GI Follow Up

Earlier this week was Kara's six week GI follow up. Dr. S. put Kara on Prilosec her last appointment to see if it would help with her urpiness but wanted to see her soon to see how it was going. My report for her was that we basically have gotten nowhere with trials, let alone trialing the Prilosec!

I began this appointment telling her that we had decided to re-trial green beans after a questionable reaction night and it ended on day three with a full blown FPIES vomitting reaction. We are still having problems from that trial - Kara has been waking in the night screaming and it's been hard to get her back to sleep. She's also had lots of icky post-reaction diapers. I then went on to explain how we couldn't get anywhere with the Prilosec. She'd have it for a few days, do much better but then get so constipated, a symptom Kara has NEVER dealt with!

It was decided that we aren't going to be doing any food trials for the next few months. With Kara's chronic ear infections over the last six months and being off and on antibiotics, her gut is out of balance. She thinks that full rest with Kara's safe foods only, along with Kara's surgery should help her out - the surgery will help with the ear infections so with NOT being on antibiotic we can hopefully find her baseline again. We will be following up with her in two months to see if we can begin food trials again. She's also going to be consulting with Kara's Allergist to see if he has any insight on this as well. I'm not sure what our next step will be if this doesn't work - I'm thinking scope again (UGH!) upper GI possibly, no idea. She did give us a prescription for Zantac now - sort of a step down from the Prilosec so we will try that in the next few days.

I was thinking that no new good trials would be ok since we really haven't passed any foods for a few months. We've done trials here and there but never anything long enough to actually pass. I've given her things here and there to just try once in  a while and I almost did this the other day before I remembered that we are on hold from all of this! It's going to be tough, I'm afraid, with summer here. If we'd be out somehwere and there was a new food, once in a while I'd give her something - pineapple for example. Knowing we had nothing else new in her diet, if she had any off symptoms it would be from that. It's going to be a learning experience for us - just like everything else is!

Being at this appointment, I was again, very impressed with Kara's GI doctor. She has come a LONG way with FPIES. Last fall she wouldn't refer to it as FPIES - it was "simply" multiple food allergies, followed by food protein enteropathy. This time she openly called it FPIES and even talked about it a little bit. She said "my other FPIES patients" which caught my attention. I know she sees another little girl who's mom is active in our FPIES boards but she made it sound like there were a few! I asked her "are you seeing a lot more FPIES patients lately?" Her reply "I'm not sure that there are a lot more out there, it's just that we didn't recognize it before." WOW! AWARENESS!!!! This made me so happy to hear that they are finally starting to accept it as an actual diagnosis even though the only way to diagnose it is symtomatically and ruling everything else out!

I've stuck with Dr. S from the U - I've been very pleased with the way that she's cared for Kara. So pleased, in fact, that even though she didn't necessarily believe in FPIES 9 months ago, her treatment wasn't going to make any difference so we've stuck with her. (Remember our first GI Appt? "Your daugher does not have FPIES, FPIES babies are failling to thrive, your child is not failing to thrive." UGH. I still shudder when I think of that AWFUL doctor.) I'm very pleased in how she wants to keep following up with us, not just letting us go at this point. I'm fine with our care plan with her for now and am hoping that in a few short months, we'll be set up to not have a follow up until next years birthday!