Sorry for the Aibu, never get any traffic otherwise!
DS got diagnosed with Mastocytosis when he was about 10 months old, he's now 3 years and 8 months. He's got about 60 of the brown spots and super sensitive skin, he blistered from warm food falling on his thumb recently, even though he'd just been eating it and the temperature was fine for that.
So his spots are quite temperamental, sometimes they'll blow up from the slightest touch and he'll get lots of hives and diarrhoea, other times it can take a lot for them to activate.
The last 2 weeks he's been miserable, (he's also autistic so doesn't communicate very well). He's been screaming at every little thing, everything is awful and he just keeps saying that he's sad.
About a week and a half ago he started disturbing in his sleep every 40 minutes to an hour. He'll wake up sobbing and tensing in what we think is stomach pain, then he'll drift back off again.
There's no temp, no vomiting, no diarrhoea etc. Through the day he doesn't seem as bad during the day but if naps he's still waking in pain after 40 mins or so, it's like he only notices it when he's not on the go and doing something.
We were told when he was diagnosed that there was a chance it could cause stomach issues and there could be excess mast cells in his stomach.
We actually got told to take him to the GP today and he wants us to go get blood tests to check his mast cell levels as it's been over a year since he's had them checked.
I'm just so worried it could be something horrible and he's going to need a lot of medication, he's clearly in pain and we need to rule this out before looking at anything else. I'm just wondering if anyone has any experience? It's quite a rare condition so not easily google-able!
Thank you