The Daughter Chronicles

Monday, July 01, 2013

The continuing conundrum of Mia's health!

Every so often, I have to check in and write about Mia's weird health problems ... and that time is now!

I've mentioned that for some months, Mia has been vomiting quite often when we try to feed her, so we've been forced to cut back on the amount we feed her. Unfortunately, this means she doesn't get as many calories, which means she's lost weight. A year ago she was between 53-55 pounds and feeling pretty good. Now she's around 46-47 pounds and is exhausted very often. It's rather frustrating.

We've tried a lot of things, but nothing has worked, so we decided to try some other things! We went to a new doctor, and after he did his tests, he found out that her bone density was indeed low, so he said she needed to get off her anti-seizure medication and onto something else. He prescribed Lamictal, and we've begun slowly weaning her off the other stuff and getting her onto that (it can cause a skin rash, so they like to introduce it very slowly). He also sent us to an endocrinologist to check out her hormones. He said her growth hormone was low, but not abnormal. He was very concerned about her bone density, even expressing shock that she hadn't had any bone fractures yet. He took more blood to run more extensive tests on it, and discovered that her calcium levels were normal (of course, that's in her blood, so it doesn't tell us much about her bones) but her vitamin D level was a bit low. He gave her a prescription for a supplement - we give her one-quarter of a milliliter of that per day. That ain't a lot, but I guess it's good enough.

Unfortunately, he couldn't see anything in her hormone tests that would indicate why she's throwing up. Good to know! He did ask if Krys and I were scrawny when we were young, because it could just be genetic. I don't fully buy that - Krys was scrawny, but I was just a normal kid, and the fact that she vomits when she eats too much means, to me, that it's more than just that her genes are scrawny. I'm not a doctor, though, so I guess I'm just crazy. He did say that a lot of scrawny kids get bigger when they hit puberty, but we've been discussing suppressing puberty in her, that's a puzzle we'll have to work out. Sigh. So we were back to Square 1, or maybe Square 2 since we found out that Mia has osteoporosis and she'll probably have to start dressing like Samuel L. Jackson in that movie soon enough:

Yeah, that won't be pretty.

So we went back to her gastroenterologist to see what's what. She mentioned that there's an artery running near the duodenum in the intestine that supplies blood to the bowels. It's separated from the duodenum by fat, but if someone doesn't have enough fat (like a scrawny, 47-pound 10-year-old!), the artery could squeeze down on the duodenum, which doesn't allow the food to travel into the intestine. If that's the case, we can install a J-tube to bypass her stomach. It's a bit more of a pain in the butt than her G-tube, but such is life. So this morning we headed down to the hospital to get a GI scan, in which they put barium into her stomach (yay, barium!) to check out how the food moves through her stomach and intestine. Oh, the tension was thick in the air as they X-rayed her! And wouldn't you know it ... the artery is NOT squeezing off the duodenum. Her stomach still drains very slowly, but not because the space between the stomach and the duodenum is small. What does this mean? Well, it means we'll probably still have to install a J-tube, but while we could have done that at the hospital today if they had found something, we decided to put it off until the gastroenterologist gets the results and we can talk to her about it. It also means that I'm becoming more and more sure that her brain, for whatever reason, is telling her stomach to not allow her to grow. I've mentioned this to a few doctors, who have scoffed at the idea. That kind of pisses me off, because neurologists admit that they know very little about the brain, so why couldn't her brain not understand that she's ten years old and needs the nutrients? Why couldn't her brain believe she's five years old and doesn't need as much food? The brain is a freaky thing, after all, and it can do some pretty weird things.

So we're back to the drawing board a little bit. I'm still peeved at doctors who don't seem to care that they're stymied by Mia. Why haven't they recommended that they do a huge study on her, with the best minds in the country trying to figure her out? If what they say is true, she should be dead. Her bones are brittle, she doesn't get any nutrients, and her muscles don't work. Yet she hasn't broken any bones, she's never sick, and when she gets enough sleep, she's very alert. She's a medical mystery! I think she should be a case study. Maybe then someone will figure her out!

Until then, we'll keep trying to get food into her. Good times!