Chicken Part 2

Update: I had this saved in my drafts from a few days ago, I never got a chance to get it posted.

Chicken seems to be going ok. Yesterday I wondered if we were going to have a fail but she seemed to eat well last night and then again for lunch and dinner tonight. There's so much gray area, when I wish it could be black and white. With the rice and oat reactions, they were definite, and serious enough for me to not even consider touching them with a 10 foot pole ever again! It seems like so many of our foods that we've trialed in the last six months have been the same pattern. Day One is ok, Day Two is questionable, and then a few more days of questionable symptoms that we push through until finally, she is back to normal again. I can't help but wonder if her body is just that sensitive that anytime a new food is introduced, she has a sensitivity with it until a few trys later. Does this even make any sense? We push through symptoms and then she is fine, tolerates the foods just fine.
My mind is constantly going back to the pear fail we had this summer. I should probably read the posts I wrote around that time to remind myself of what happened. I have been wondering, since she's ok with so many other fruits, if that was a coincidence of symptoms and if I would have pushed through, would she have been fine? I do remember how sick she was, I have a picture of my poor baby laying on the floor, so uncomfortable that even Mommy's arms weren't comforting enough for her. I can't figure this out and it makes me crazy! I really want to think that her only FPIES foods are the rice and oat, that she has a soy intolerance and a dairy allergy and then just go full board with everything else, but do I dare? That sounds easy enough but still, avoiding the dairy and soy is extremely hard by itself!
I think I'm going to give chicken a break for a few days and then trial it again to see if we can figure this out. I wish there was another way to know besides trial and error on everything!

Chicken!

I've been trying to start food trials again to add on to Kara's menu but she has not been eating well lately. It's hard to trial a food when she won't eat anything!!!

We got really brave one night last week while making supper and decided to trial (GASP!!!) CHICKEN! (Remember my turkey Thanksgiving post? No poultry...) It's on our "Common Trigger Foods" list on our fridge but she'd had it here and there before. This was all prior to us being anywhere near a baseline with her but I always sort of wondered if it'd work or not. Chicken is a staple in our house so it's been even more difficult to come up with meals lately and making a separate meal for Kara three times a day gets difficult. That's for a later post though...

So, we gave her a few bites, I think two nights in a row. It was hard telling her symptoms because we've been dealing with the effects of this cold that she's had too. In the chaos of our lives, we stopped it. I've been incredibly frustrated again at every meal lately. She.will.not.eat.anything.

Tonight I gave her some hamburger with ketchup in it, usually a favorite. She squealed in her chair and threw her spoon - hey, at least we've graduated from throwing entire plate when she's not happy with what's on her tray! I gave her some balls...I mean, peas. This usually goes over well - a good squish with her finger and then she picks each one up and eats it. She pushed this away and squealed. I put some jelly on some of her special bread. She smiled, took a bite and then was mad again. I had her sit at the table with us and Brian cooked up some chicken breasts we had in the fridge. I gave her a few bites of that (with the ketchup, of course!) and she ate them right up! She shocked me! The first challenge of a food challenge is always getting her to eat the food. She successfully had a good size serving of chicken tonight and loved it. I'm REALLY hoping that it loves her too!

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.