I called our Allergist’s office and left a message for his nurses letting them know the Nexium still wasn’t helping Maya. Later that evening I received a call from our Allergist himself! He told me I needed to get Maya to a pediatric GI doctor as soon as possible. He said it was very likely that we were dealing with eosoniphilic esophagitus (which will now be EoE for our purposes).
That was in May 2010.
With that recommendation in hand, I started the arduous process to get our referral from our pediatrician sent and our initial appointment with GI set up. I was finally able to speak with GI in June and the earliest available appointment was in October. October 6th actually.
The summer passed by.
I was anticipating the arrival of fall not only to give relief from the incredibly hot summer we’d been through, but also to start our countdown to October 6th. We finally made it to the day, made our first of several two hour long drives and got to the GI clinic. Everybody was lovely and we got in rather quickly. Our Nurse Practitioner had lots of questions, naturally, and I basically had to rehash about 6 years worth of medical history and pray that I remembered everything accurately. We talked about all the potential issues Maya could be experiencing and the possibility of EoE. After a lengthy talk, she put in an order for an Upper Endoscopy with biopsy to check for damage in Maya’s esophagus and for the presence of any allergic cells. She was doubtful, but wanted to make sure anyway. Maya has asthma, so we needed her Pulmonologist to sign off on the procedure before we could put her under anesthesia. Her Pulmonologist was also her Allergist. They faxed off the form they needed him to sign before we stepped out of the clinic.
I went home and did some research. After hours of research I was pretty sure we were dealing with EoE. Maya was like a poster child for the disease.
Just a week later, Maya was scheduled for her yearly skin test with our Allergist to see if she had outgrown anything.
The results were crushing to say the least.
Skin tests are painful and my poor baby had to have many pricks on her back only to show that we hadn’t lost any allergies, but had gained five. It took everything I had to hold it together in that office because I had been earnestly looking forward to gaining back a new food. Maya was five, that’s when a lot of kiddos outgrow their allergies, right? The time leading up to October 12 I had spent anticipating the outgrowth of food allergies. I had just been waiting for that day, just getting through until the day she outgrew her allergies. That day opened my eyes to the fact that we were dealing with potentially life long, life threatening food allergies. That hurt. I can’t explain to you how badly it hurt. I grieved. It was like experiencing the food allergy diagnosis all over again but with an understanding that hadn’t been there before. Maya still had to avoid dairy, chicken, egg, and pea and we had to add soy, corn, onion, orange and tomato to the list of foods to avoid. I don’t know how many of you know how difficult it is to avoid either soy or corn, but to avoid them both is a massive undertaking. Having to avoid dairy, soy and corn shut down a lot of options for Maya. Plus, our budget was really tight. I was used to the tight budget, but with more specialty food thrown in on top of that, boy was that tough. Not only did I have to manage obtaining safe food, I had to feed four other humans, three of them male. The stress was incredible.
A week and a half after our initial GI appointment, I called their office to see where we were in the Upper Endoscopy scheduling. I desperately wanted to get things taken care of before we launched into the holiday season, namely Thanksgiving and her birthday. They told me I needed to talk to Radiology as they were the ones in charge of scheduling procedures like that and transferred me over. Radiology told me I needed to talk to the GI clinic because they didn’t even have the order yet and transferred me back to the GI clinic. That was a very long afternoon, as I had to leave messages for each department and wait for them to call me back. I finally got to the point where someone in GI told me to leave a message for our Nurse Practitioner’s Nurse, so I did. She was able to call me back the next day to inform me that everything was ready to go; they just needed the form they’d sent to the Pulmonologist when we were last there. By this time it had been at least two weeks since the GI clinic had faxed that form to the Pulmonologist. To say the least, I was livid.
To be continued….