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Tuesday, October 15, 2013

Waiting for a Diagnosis

To say there has been a lot going on is an understatement. Over the past six weeks, I've spent more time in doctor's offices and on the phone with the insurance company and pharmacy than I'd care to admit. What's going on? Too much. Like, I can't even make this stuff up.

If you recall/have been reading that long, you know that Charlie is prone to get sick with, well, just about everything. He's had RSV, croup, bronchitis, pneumonia, hand food and mouth, Roseola, pink eye, and countless ear infections and colds. After one too many antibiotics he came down with something different - clostridium difficile (c. diff). Remember way back in high school health class - our bodies have naturally occurring bacteria that protect our gut and make everything run smoothly. When that bacteria is destroyed, it leaves room for bad bacteria to grow. In comes the c. diff bug.

All summer, Charlie was having stomach issues, to put it simply. Explosive ones. For weeks, multiple times a day. It was impossible to potty train him when he had no control over his bowels. We took him to the pediatrician several times and they claimed it must be his diet or "just how he was," but I couldn't be satisfied with that. He was miserable. He started eating less, sleeping poorly, and wasn't his normal playful self. A referral to a pediatric gastroenterologist and we had a diagnosis.

It's been two months and two rounds of special antibiotics given 4 times a day and its still lingering. We've moved onto a third try of antibiotics and a new referral to a pediatric infectious disease specialist, who we see next week. The good news is that while he's on the antibiotics, he's my happy boy again. I'm not sure what the ID specialist will say or even what he could recommend, but I'm hoping whatever it is, it works.

Then, there's Ginny. Have I mentioned that I can't make this stuff up? At her 3 month appointment, the doctor noticed something strange while doing a physical exam and recommended we see a pediatric endocrinologist. Blood tests revealed wonky (for lack of a better term) hormone levels that couldn't be explained.

Here's another health class lesson - your pituitary gland, located in your head, is the command center for hormones released by your adrenal glands, located above your kidneys. Your pituitary releases something called ACTH which triggers your adrenal glands to respond by producing cortisol - the stress hormone. One hormone called 17 OHP is created by the adrenal glands and is converted into cortisol. Ginny's tests came back that she had an excess of 17 OHP, but a normal level of cortisol. Typically, if you have an excess of 17 OHP its because it is not being converted and you therefore have a low cortisol level. What does that mean? We're not sure. The prognosis could range from absolutely nothing to concerning. She had a controlled adrenal stimulation test conducted last week and we will get the results back in about a month.

While we're waiting for all the various test results to come back, we're sitting and waiting (and trying not to Google). I think I've done a pretty good job of keeping calm, but I can't help but worry about them both. All I can really do is thank God that we have good insurance and that we're so close to good medical specialists. I think I've unconsciously left no time for me to sit and think recently, keeping busy with 100 other things around the house, leaving little time for hobbies and blogging.

So, here I am back on the blog-wagon. I have been keeping a list of topics I want to post about like our Disney trip, our updated cloth diaper stash, some new projects we're working on, and of course updating about the kids. Here goes.

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