we'll do some skin testing and beyond that, I just don't know. We suspect he has new allergies to sesame and cinnamon.

U of M has an EE clinic. Bryce will be switched over to their care in 6-8 weeks. At the EE clinic, he'll see a different pediatric GI and allergist, who will coordinate his protocols. I'm told to expect repeat EGDs and to expect this all to take a long time to figure out. The "best" EE clinic in the USA is at Univ. of Cincinatti, and I'm told that U of M follows Cinci's protocols/research, so that's good.

Bryce is the same kid now as he was prior to this diagnosis, which is what we have to keep in mind. What this diagnosis will mean for our family down the road? We'll just have to wait and see.