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.

Thursday, July 29, 2010

Allergist Appointment # 2

I don't even know where to start this after our appointment today. I feel like we are moving backwards in our journey with Kara.

We talked on our way to St. Cloud today and added to our list of questions that we had for the doctor. I was incredibly nervous for this appointment, probably because I felt like we were going to come home with no more knowledge than we already had.

Addressing Kara's many episodes of diarrhea and "nasty" diapers: let's test her for more foods than we've already tested her for by doing the skin prick test. He took the can of vegetable soup that I brought (the one she possible broke out in hives from), reviewed that and tested her for potato, beans, peas, carrots, along with many more. They all came up negative for an IgE allergy. More on the allergy test in another post - that deserves a post of it's own...

Addressing the possible asthma: skin prick tests for molds, dusts, cats, dogs, and a few grasses, I believe. All came up negative. He said at this point we can discontinue the pulmicort nebs and just use the albuterol as needed. We'll follow up with this, especially if it seems that we're needing the albuterol. He wants to see what her coughing is doing and we're taking things one thing at a time. We went over my seasonal and animal allergies and the fact that Kara was hospitalized with RSV in February and figure that she WILL end up with them but first things first, we need to get this digestive stuff figured out. For now we're leaving the asthma dx as a possible one. Whew.

We went over the few "reactions" that she's had that we are questioning blaming chicken on and we're trying to get to the bottom of all of this. What he decided is that we are going to remove a few more foods from her diet. She is now restricted from chicken, peas, beans and other legumes. Peas just happen to be her favorite vegetable. We also have to restrict sorbitol, a sweetener found in some foods as this is known to cause diarrhea in people. He also said he wanted to restrict barley and I gasped. Barley is the ONE food that Kara has been eating since our first trip to the gastro, last January. She's tolerated it just fine, to our knowledge, and no FPIES reactions have occured from this, from what I've been able to tell. I stopped him and explained all of this and he decided we could keep going with the barley.

I asked about skin patch testing and he said no, they don't do that there. Besides, Kara's eczema gets so bad that it probably wouldn't be accurate. It didn't sound like he was real fond of this test. I also asked about food challenges, he said these are done in the clinic, around 2 or 3 years. I asked if he thought gastro would still be a good idea and he said definitely, it would be good to get another opinion. (good thing, because I have appointments with 2 different gastros still!)

So, we left there with a bunch of "no's" but we are restricting more. I don't feel like we are headed in the right direction, but this is the name of the game, I guess. It's all trial and error to see what works. There's no real medical "test" that can be run for a positive with FPIES. It just adds to my frustrations. Now we just sit and wait again. Wait for the appointment in the cities, and hope that we don't get the same amount of nothing again. I want to know if there are ANY doctors in the state of MN that KNOW about FPIES. Like, really KNOW about it. I may be on the phone all day long tomorrow if I have to, to get some answers.

1 comment:

  1. If you find a MN doctor with knowledge of FPIES, you'll let me know!?! I am at Mayo and no one here knows either...and although we have great doctors- I'm getting fatigued with not having someone stay caught up to my little man's needs. We went to CHOP to get his diangosis and that is where our Allergist is- he remains a part of the team, advising the doctors here on next steps as needed but it sure would make a huge difference if we could have the whole team be as knowledgable as him and sit in their offices for his follow up visits.
    Stay strong- will message more later!