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.

Sunday, October 30, 2011

Allergy and GI

Monday morning I called MN Gastro, the group that the new GI is through. I was able to talk to the Nurse Coordinator, who was wonderful. She had notes that the Dr. had written on Kara and let us know that they were able to get Kara in to see their Nurse Practitioner on Thursday of last week or one of the other GI's the next day. I let her know that I wanted to go with Dr. Ott's suggestion on Dr. Aru and after discussing Kara's care and their processes, agreed to have Kara see Abby, their Nurse Practitioner. In this phone conversation I was able to go through with the nurse, what our experience had been with the U and was able to ask her what their processes are with care. Everything from this conversation made things sound very promising and gave me hope.

Kara saw Dr. M, her primary doctor, on Wednesday for labs, a height and weight check, and just a general check in of how the last few weeks have been going. Kara was SOOOOO excited to see Dr. M, squealing and ran right to her when she walked into the room. She sat right with her on the chair during the appointment! Kara's weight has dropped just slightly, which wasn't all that surprising since she's only been on formula. She went from 26.4 pounds to 26 pounds even. She is 32 3/4 inches tall. That's 22% for weight and 13% for height at almost 2 1/2 years old. She's hanging in there, having gained a little on the height curve and dropped a little on the weight curve but for the most part she's been maintaining her own little curve on the growth chart and that's all we can ask for at this point.

Dr. M. mentioned her paleness right away. I let her know that Kara actually looked pretty good that day, as she had pink in her cheeks but was still very puffy. We discussed labs, since Kara's had some off iron labs in the past and agreed that those would be run. She also had some additional labs done to check other levels that might give us an idea on some nutrition issues.

We headed to Minneapolis Wednesday night, as Kara had an 8:30 appointment with Dr. Ott the next day. I had made this appointment to follow up with Dr. Ott following Kara's reaction the week before and also as a prep to our new GI appointment. As usual, Dr. Ott impressed us, spending lots of time with us, encouraging us that we will get help and will get this figured out. Kara has some upcoming appointments scheduled at Mayo in a week now, and I let her know this. We have both a GI and Allergy appointment so I wanted her to know that, as they Ave been on the calendar for over two months now! I let her know that I don't think we need allergy, as we have her on our team and she's been amazing. She asked who we are seeing, let us know that that doctor is a colleague of hers and that she would love for us to see her and to see what her take is on Kara, to see if she has any additional ideas regarding her care. She strongly suggested we keep both of these appointments since we already had them made. She checked over Kara's labs, which surprisingly came back pretty good, with the exception of her liver function tests. She's said she'd let GI handle that, since she wasn't quite sure what to think since they were elevated. With that, we left, knowing that we have her and her office's full support in Kara's care.

We headed to St. Paul for Kara's appointment with Abby at MN Gastro. We gave a full history and I had very brief notes about Kara's history from her first food fail, to save us some time because these history parts of the appointment are SO time consuming and confusing! Abby came in to the room and Kara was so welcoming, liking her from the beginning. She reviewed Dr. Ott's notes and we basically pleaded to her that we needed them to help us, explaining how things have gone at the U. She basically said "Dr. Ott wants a scope? Then we'll scope her!" Dr. Ott, at this point, feels that we could be completely missing something digestively that we are blaming on food. Since Kara had corn safe for so long, or so we thought, and upon re-introduction, failed it, we are all completely puzzled at this situation. Abby wasn't too sure either, but made it sound very promising that they would get to the bottom of it, and if they couldn't figure it out after exhausting their efforts, they'd send us to Cincinnati in a heartbeat, but at this point, there's no sense to go there when there is so much we can rule out here first. (THANK YOU.) I'm still so confused at what the deal is/was with the U and really feel like they were just done, had no interest, therefor did nothing to go out of their way to help us. It sucks, and we essentially wasted A LOT of time, energy, and emotion trying to get through this with them.

We left this appointment with a scope scheduled, two weeks away with an appointment the day before meeting the doctor. I was perfectly satisfied with the way this appointment went, and breathed a great sigh of relief, a weight of 10,000 pounds finally lifted off my chest. Abby said she'd be in touch after speaking with Dr. Aru on Monday with further instruction, as far as whether or not we could begin food trials again, or to wait for the scope.

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