DS had his 6 month GI appt today. I have a better understanding of the Remicade dosing and why he was only getting 200mL. At our clinic it is based on weight the day of the infusion and we looked back at the numbers and he was always just shy of 50 kilos (which would round up to 300mL) with lots of hovering at 49 kilos, hence the rounding down to 200mL. It didn't help that he hasn't gained any weight to push him over the little bit he needed weight wise. A catch-22 of sorts. So, our current plan of 7.5 every six weeks (400mL) should take care of things.
The Solumedrol should also help and his GI said there are no long term health risks with the low dose he's getting, which eased my mind. We also talked about adding methotrexate or 6MP, but his GI thinks that's still a long way off. I forgot to ask if his intermediate TPMT would affect this decision at all. Does anyone know? The intent is to lower the immune response, but with an intermediate TPMT...?
Growth has tapered off a bit and we briefly talked about growth hormone therapy, but DS has no interest whatsoever (needles!). GI said you really need the buy in from the kids so if DS isn't interested, he's not going to push. He's been holding at the 10th% (up from the 5th) and may be following my short side of the family. I just hope he doesn't regret turning down the injections when he maxes out at 5'6".
It's been two years since DS has had scopes or an MRE, so that came up as well. If this next six week cycle doesn't go well, then we'll do both, but I said an MRE will only happen if he gets some sort of anxiety reducing med with it. I (we) hate MRE's, but as you know, it's the only way to see his anastamosis site and look for other stricturing in the small intestine. If he doesn't do them this year, then he'll have to for sure next year with standard of care.
I think DS had a really hard time at this appt. He was very, very quiet. Aside from going to his infusions, he's essentially been Crohn's free, so to speak, and then we spent the entire appt talking about the what ifs and the things that still need to happen, symptoms or not. Some denial going on, I think. I know we still have several years, but he has no interest of taking charge of his healthcare. Still the little boy who needs to hold mom's hand, yet wants to be treated like an adult for everything else in life.
On a bright note, DS #2 got poked for a Celiac panel and did awesome. We do them every 3 years on him since DS has Celiac. He is the complete opposite patient as his brother. Am I an awful mom to say it was rather refreshing? I had to be careful to not over praise #2 in front of DS.
Sorry that was all so long. Mom therapy!
