Logan had a follow-up with the pediatric sleep doctor this past Monday to re-check his iron levels. As I've written about so many times, we're still trying to solve the puzzle of Logan's sleep (or lack thereof). Its been three months since his last iron level check, and back then his levels had only gone up a couple of points. We switched him to an iron pill (instead of a liquid) in early January, to be sure he gets his full daily dose. We've also made some dietary changes for him, trying to get more and more iron into his body. We thought for sure his levels would be up by the end of February.
Turns out they were not. In fact, his ferritin level was back down to 19, which is where we began last August, over 7 months ago. Very frustrating, to say the least. I was pretty amazed it hadn't gone up one iota. Since its our understanding his PLMD won't improve, and therefore his sleep quality won't improve, until his ferritin is in the 80 - 100 range, we have to keep at this little medical mystery until we've solved it.
Sigh.
What causes iron mal-absorption? Well, we're not exactly sure. The first thing we're trying is to treat him for reflux. If he's had on-going reflux (which we see no signs of, but we're told it can exist in kids with no real obvious signs), that can cause iron to not be absorbed. He's now on an over-the-counter reflux medication and will have more blood drawn at the end of May for another iron level check. If it has not gone up then, we need to look into some other reasons. One reason could be Celiac Disease. I'm learning more and more, but again, there are no obvious outward signs he has this condition.
Just in case though, I contacted a good friend who works with an allergist at the end of last week and she is doing another allergy patch test on his back this weekend to see if anything flares up. The test isn't absolutely accurate, so it may or may not indicate a problem. We're testing for a reaction to milk, wheat, oats and corn in larger areas this time. The patches will come off tomorrow afternoon, and we'll see if anything looks obvious. Even if it doesn't, a next step might be to do just start a 4 - 6 week restricted diet for him, and we'll have to decide if we're going to remove all milk, or all gluten first. If we take one of those things out of his diet and see behavioral improvements and also see his iron levels going up by May, we'll know we're on the right track. I suspect there may be something going on with milk, because he's always had what seems to be an addiction to dairy. Removing dairy wouldn't be easy, as we've tried other types of milk (almond, soy, etc.) and he doesn't like them.
Gluten free might be more simple. Fortunately, we have a lot of friends who are gluten-free and there are lots of well stocked stores nearby with tons of options. I'll just have to educate myself on what to buy and what to substitute in for him to meet his little picky taste buds. I'm sure it will be quite an undertaking at first, if we go down this path, since some of his main staples are cereal, macaroni & cheese, oatmeal, yogurt, pizza, PB&J. But we'll figure it out.
Its just a never-ending science experiment for the poor guy, and I just sometimes wonder if we'll ever put all the puzzle pieces together to solve the behavior/iron mal-absorption/sleep disorder puzzle. We started on this road over four years ago and have come to a lot of dead ends, a lot of appointments, a lot of questions, answers and research. A lot of learning we have to be the ones to advocate for our son and stay on the doctors to give us answers. And what we've been through with Logan doesn't even slightly compare to what parents go through with children who are truly ill with more chronic conditions. That, I can't even imagine.
We'll return to the sleep doctor at the end of May, and see how things look. Chances are, she will schedule another sleep study for over the summer, just to see if his apnea is gone.
And we'll keep at this until we have some answers.
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