Eosinophilic Ganglionitis. Looks strange. Hard to pronounce at first. The reason behind Zack’s discomfort. We have a name. And that’s about all.
I can’t really tell you much about it, although I’ve read every article I can find on the subject. I “kind of” understand what I am reading, for a moment and then I don’t. My brain starts to shut down after reading such big words and trying to figure them out! I know, you thought I knew a lot, you are not wrong. BUT, this one is a bit tricky.
Zack’s GI doctor took time out of his crazy busy day last week to meet with us to go over a new course of action. I appreciate how kind he is to us and how patient he is with our (my) zillions of questions. I feel very confident in what he has described to us and let’s face it, there really are no experts in eosinophilic ganglionitis. I’m hoping our doctor will become the expert because he’s figured out some wonderful way to treat Zack and everyone will flock to him for advice. A girl can dream….
Our plan is to have Zack go under general anesthesia again in the next few weeks for an endoscopy. If you’ve read any of my other posts, you know this is not my idea of a good time, but Jim and I feel it is important. Z’s doctor needs to have a starting point from which to begin treatment and a way to measure the effectiveness of the treatment.
I believe that his entire intestinal tract will be studied. He’ll have a breathing tube and “they” will breathe for him as a scope is placed down his esophagus looking at every part of his upper GI tract. Since he has two stomas, the doctor can look through them both to see his small and large intestines as well as looking from below for evidence of pesky eosinophils. Once we see how much or how little of his GI tract is affected, we can formulate another plan on how to treat Zack. Or his doctor can…you know, because he is the real doctor. I just play one at night.
I have been trying to gain an understanding of the role of eosinophils. What are they and what do they do? I read this from Cincinnati Children’s Hospital:
Eosinophils have many diverse functions
The functions of the eosinophil are varied, some of which are very similar to other white blood cells. They are implicated in numerous inflammatory processes, especially allergic disorders. In addition, eosinophils may have a physiological role in organ formation (e. g. postgestational mammary gland development).
Eosinophilic functions include: movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses.
Eosinophils can be either helpful or harmful
At one extreme, such as in the illness erythema toxicum, eosinophils play the role of a beneficial modulatory element or an innocent bystander. At the other extreme, represented by conditions like Loeffler’s disease and idiopathic hypereosinophilic syndrome, eosinophils are linked with permanent pathologic changes.
That makes sense. Then I read the articles our doctor gave us and it got confusing again. So, this is what I do know:
1. We have a name for what Zack has going on in his intestines. He’s had it for some time, maybe his whole life, now we just know what to call it.
2. It is rare.
3. People don’t really understand it.
4. It can cause pseudo-obstructions like Z had in the hospital.
5. It seems to respond to systemic steroids.
6. We have a doctor we feel extremely comfortable with and whom we know will do all he can to help our guy.
7. My brain could never handle being a doctor.
Zack’s doctor said that after we read the articles, we should send him our questions. I’ve decided that most of my questions are probably unanswerable. Except the part where I ask him to explain eosinophilic ganglionitis to me again, and then again, until my brain finally gets it.