Thursday, June 28, 2012

How Did We Get Here? June's Story, Part II (By Whitney)

Part II: Spring/Summer of 2010

June was about 10 or 11 months old when, one morning while changing her diaper, I noticed that her tummy seemed darker. I didn't really think anything of it. My mom has a darker skin tone, so I thought she could be taking after her. (Tony and I are fair). Towards the end of April, her legs were starting to get dark. Pittsburgh in April is still pretty cool, so I knew this was not from the sun. Getting into May, her legs were getting darker, tummy still a little dark, and her arms were now getting dark. Everywhere we went, and I mean e.v.e.r.y.w.h.e.r.e I would hear either, "Wow, she is so tan!" or "I guess you were just at the beach!" I am not exaggerating when I tell you that I probably heard this at least three times a day. I was close to making a t-shirt stating, "She is NOT tan!" and save myself the explanation.

As we got into the month of June, June's legs were even darker. As she sat in my lap in her onesie, her legs against mine, I just stared in complete awe of her skin tone. People had asked me if we spent a lot of time in the sun, or if the sun was hitting her legs while in the stroller. I think what they really wanted to say was, "don't you put sunscreen on your baby?" (One person asked me if she was eating a lot of carrots!)

In July was June's check-up with her pediatrician. I always go in with a list of questions, no matter how silly they seem. My mom kept asking me whether or not I was going to mention her skin at the appointment. I mean, yes I was going to, but I felt kind of silly doing so. Afterall, it was July 1, and we had just gotten home from a week in Phoenix. This doctor is going to look at me like I have two heads!

During the Q&A session of the appointment, I sheepishly asked, "Ok, her skin tone. She is really dark. Could I be missing something, or is this just her skin tone?" June's pediatrician did not look at me like I had two heads. Instead, he scribbled something down, told me not to Google it, and sent us to a pediatric dermatologist.

HA! Of course I Googled it! He had scribbled, "Addison's Disease." I skimmed the first article that I found, read the symptoms, and then saw that it could be fatal. I closed the page immediately and walked away saying, "He was right." But I did read those symptoms: nausea, weakness, fatigue, weight loss....June didn't have any of those. So she didn't have Addison's.

The dermatologist agreed with our pediatrician. She said that her skin was "definitely not normal." In fact, 5 other dermatologists from around the office came in to see June, and one asked to take pictures! They ordered bloodwork, and also made an appointment for us to see a pediatric endocrinologist in a couple weeks.

After two weeks we still had not heard the results. I was going to call on a Friday afternoon but we got caught up in a playdate, and I thought, "if it was bad, we would have heard by now." So I decided to call the following Monday. Well, I didn't get to make that call, and in the next section you will know why. (Side note: the dermatologist never got June's bloodwork from the lab, which not only infuriated the doctor for such a mistake, but also Tony and myself)

Lesson learned-call your doctor if you are waiting for results!

Three days before diagnosis.

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