How do you even know when a stomachache is a Crohn's symptom vs just a regular kid stomachache
My son is 5 and was diagnosed about eight months ago. The GI team has been great but I feel like every single time he grabs his belly and says ow, my whole nervous system goes haywire. Is this a flare. Is this the pizza from lunch. Is this nothing. Is this something. Like today he complained after dinner for maybe twenty minutes and then just. went and played with his blocks. So probably nothing. But I stood in the kitchen doing the math on everything he ate today like some kind of deranged food accountant. I asked his doctor about this at the last visit and she said to watch for patterns, which I know is the right answer, I do. But in the moment when he is holding his belly it does not feel like a patterns moment, it feels like a panic moment. Does this get any easier to read. Do you ever actually get good at telling the difference. Or is this just the new permanent state of my brain.
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Okan here, dad of a 10 year old who's had Crohn's for almost four years now. And yes, it does get a little easier to read, but I want to be honest, it never fully goes away. You just get better at the specific signals that are YOUR kid's signals, and that takes time and a lot of exactly what you described, the food accounting, the watching, the mental note-taking. For us the difference started showing up in duration and behavior. When my son has a real flare symptom he gets quiet and still in a certain way. When it's just a regular stomach moment he's annoyed and loud about it and then moves on, exactly like yours did tonight. Eight months in is still really early. You're still learning him in this new context. That is so hard and it's also exactly what's supposed to be happening right now.
The quiet and still thing, that actually helps me. Because when my son is really hurting he goes quiet too. When it's minor he makes a big production of it and then forgets about it in five minutes. I hadn't thought about it that way but you're right, that IS a different signal. I'm going to start paying attention to that specifically.
No advice, just wanted to say I felt this in my chest. My daughter is 4 and doesn't have Crohn's but she has gut stuff going on and I do the exact same deranged food accountant thing every single night. Solidarity.
Yes, exactly that. And write it down when you notice it, even just a note in your phone. When we finally had a longer appointment to go over patterns, having those little logged observations was genuinely useful for the team. They can't see what happens at 7pm on a Tuesday, but you can tell them.
Can I ask a slightly related thing, because this thread is making me think. How do you handle it when your kid starts using stomach pain to avoid things, like eating something they don't want. My 4 year old has figured out that saying her tummy hurts gets a reaction from me and I honestly cannot always tell if it's real or strategic. I feel awful even typing that.
Oh I feel that. We went through a phase of this around age 4 before the diagnosis when everything was still a mystery. I have no idea how to tell you to untangle it, I'm sorry. I just wanted to say you're not awful for noticing it. You're just paying attention.
We had this too and it is really hard to navigate. What helped us was bringing it up with the GI team directly, because they actually have good strategies for this and it also ruled out that the complaints were always real. Turns out about half and half in our case. Your instinct to take it seriously is the right one, just mention it at the next appointment so you have some backup.
Update: he slept totally fine, woke up this morning and immediately asked for toast, so I think last night was genuinely just dinner not sitting right. My nervous system has been informed and is still not satisfied. Seriously though, this thread helped more than I expected. The logging tip especially, I downloaded a basic notes app widget on my phone so it's one tap from the home screen. And the behavior difference thing. I feel like I have two actual things to do now instead of just standing in the kitchen vibrating with anxiety. Thank you all.
Toast and a good night's sleep, that's a win. And the vibrating with anxiety in the kitchen is so real, been there many times. It does slowly shift into something more like watchful calm. Takes a while but it happens.
Just came back to this thread this morning. Glad your little one is okay. And what someone said above about bringing the real-or-strategic question to the care team, I'm going to do that at our next appointment. Never thought to just say it out loud to the doctor like that.