Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Wednesday, July 20, 2011


Today was the day for Kara's much anticipated GI appointment. I typed the mental list into my phone on our way to the cities, while discussing things with Brian. I kept thinking of our family doctors words at Kara's last appointment, where I broke down in tears "we will get this figured out, Kendall, and if we don't, we'll send her somewhere else." Her, just as determined as me, to get Kara figured out, knowing how out of sorts she's been.
I had a list of labs that I wanted to talk about possibility of having done. Kara hasn't had much for testing other than a recent hemoglobin (which was fine) and when I've asked in the past, I was told they wouldn't  mean much because we have no baselines.

I had it in my head that I wanted to have Kara see an immunologist. I can't put it into words how I came up with this, so explaining my reasoning to Brian in the car on the way down was extremely difficult. In my mind, everything seemed to fit together, and an immunologist seemed like the next direction to go. This made it onto my list, not quite sure how to bring it up, when I couldn't even make sense of it out loud!

The next part of it was explaining the frustration between the connections we've seen with Kara. The skin problems, with the respiratory problems, with the GI problems. They all run together. I KNOW they do. When one is flaring, the rest of them are bad.

We got to the appointment the nurse said "you are here for a follow up for reflux and diarrhea, right?" Um. Yeah. The new reflux meds that we were supposed to trial six weeks ago that we never even got around to starting. (Hey, it has been a crazy, insane, impossible to start anything new six weeks.) She got the vitals and the doctor was soon in.

Dr. S. came in and started asking how Kara has been. I let her know we've been struggling. The night waking, the naughty behavior, the trying to distinguish between what's pain and what's "two", the eye-watering-can't-get-out-of-the-house-fast-enough diapers, the gas, the burps, the near-vomiting, explaining every symptom we've had. I stressed to her that there has to be something more going on because she USED to be at baseline and now we have no clue what that is. Currently, it is clear that Kara has tummy pain nearly every single day. She's been able to tell us when she has pain and "owie tummy" is coming out quite often, MOST of the time, she is telling the truth.

Dr. S. is mostly worried about Kara's urpiness at this time. We are to do a four week trial of Zantac every day and if that doesn't fix the night waking and urpies than we are probably going to be talking about taking another look inside...aka scoping again. (knowing that she tolerated the anesthesia decent the second time around, and that steroids are a MUST, this doesn't scare me as much as it did the last time!) She wants us to do a few stool sample tests - one to test for blood in the stool and another to measure I believe, fat in the stool, basically to check for malabsorbtion. Kara had some blood work done today as well...a full blood count, sed rate, and CRP. This is exactly what I had in mind before her appointment!

We started talking about my frustrations of the eczema, airway problems and GI problems and I stressed how they have got to be all related. I explained my frustrations at Kara's last appointment at home and with that Dr. S. said that its' time to have Kara see an immunologist. I could feel my eyes burn, I could have started to cry but held it back. ALL OF MY RESEARCH HAS PUT ME ON THE RIGHT TRACK!!! I seriously wanted to get up and give her a hug. She was one step ahead of me and in this FPIES world that we are in, that is UNHEARD OF. She said she is fairly certain that everything is going to come out ok from immunology but it is definitely something we need to look into.

Dr. S asked when we saw Allergy last and I explained that we saw Dr. H in May and it was basically a "you're on the right track, come back in a year" appointment. I said I was grateful because she had the RAST and skin prick testing to know how her dairy and peanut allergies are going but other than that, there was no direction. She is going to consult with Dr. H to see if he can help us anymore than that at this time. I also asked if there was any other Allergist that she know of that would be of more help than he is and she said no, he is basically the best around for these types of problems. Whew. We ARE with the best! I hope something good comes out of that conversation too!

Next, the skin. Yep, our GI even talked with us about Kara's skin! How great is that? She asked if we've ever seen a dermatologist and I said no, explaining that our family doctor has helped greatly in this area. We get it cleared up but then it flares again. Dr. S wants us to see a dermatologist now, and one down there, to have our team all together to communicate, and have all the records right there. She picked one, and said not even a pediatric one, Kara needs to see one who sort of specializes in more complex cases, where it's more than just skin that's the problem.

meds work and help the other problems than we follow up in 3 months. Once again, it's going to be busy. I'm anxious to get these labs underway...just waiting for, well, you know...before we can get them to the hospital to be processed! =)

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