Anthony saw the gastro nurse (really, as an ARNP, she's basically a really caring doctor with years of experience, not just your average nurse). She's been doing gastro work for a long time and seen a lot of kids with GI and liver problems (remember your "gut" isn't just the stomach or intestines, it also includes the liver, pancreas, esophagus, etc.).
For our first visit, we had to explain what was going on so far. After his diagnosis in January and following the low fructose/low-FODMAP diet for several months, we noticed his diarrhea had disappeared for a few weeks and he felt great. But then he started feeling awful again. He was having to pop anti-gas pills at night just to sleep. I was getting worried so started getting even more strict with his diet and eliminated all but the most basic stuff: Nothing but meat, rice milk, potatoes, rice, corn, and the occasional dark chocolate. I couldn't figure it out and he was missing school and his behavior was going downhill at school again. And he was having diarrhea again, even though he was eating the most basic stuff.
She checked him out, palpated his abdominal organs, determined he was incredibly constipated, and started him on a six-week regimen of stool-softeners and stimulant laxatives. Needless to say, this tidbit about my kid who I don't think has ever suffered from anything remotely resembling constipation was a shock. She explained that when folks get so constipated that their intestines can't really fill up with any more waste, the body just tries to push stuff out past it. So he had diarrhea on top of constipation. I can't imagine how sick he must have felt. Ugh.
We started the stool softeners and, within about three days, he was consistently having bowel movements and feeling better. After about a week, he was having too many, and, right around that time, Anthony's pediatrician called the house to ask how he was doing. (I don't think I've ever had a doc personally call to check up on anything, not in the last 20 years, at least. This was a pleasant surprise.) She indicated that we could cut back a little on the stool softeners, just to make sure he was getting everything out on a consistent basis, but not so much that he was having diarrhea again. That made me feel better.
We're basically at week 4 of 6 weeks. In general, he's had almost no gas or diarrhea, though today was an exception, as I forgot to give him stool softeners for a couple of days. Now I know he really needs them. Long term, the one that he's on doesn't appear to cause any sort of long term issues (old laxatives were such that when you used them all of the time, they'd cause rebound constipation, I guess?). But, until he learns to eat a lot more veggies and whole grains (not wheat, of course), he's going to have issues.
Luckily, he likes granola bars. There's a brand I buy that doesn't have any excess fructose, but it's expensive. So I started experimenting at home. I'll post some of the recipes on here soon. Oats are a really easy way to get fiber into your diet. Flaxseed and nuts are, too. Chocolate has some fiber, as well. It's going to be a learning curve for me and for him for as long as he's growing and not eating as well as he could.
One last interesting note about his gastro specialist. She said that she got into gastroenterology by working with kids with Crohn's, ulcerative colitis, and celiac disease. But one of the things she's noticed a lot more recently than when she first got into medicine, is how the incidence of something called fatty liver disease has exploded, mainly among poorer immigrant families that don't have access to healthy food at home. Families choose to eat at fast food joints and figure any calories are better than none, so their kids eat and drink a lot of poorer quality foods, especially soda, which has a ton of fructose in it (and, as I'm starting to figure out, basically causes high triglycerides, which is a major risk factor for fatty liver disease). Turns out most of our gastro nurse's patients are kids with fatty liver disease and diabetes, not kids like Anthony. It's a sobering note that if your kid is overweight or obese, and has a lot of weight around their abdominal region (apple shaped), they really shouldn't be drinking soda at all. Well, really, no one should drink soda...but that's my soapbox for another day.