Hi - long time member, mostly on Higher Ed boards etc, name changed so as not to have the dots connected.
[Sorry, this got a bit long, apparently I had a lot to get out!]
I have a just turned 18 yo dd with UC (diagnosed 3+ years ago), on fortnightly adalimumab injections. (Which she won't do herself, but that's a whole other issue.) In her second year of A levels, wants to go to uni next year so really want to encourage her to take on more self care, at 6th form college where her timetable means she only needs to go in 3 days a week which is really good from a a fatigue point of view although her attendance still isn't great.
She had one flare up in the spring before her GCSEs - had been on infliximab since diagnosis but had stopped - and that's when she started the adalimumab, which has worked well since then. No bowel symptoms ever (according to her), but always fatigued and prone to coughs colds etc. This year of course has been much better re random infections!
Anyway, she's been really under the weather for about the last 3 weeks (my radar had been alerted earlier as she didn't seem quite right, but it's been much worse just recently) - has only been to college 3 times this month, lots of joint aches and pains, off her food etc. I am worried that she's having another flare up.
BUT. She will not do a stool sample. I don't think she's ever done one at home, she just refuses. She's transitioned to adult care now, and her new consultant saw her in the summer, and asked her to do one as it had been a while: sent her a link to download an app, and a kit to test your faecal calprotectin levels at home. She's not opened the email, and the kit is in an unopened envelope at the back of a cupboard.
She had blood tests at the GP a few weeks ago for an entirely unrelated issue, and hasn't yet contacted the surgery to find out the results. I don't even know what was being tested, so no idea whether any inflammation would be picked up, but of course the calprotectin test would be the best thing to do.
She could do the kit at home (have offered to deal with it all for her, but don't know whether that's better or worse!!) or just put a sample in a pot and take it to the surgery, but she won't, and she won't even talk about it, just leaves the room.
I'm so frustrated! On the one hand, yes she is now legally an adult and I don't get to have any say over any of this. On the other, we are still entirely responsible for every other aspect of her care, and she's quite a young 18 anyway (combo of being the baby of the family, and being ill). Any suggestions on how to get her to engage a bit more?
Thanks in advance x