Well, despite the fact I was told I wouldn’t get the results of A’s endoscopy for two weeks, I now have the results of A’s endoscopy. Got them on Thursday afternoon, as I was driving back from a quick 24 hour trip to Nebraska. The height of fun is getting a call from your son’s doctor on your cell phone while you’re zipping through northeast Colorado (which, if you’re not familiar, greatly resembles the surface of the moon. But less scenic. And with poorer cell phone coverage.). So I was trying to have a medical conversation, on a phone that kept cutting out, with two other people in the car.
You know, I’m just gonna cut to the chase here. I’m angry. I’m angry and I’m sad and Mama Bear has fucking had it. I’m starting to tear up again. Thankfully I’ve stuck the boys in their rooms for naps; A, according to him, was up at 2:22 am this morning and never went back to sleep. Seven years. Seven years I have somehow known that there is something about A that defied description. And so we’ve seen doctors and OTs and therapists and have spent untold hours and money trying to help him. And I feel like I am the one feeling my way through the dark. Tom is there with me, but I’m the one leading. No doctor has taken my hand and said, “Jen, I agree, there’s something going on and I’m going to help you. Follow me, we’ll do this together.” Instead, I’ve been flying blind, consulting Dr. Google and following one thing to another to another, trying to figure out what.the.hell. is up with my son. I’ve been referred from one doctor to the next, and all of them have been trying to treat the symptoms, not the cause. And that has been the whole problem.
A doesn’t have celiac, as I suspected. That’s cause for relief I suppose. But the endoscopy and biopsies indicated that he has eosinophilic esophagitis. Yeah, try saying that three times fast! From what I’ve been able to learn, it’s a food allergy in which the esophagus becomes irritated and swollen. And, in talking to the doctor while on the surface of the moon driving through northeast Colorado, I learned that there’s no cause. I learned that from him because I specifically asked what causes this. Right. It’s a food allergy reaction, kids. The whole point behind the endoscopy was to find the cause behind what’s causing the issues. And, instead, the doctor wants to just treat the symptoms. Again. He even said that the protocol used to be to do a skin allergy test, but we’ll just skip that and go straight to treatment. And I went along with it, because that’s what ya do.
And then last night I went to the birthday party of a very dear friend of mine. Our boys are all about the same age and temperament, so they get along….and she and I share a deep need appreciation of red wine. Another friend of ours was there as well and she and I got to talking. I mentioned in passing that A had had an endoscopy and there was something funky with his esophagus, and she rattled EE right off. Her son has it, but they caught it several months ago, when he was still a toddler. And she shared with me the name of her son’s doctor, who is a specialist in EE here in Denver. One of the best, she tells me. And his is a team approach: nutritionists, allergists, pediatric gastroenterologists, all working in tandem.
I consulted Dr. Google again this morning, reading everything I could about EE. A doesn’t have any of the overt symptoms, this was just caught because of the endoscopy/biopsies taken, looking for something else. And then this phrase jumped up and bit me in my memory banks:
Infants with EE don’t want to breastfeed or take a bottle, and may frequently spit up and arch the back, a sign of pain.
This.Was.A. And I had to hide from the boys and cry. I sobbed, apologizing to baby A, that I didn’t do enough to help him as an infant. That I allowed colic to be the answer, that I accepted that he was low on the growth chart, that I wasn’t insistent enough with doctors to get answers sooner. I sobbed, apologizing to myself of seven years ago, that it wasn’t me, it wasn’t that my body couldn’t nurse. And all the overwhelming emotions of having a newborn who wouldn’t nurse, who wouldn’t sleep, who cried inconsolably, came flooding back and drowned me.
First thing Monday I’m calling the EE specialist. I’m not going through with the prescription A’s gastro doctor gave him at this time. I’m doing something unusual for me: getting a second opinion. And we are going to treat the goddamned cause this time, not just the symptoms. If that means everyone in the house has to drop entire food groups, then so be it. If it means I have to close my business (because it’s home-based and involves food with common allergens), then so be it. I’m done. My poor son has suffered long enough. Long enough to not realize that it shouldn’t be this way. Mama Bear is going to cry some more this weekend, then put on her big girl panties and get over it.
And a note about privacy. When I first started this blog nearly 3 years ago, I began writing for the sense of community. And through blogging, I’ve met so many other women with challenging children. We support one another, cry with one another, cheer with one another. And I never would have known about them if I hadn’t shared my story, my son’s story. When you have a challenging child (and in my case, a challenging gifted child), you feel very very alone. Finding others in similar situations is soul-saving. This is why I’ve shared so much of my journey here. Somewhere there may be a mom at the end of her rope who consults Dr. Google and finds this post. And feels less alone. And has a new path to explore, one that may actually have an answer at the end of it. So while I do have my son’s privacy in mind, and will protect it with every bit of my being, I do know that extending a helping hand can do more for a mom than anything else.
That said, I should probably go call my mom and fill her in on all this before she reads it here and freaks out.