Remicade is an infusion. I told our doc that I would work on pills but in the meantime he needed to figure something else out. So we did Pentasa, which is a capsule full of granules that I dumped into applesauce. We also did enemas along with prednisilone, fish oil gummy vitamins, gummy multivitamins...well, you can see my siggy lol! Your dd may like the gummy vitamins...my dd hated chewables.
We take liquid ferrous sulfate and isn't Prevacid available in liquid form? It's for GERD, right? We tried Miralax for a prep (laxative, right?) It's T-I-N-Y and we worked at getting down it for an hour before vomiting.
I think it's great that you are working with her to get the pills down but if your doc can make it easier on her, why not do it? (Unless, of course the meds are contraindicated in liquid form for some reason). Poor kiddo...IBD is enough to deal with.
I have never brought her to the ER. She has blood in her stool when she is symptomatic but we went to her primary care, were hospitalized twice, and referred. The ER is only going to poke, prod, radiate, and refer you. As long as our peds GI knows what is going on and she isn't bleeding profusely I will avoid it. We also haven't had any imaging (xray, MRI, CT) done other than the colon and endoscopies. I feel that because she is so young she will end up needing imaging soon enough and right now it will not change her course of treatment. (ONE abdominal CT increases your risk of ovarian cancer.)
Sorry, got on my soapbox there. Anyway, I am not telling you not to take your dd to the ER as every kiddo is different, but our peds GI on call docs are fabulous and sometimes calling them can help us avoid a long night in the ER.
WHen is her bday? My dd is pretty mature for her age so we just explain when we need to go on new meds, get IVs, stay at the hospital, get additional testing. I just tell her that most people don't bleed/have diarrhea daily/have pain and we will do what we can to get her better.
Plus bribes are good
We were on flagyl (super bitter) and she got 20 prizes (one a day for 20 days) for each day she took her doses. Maybe in the beginning this will help with the pills? I also pick up a few extra things for when we are hospitalized and her infusion days. She does super well with IV's not (she still cries, but doesn't move a muscle as she knows it will be quicker and easier.
Please know that you could not have avoided UC. Did you mean that her constipation made things worse? If that is the case, hindsight is 20/20, right? We do the best we can with the info we have.
(((HUGS)) I know it isn't easy, but it will get better. You've found the BEST forum full of supportive people to bounce everything off...stick around!
Oh, and there are siblings here...a three year old and four year old (?) both with IBD...maybe mom will chime in too!
