Today, Gavin is 4 and so close to becoming five but as I think back to the beginning, I knew...I knew that there was something going on and it scared the living daylights out of me! Gavin was born on April 13, 2010, full term. However starting on March 17th we began to have questions. His heart rate was jumping and at times would just disappear. If I would lie still and he would be calm, he was fine but activity caused a decrease in vitals. On April 13th, I was induced due to gestational diabetes (the only pregnancy of three that I had it btw). We were about to deliver and he wouldn't drop. His heart rate kept disappearing and the next thing I knew I was signing papers, drinking something, and being rushed to the OR by myself, scared to death.. The last thing I remember was the doctor yelling, where the hell is the anesthesiologist. Nothing like stress to start off your life! I woke up who knows how long after and the room was empty except for the nurse sitting on the gurney next to me. You won't believe it, she said, "he is perfect!" She was right, I never believed it...he came into the world with the cord wrapped around the top of his head so every time he would become active and push his head into my body, he would cut off his circulation. I don't know if this affected anything, but it left me with this gut instinct that there were long term effects that would eventually surface.
Honestly, he was a good baby. I don't ever remember him being overly fussy. Just that he vomited...a lot. We used to call him the "mad puker." However whenever we talked to the doctors, we refused medical intervention because he did not seem uncomfortable. We started noticing early on that lots of activity would almost immediately induce cold-like symptoms. Within an hour of leaving a play place of some sort, he was sneezing, snotting, and tugging at his ears. I guess we thought it was coincidence at first. He had tubes put in his ears at age two. We tested him for allergies and his IgE was crazy high and the bloodwork should up positive for all food allergies except cod. I went into panic. We took him in for the scratch test and the foods presented as negative. The allergist literally wrote it off as a fluke. The tubes did wonders but eventually grew out. I continued to see his doctor with concern of something, but never able to really identify it other than he puked a lot and would go right on his way like nothing ever happened. However, once he turned 4, he stopped gaining weight and I started to push. After many many appointments of people telling me it was likely reflux and he would grow out of it, I said that's not enough. We made an appointment with a GI specialist. However right before that i took him to a natural wellness center and her testing indicated parasites. hmmm, i thought. I guess that was possible. I waited to treat since we were going to the GI and figured I could test it first. Blood work, stool samples, upper GI barium x-ray and everything came back negative. The only thing elevated were his IgE levels. So they referred us to the allergist at the Childrens Hospital in Pittsburgh. The earliest appointment was about a 3 month wait.
In the meantime, he got sick...again. His eye blew up like he had been in a boxing ring and i took him to our PCP. He treated it as an allergic reaction and he thought he had polyps in his nose so he prescribed flonase. Over the course of the next two weeks, what I thought was one polyp turned into two. Enough being enough, I called an ENT at Childrens in Pittsburgh and they got us right in. That day he reviewed his history, completed some scans and scheduled him for surgery. He was to have his adenoids removed and while he was under he was going to do a scope of nasal passage for polyps and another of his esophagus to complete the follow up for reflux. He was already taking previcid and still vomiting. Gavin immediately is sleeping better. Less snoring, better breathing, but still puking. We go for the follow up and the doctor said that his biopsy tested positive for eosinophilic esophagitis and I need to follow up with the GI. He gave me a super brief description, made it sound so simple and left the room. I sat there waiting for the discharge papers thinking WHAT??? I had to ask the nurse to write it down on the papers since I could ever regurgitate what he said. Then we drove 2 hours back home to wait for the allergist appt and the GI follow up.
I guess I thought having this name written down on the paper was going to make it easier but the truth is, I had never heard of EoE. So I did what anyone my generation does when we don't know something and I googled...and I googled...and I googled!
Holy smokes, this was nothing like I thought! As I read about how the eosinophils attack food like a parasite, I immediately thought back to that wellness appointment. She was totally onto something and I am planning to go back to that avenue soon. But the more information I read, the more I started to panic. This was a no joke diagnosis with no definitive direction. I turned to facebook, I turned to parents of other EoE kids and I learned. I did nothing for days but researching and asking questions. I didn't have a doctors appointment for over two months but I wasn't waiting for answers, i was going to make them. So, this is how the journey started. A kid that puked A LOT, got sick frequently, had high IgE's, and showed like he was allergic to everything but in turn, tested negative to every allergen. Crazy right!?! I think so, but I was happy for a name to it and ready to individualize the treatment to Gavin and get him better.
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