Wednesday, July 20, 2011

Nagging worry

I despise the nagging feeling I have had since late winter. I try to block it out, to put it off to an overreacting momma. But yesterday's routine check-up with the boys' GI doctor brought out the demons again, the worry, the waiting, the what-ifs. Both boys have celiac disease. Skipper was diagnosed first in the fall of '09 at 4 1/2 years old. Shortly after, Critter was diagnosed. We rolled with the flow and felt very lucky that this was all we were dealing with as the year prior had brought fear and uncertainty where Skipper was concerned. We had even had a moment where we thought he might have cancer (an entirely different story but one that brought out his then-unknown celiac symptoms more). Plus, at the time of his diagnosis, I had already cut out soy and dairy from my diet because of Miss Bear's reactions to my breastmilk. So taking out gluten was not too big a deal (in some ways, yes, but overall, not so tragic as some have felt). The boys' responded very quickly to the diet and finally, finally, my boys' were coming back to me, were growing, and were healthy. All seemed well.

Until sometime this past winter. I cannot pinpoint exactly when I felt the first nibble of worry. We had passed through most of the winter without getting sick (unbelievable!) though the boys were looking a little peakish - no doubt from lack of sun! Then, we were hit with the flu. And nasty it was - well, for Skipper and I anyway. Of the kids, Skipper was hit the hardest and he seemed to take the longest to recover. I would check him at night and grew a bit concerned that he was sweating bucket loads. Not the "he's hot" sweat but nasty, drenching sweat that is not typical of him at all. I brushed it off to his immune system getting over the flu. He was also more tired and "lazy." Again, recovering from the flu. But then, he started peeing out of his pull-up (yes, he's 6 but pees a bunch at night still though he had been starting to "dry" up some). That sent off a big trigger of worry. It only happened a few times before I had Skipper in to his doctor for his six-year check-up. I brought it up to him and he definitely thinks something is going on with Skipper's immune system, based not just on vague symptoms but on his health history of weirdness. He also brought up type 1 diabetes. Said he may or may not be developing it but I should know the signs as it can get serious fast.

Well, imagine my relief once the sweats were gone, he started peeing less and perked up more. I could have danced a jig. I no longer had to worry. It was just a fluke. Until he caught a cold in May. And the same thing happened. The worry bubble grew a bit. I did not call his pediatrician. Truthfully, I wanted it to all go away. I want Skipper to be healthy; I do not want him dealing with anything more than he already has. Nice. Denial. Wonderful place to be in. But again the symptoms went away, and much more quickly this time around. Whew.

Guess what? Skipper ran a fever last week - low-grade, just for a day. And now he has a cough. He looks peakish, not as much energy, is very moody, and has leaked out at least once that I know of (this is not always easy to tell how often he does this). When I had him and Critter in to their 6-month GI check-up yesterday, I told the doctor what had been going on since I believe all his doctors should know, regardless if it directly relates to what they see us for or not. Know what he said? Could be the start of type 1 diabetes (it can take years for the body to attack the pancreas enough to shut down insulin production) and that he's symptomatic when sick. Now, the next time Skipper is sick I am to take him into his pediatrician to have his urine checked for glucose. And, now the worry bubble is that much larger.

I do not want this for my son. I do not want this for me. Who does? But as I told his doctor (regarding celiac), it could be so much worse. For that, I am thankful.

**Edit: Skipper will be seeing an endocrinologist in August but for a totally different reason. A routine bone scan showed some abnormalities and so we go to the endo to see how to fix that. I had thought it was due to undiagnosed celiac but now his GI doc is telling me he's not convinced it is a result of undiagnosed celiac. The reason? Of the small handful of his celiac patients who have an abnormal scan, all of them have growth issues. Not so with my son who has always been at the top of the charts (if not off) in height. So what gives? What else would cause low bone density? I guess we will find out.

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