Our nephrology appointment went well. Everything looks pretty good.
I asked about adding a magnesium supplement (his mag is always low, plus he seems to have problems absorbing vit D, which can be complicated by low mag), and she said that technically yes, he does need a mag supplement, but that causes diarrhea so she’s hoping to avoid it if at all possible.
We discussed the dietary changes I’ve tried and the results. I feel like we talked about more, but there were no major issues. We’re slowly increasing his immune suppression again, since his viral levels have all remained “undetectable” for a few weeks now.
Then we saw GI. We actually had to call in Child Life because he was CRAZY PANTS by this point. She was a life saver!
First we talked to the resident or fellow we’ve been seeing. Then she went to talk to the “actual” doctor. Teddy and I were walking the halls during this time and noticed our nephrologist in there with them, too. She’s not happy with this, at all. And I appreciated her willingness to basically tell them that.
They basically went over everything again. They’ve been very thorough in checking for things they can check for. We should try: decreasing fruit (done it), limiting juice (done it), increasing fat (he’s sitting at 60% of calories from fat, I’m totally not giving him more fat), decreasing water (he’s at the bare minimum).
They view his diarrhea now as being different from his diarrhea when he was on Cellcept. I don’t, but ultimately, I also don’t think it really matters. Frankly, runny poop is runny poop as far as I’m concerned.
I told them that literally everything we try works – for a week, two at the most. I told them that my ultimate plan was, if something seems to work for 3 weeks in a row, then I’ll stop doing whatever that thing is and see if it gets worse again, and then re-start to see if it gets better. But nothing’s ever worked for three whole weeks.
I told them I really just don’t buy the Toddler Diarrhea thing. That I have a hard time believing this is REALLY “normal.” It’s not normal to have runny, watery, mushy poop 10 times a day every day. It’s just not. I’m sorry. It’s not. And have they really seriously ever seen a toddler with “Toddler Diarrhea” who poops 10-12 times a day every day? They danced around answering that one, but the “info sheet” they brought in (as though I haven’t been Googling this) does say “3-10 times a day.” Well… I don’t know. It also says that doing the above-listed items (no fruit or sugar, no juice, increase fat, decrease water) will help. They haven’t.
They just don’t see this as a problem.
Nephrology sees it as a problem because a) not normal. b) no weight gain. c) unstable prograf levels. (That puts his kidney at risk.)
GI then comes in and tells me that they think his weight gain is perfectly fine. He’s following his own curve. Um… if that curve is basically flat. He’s falling off the chart again. UNLESS you cover with your hand all of the lowest weight measurements, then he looks much better on the chart. Seriously. He covered up the low measurements, but not the high measurements. Um… I am not a doctor, but I actually do know statistics, and I know that you can’t just cover up the outliers on ONE SIDE. That doesn’t work. ALSO? It’s considered normal to have a bunch of weight gain after you finally get a working kidney. Teddy? Not so much. I wasn’t worried about the weight immediately after transplant. None of my kids have been big growers between 1 and 2. But they both grew a lot between 2 and 3. He’s getting taller, but he’s not gaining any weight. Now, maybe that is just his normal. Maybe he’s just behind a year and right now, he’s growing taller, and at 3 he’ll start to put on weight. I don’t know.
Then he tried to tell me to stop the probiotic. Not for any really good reason other than he doesn’t think they work. Oy.
And I basically said that it’s not that I’m WORRIED about the diarrhea (because they asked me how worried I was), but rather that I KNOW that it’s not normal, and I don’t know how he can have much of a normal life (or, being honest, how I can) if he’s pooping 10-12 times a day. I mean, we went to the playground with Genna for an hour and I changed three poopy diapers. Do you realize that means that either he stays in diapers until this stops (which could be FIVE YEARS OLD, if they’re right and it’s just “Toddler Diarrhea”), or he never ever goes anywhere where he’ll be further than a few feet from a toilet. How is that possibly going to work? I mean, really.
So we left it at, follow up in 2 months. And I said, I’m not going to “follow up in 2 months” for the next 3 years. Because seriously. What the hell is the point? Literally every appointment, we go over all the things they evidently suggest to every person with diarrhea, and I say we’ve already done that, and then they say to follow up in 2 months. I mean… waste of time. So, we’ll follow up in 2 months, and then at that appointment, I’ll tell them that if they don’t really have anything new to bring to the table, I don’t plan to see them again.
Also, the GI we’ve been seeing is graduating and moving on, so another GI is taking over, but this GI doesn’t do clinic on Thursdays. Which is when our nephrologist does clinic. WHAT genius thought THAT plan was going to work??
We added 2 new meds. Allergy med, to see if it helps his snoring/stuffiness and to see if it helps diarrhea. (And we have an appt with allergy later in the month.) And a reflux med to see if it helps with his random vomiting and coughing. He was on reflux meds his first year, and they didn’t stop the vomiting (but with the bad kidneys, I don’t think there was any stopping the vomiting) but they made a HUGE difference in his discomfort and in the arching, crying, retching. So… we’ll see. As it turns out, we have to get that one as a capsule and I have to dissolve it in his sodium bicarb, so I get to feel like a chemist every morning. It also makes our morning med routine a bit more complex. 8:15, mix the meds. 9:00 give meds.