After a late-night return from Atlantic City, last Monday morning was predictably rough. We were tired and both boys were not thrilled about school for various reasons. In fact, Jacob ended up staying home because he was dead tired. Carter got himself up and out, but it was a struggle, especially because he had his first day of swimming in P.E. and was not excited about it. I had a ton of work to do myself and made sure to caffeinate so I could be functional. It wasn't easy, but I managed. My whole week was pretty crazy, because our Day of Giving was Thursday and I had to work multiple late nights leading up to it just to get things done. That didn't leave a heck of a lot of time for much else.
Because Carter's digestive issues were pretty annoying over the weekend, I decided it was definitely time to move forward with more testing. His doctor wanted to wait until the end of the month to give the iron time to kick in, and now it was time. He had repeat bloodwork and they also wanted to do some stool testing. I wasn't sure how that would go, just that I had to pick up the cup at a lab ahead. I went to pick it up on Monday and hopefully get some advice on how to do this. We did it when he got home from school on Tuesday, and all things considered it wasn't that bad. Probably because I can't smell, but thankfully that one was more soft than liquid. We could have refrigerated it and gone another time, but everyone vetoed putting poop in our fridge, so we opted to just go right there afterward and get everything done at once. Results started coming in that night, and as I suspected, they weren't any better. Still lots of inflammation markers, and some of his levels, including iron and calcium, were still low despite supplementing iron. One of the stool tests also showed evidence of inflammation, and the next day one confirmed there was blood in the stool. Obviously that's a concerning thing, but lots of things could cause it. We had to wait a couple days for the rest of the results, but all of the bacterial/parasite stuff came back negative. A couple more trickled in over the weekend. Those were both fine--namely the percentage of fat in his poop indicated he wasn't having fat malabsorption. However, Monday morning another one came in and that one was downright scary. His calprotectin level was beyond high. Borderline is 150-200 and his was over 2,000. That's another inflammation marker, namely one that distinguishes IBD from IBS. So, at this point that pretty much narrows it down to IBD--Ulcerative Colitis or Crohn's--cancer (yikes), or I think there's still a chance that it could be SIBO or some other bacteria they didn't test for. I'm not sure if this is officially too much inflammation for a simple intolerance at this point, but it's concerning.
Unfortunately the GI couldn't get him in for another three weeks. On Friday I called to get on a cancellation list, but once I got this result I called the pediatrician to see if they or I should call again because this result seemingly indicates a more urgent need. He clearly has a lot of inflammation for some reason, and it's worrying because he's essentially being malnourished right now and has bleeding happening somewhere (hence the blood in the stool and low iron), so he's a little more fatigued and looks a bit pale to me as well. Fortunately he hasn't lost much weight. Unfortunately, there isn't much we can do in the meantime until the appointment aside from trying a gluten-free or low FODMAP diet, which is not ideal considering how I already struggle with feeding our family. I'm just so sad for him, and I think now he's definitely in line for a colonoscopy, which stinks. I never thought I'd be setting my kid up for one while I was doing my prep, that's for sure. It appears they'll let him do the Gatorade-Miralax-Dulcolax version of prep, which is a relief because he'd never make it through the one I did without puking.
Oddly, he and I were both feeling better over the weekend. He happened to wrap up his month-long probiotic on Friday, but that couldn't have changed something...or could it? I originally attributed mine to medicating myself on Thursday for my long work day, but the last time I did that, symptoms resumed within a couple days, and by Monday I was still fine. Although, getting that last test result seemed to get the nervous poop machine back up and running a bit, and I then I tried a prebiotic soda last night, which I swear made things worse last time, and today I've been more off again. Even still, the rumbling and forcefulness is dramatically reduced from what it once was. But Carter being better is intriguing since his has clearly been so severe. I keep hoping that means it's something that would go away anyway (like he and I having some sort of finite infection), but more than likely it's more along the lines of a Crohn's or IBD flare that has died down. Any of that is obviously a better scenario than say, cancer, which I would think would just continue to get worse. That his got better after the probiotics ended actually lends credence to the SIBO theory because probiotics can make SIBO worse.
I did do some random Googling in my insomnia the other night despite my usually effective sleep drugs. The anxiety hit bad because right before bed Carter showed us a little nodule in his mouth. It was a little bulb of gum tissue coming up next to one of his new 12-year molars. I'm hoping it's just inflammation from the eruption, but of course everything has me on edge. As I was Googling, I came across something called Juvenile Polyposis Syndrome, which is a condition that causes intestinal polyps, even in young people (although the "juvenile" in the name is about the smaller state of the polyps rather than the age of the sufferer). The symptoms matched up well and it made me wonder because Craig had a lot of polyps during his colonoscopy last year. So there could be a genetic component there, I suppose. I hope it's not that, because it carries a cancer risk, but at this point most of the things he could have carry a risk as well, just because the tissue is so tortured by the inflammation. So, he may have a lot of colonoscopies in his future, sadly. But if it keeps him healthy, it's worth it. But I still think it would be better if we found out it was some bacteria they didn't test for that is finally working its way through and all of this will resolve on it's own, or I'd even take the SIBO, which is pretty treatable. Wishful thinking, I suppose, but I'm just sad and worried and hopeful we can figure this out quickly and easily. And, more than likely I'll be calling the dentist as well this week to double check that mouth thing.
