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.

Monday, August 30, 2010

Poor Baby!

I didn't post much about the pears fail yesterday because I wasn't entirely sure what was going on, other than a fail. What we have is a very sick baby on our hands and I don't want to fail another food, ever again. I understand that the process of finding foods that Kara can eat is going to more than likely involve more fails but hopefully this one is fresh out of my mind before that happens again.

All weekend I kept commenting on how Kara wasn't herself and that she had the pear fail. Her diapers were bad, her coloring was bad. Her complexion had a sort of gray-ish tinge to it. Sure she was running around and playing but she just wasn't quite right.
I left for a few hours yesterday afternoon and then came home to a fussy, warm baby. I took her temp and it was 102. I reluctantly gave her motrin finally because she was so cranky and we needed to get that fever down. That resulted in a sick baby running in circles around the room. I hate what it does to her! It takes her fever down but she's still sick, has no balance, falls and gets hurt. She refused her bottle last night and I pretty much knew what was to come. I woke up at 4:00 this morning panicking because she hadn't been up yet. I ran up to check on her and she was burning up. I took her temp, again, 102. She popped up so I got her up, gave her more motrin and tried a bottle again, with no luck. We sat in the chair for an hour as she whimpered on my lap, then I put her back to bed.

I got up this morning and made her an appointment with her family doctor and also called the allergist to catch him up on everything that's been going on in the last few weeks. We made an appointment in 2 weeks to see him again, after her GI follow up. I'm not sure he has any real idea what to do but wants to be updated, anyway. In the meantime our doctor is doing some looking around for an allergist that can maybe help us out better.

While at her appointment we ruled out possible causes of the fever. Ears are good, lungs are clear, throat looks good, and then started looking in her chart at her past fevers. She's had a lot of them but we never really had a definite answer to why she had them. Looking back, they run hand in hand with diarrhea so this is opening up the picture a little more. She's more than likely been having small reactions all along that we couldn't pin point (until the elimination diet) and tends to run a fever right along with them.
Kara's weight is down. She had her 15 month well child check a week and a half ago and we were so excited because she finally gained weight. She was 21 pounds, 6 ounces. Today she was 20 pounds, 12 ounces. This is on the same baby scale, with only a dry diaper on, both times. This is discouraging. She hasn't thrown up, I explained to the doctor but has been really "urpy" and as I said that, Kara showed her what I meant. We are watching closely. She's not dehydrated yet but close. We are doing unflavored pedialite but she won't touch it. She took a total of 14 ounces of Neocate today and a few bites of kix, some banana and some corn meal cereal. I put her to bed with a 100.6 temp and I'm hoping for some improvement in the morning, otherwise I'm afraid we're going to have to go in for IV fluids.
We need a few more days of just corn products and banana to get back to baseline before we can trial anything else. With her refusing all but a few bites of food I'm hoping we don't run into food aversion problems again. Hopefully she's back to herself soon, it's been a tough couple of days!


  1. Ellie often has run odd fevers during what I now know were reactions. Never that high, though. It does not fit FPIES by definition so I did not pay attention at first, especially since other moms mentioned a DROP in body temperature. I wonder why pears are such a problem for FPIES.

  2. I am constantly checking her head now for a fever when I question if she is reacting or not. She's never really sick, but like I said in the post, runs high fevers that are unexplainable.
    When we did pears I was so confident that she was goign to be ok with them because it seems that they don't cause the typical symptoms. We were way off on that one!
    I think I'm going to start her on apples now that I know the sugars should be fine. It would be nice to give her some "apple juicy" when her sister gets some! :)