Day 3 of NHBPM asks about a conversation with the doctor. It's a topic I've been considering writing about for a couple of months now, but haven't. Why am I avoiding it? Fear.
Rewind to spring of 2011. Dylan had been experiencing some edema (swelling/water retention) in his face, hands, and feet, and I was a bit worried about what was causing it. From what I could find, there didn't seem to be any correlation between diabetes and edema (though if I'm wrong, please let me know), so we asked our GP about it. Our GP (family doctor) thought maybe Dylan had developed an allergy, so he referred us to the allergy clinic at Children's Hospital (where we were added to the bottom of a 18 month waiting list). He didn't seem concerned, so I decided to let it go and wait for the clinic appointment.
At our next quarterly DEC (diabetes education centre) appointment, I mentioned the edema to our endocrinologist. She agreed with the GP.
Fast forward to August 2012. We finally received our appointment at Children's Hospital for the 28th. After a full medical exam and history, followed by a series of scratch tests for animal, plant, and environmental allergens, the allergist had no idea what Dylan was allergic to, if anything. He had no reaction to any of the scratch tests, and because the edema was constant, the doctor ruled out a food allergy. He gave us lab forms for celiac testing and Angioedema and sent us on our way. A 2 hour waste of time in my opinion, but at least we were one step closer to figuring out what WASN'T causing Dylan's inflammation.
A week later (early Sept 2012) we were back at the DEC for a check-up and this time it was anything BUT ordinary. After doing the routine weighing and measuring, evaluation of pump data, and quarterly A1c test, we sat down with the endocrinologist. As soon as she looked at Dylan I knew something was wrong. She was surprised he was still suffering from such severe edema. She had copies of the reports from both the GP and allergist, but had assumed the swelling had decreased since she had last seen him. She was noticeably worried.
There are not a lot of things that cause edema in the extremities in children and we had already eliminated the less severe causes. Her first suspicion was kidney failure, or a thyroid problem, so she ordered more lab work. At the top of the lab forms she wrote a message to the lab technicians asking to rush the tests and call her immediately with the results. She then told us to go straight to the hospital. Do not pass go, do not collect $200. Now I was panicking.
We live a block from a hospital, so we the lab work and went home. 2 hours after leaving the DEC clinic, I got a text from the endo stating that all the test results were normal. Dylan's thyroid and kidneys were functioning perfectly and all of the other bloodworm was also normal.
A wave of relief flooded over me, but again, it was temporary. We still didn't know what was wrong. The endo suggested Dylan go for an echocardiogram to make sure the swelling was not a result of a heart defect. Wtf? Are you eff'ing kidding me? Could this possibly get any more frightening?
I was told to wait for Children's Hospital to call me with an appointment time.
Fast forward again, to last week, when we finally got a date for the echo. It's this coming Thursday. I'm emotionally torn, to say the least. My fingers are crossed that the echo reveals everything with his heart is normal, but a part of me is thinking, what else could it be?