The Crohn's possibility is scary to me because I've known two people with it--my high school boyfriend and our pastor--and I know both have had scary run-ins with it, including extended hospital stays. They both live otherwise good, functional lives, by all accounts, but my boyfriend's high school years were challenging. He was healthy when we were together, thankfully, but I know the toll it took on his body--weight loss leading to steroids that made him oddly chubby for a bit, lots of missed school, and I assume his shorter stature probably had some basis in the nutritional deficiencies he'd suffered all along. I sort of can't imagine where it would have come from in Carter's case, but I guess with Craig's polyps and Jacob's autoimmune diagnosis (and whatever has been up with me lately), there's plenty of potential for genes to take a wrong turn. If there is a diagnosis with a genetic component, it makes me think Craig should probably dig a bit deeper into his blood work and meet again with the GI to ensure he's not missing something that should get more care. I can probably chat with her when I go in for myself later this month to get an idea of what she'd recommend.
So, needless to say, Monday became a rescue klonopin day. I could barely focus on work until that took effect. Ugh.
Thankfully, we had a pretty decent weekend before that. I got out a little early on Friday after my long day Thursday, took a long walk on a perfect day, and then came back and fast-tracked a bunch of outside stuff that needed doing while the weather was decent. Weeds were starting to take over so I dug up a bunch of the worst invasive ones in my front flower bed, did some weed whacking that was much needed after the first couple mowings of the year, and then remembered to put some dirt in a tray for my garden seedlings, to give them an extra three weeks before planting. I also trimmed up my hydrangea, which has somehow mostly survived another round of cold. It felt so good to do some catch-up, though I have a long way to go once the weather improves more consistently.
I then came in and tried to clean up my house since Heather was arriving on Saturday. She was in town for a librarian conference, highlighted by meeting Ann M. Martin, the author of The Baby-Sitters Club books that we read religiously for years. She also got to hear Mychal Threets, the super cool internet-famous librarian, speak. Unfortunately my long work day on Thursday and a tricky schedule Friday prevented us from getting together earlier, but she came to our house early in the afternoon on Saturday and stayed until after lunch Sunday. Unfortunately the weather decided to go into the tank (extra cold and rainy) the entire time, so anything fun like a walk around Highland Park or the Memorial Art Gallery sculpture park didn't work out, and the blocks of time weren't really ideal for any indoor things I could think up. But we always do our fair share of talking and could do that just fine from the couch! It was great seeing her and getting updates on my amazing godson, who I need to go visit very soon!
I rested for most of the rest of Sunday. I think a couple rough nights of sleep, a busy week of work, and busying myself with a lot stuff around the house finally caught up to me once the adrenaline rush subsided. I wish I could have been a bit more productive with my free time, but sometimes you just have to let it go.
So, after a rough anxiety day yesterday, today ended up being sort of weird, too. Both boys were home. Carter has a cold now (negative for all the things at this point), and Jacob needed a bit of a resting/mental health day. I think he's a little stressed out about things (namely, school, his brother, basketball, his own body), so he's struggling to fall asleep. His anxiety med appointment is tomorrow, so we'll see how that goes. I had a long chat with a GI doctor this afternoon, going over Carter's symptoms and his progression. He's relieved to hear that Carter is mostly doing well. With his hemoglobin as low as it is, he's not far off from recommending an ER visit if things get any worse. He definitely thinks it could be some sort of IBD, and confirmed that sometimes a bacterial infection can even start that autoimmune process. The question right now is whether we get an additional procedure or any extra blood work done in the meantime, before his appointment. I think I want to wait the week out and see if his issues come back. If they do, then I think it's a definite yes. If they don't, then maybe we just keep an eye out and see where the GI wants to take this. It was helpful to get a call from an actual doctor, but also...it's not the best feeling to know your kid is sick enough to warrant that. I'm encouraged that he's been a bit better, but I also know this is likely to be a long road. I am feeling a little sorry for myself in hitting the reverse-jackpot of two kids with GI issues, but I guess it could be worse--the doctor was not particularly worried about it being cancer or even a polyp issue, so I guess that's reassuring. But still...when is this dark cloud going to clear?
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