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.

Saturday, January 29, 2011

Post Reaction

Yesterday Kara started the post reaction symptoms which reassures me that what happened the night before was an FPIES reaction and not just a fluke vomiting episode. Yesterday we noticed how her eyes were really puffy and her skin tone, very pale. Last night she started with that barking cough again that we just got rid of! We kept her diet very basic yesterday, backtracking to bottles again when we were just about ready to be done. I wanted to make sure she was hydrated and was scared to give her too much for food.

We have ruled out ham - that was the only food she had for dinner yesterday that she had the day before. I'm thinking that I'll have to try beef today for lunch to see if that was it. Very confusing, and scary to try any of those foods but we have to know. They seemed safe for so long. If she does fine with those few foods she had for dinner that night, than we'll have to settle with the idea that she got something she shouldn't have had, and that we'll never know what that was. I don't know what I'd feel better with!

Friday, January 28, 2011


We took a break from the chicken and went back to Kara's two safe meats - beef and ham. She had beef for lunch yesterday in her spaghetti and then ham for supper last night, along with a little bit more beef when she was at Grandma and Grandpa's house. I packed her safe little meal, as I always do when we leave the house with her. We were taking her big sister out to her favorite pizza joint for going to bed like a big girl all week. Leaving Kara with Grandma and Grandpa would be more fun for both girls and we wouldn't have to worry about keeping Kara out of the pizza!

We got back to pick up Kara, she ate really well, all of the dinner we sent with - ham, green beans and some Kara-safe oyster crackers - and then she wanted more so they gave her a Kara-safe hotdog. While we were still there she had a very icky, questionable diaper. What the heck? We went over with his parents everything she had eaten through the day and couldn't figure it out. Oh well, it's not unusual for her to have off symptoms lately. I started thinking back to how I thought she was having a build reaction to the chicken, then reminding myself she hadn't had it in 2 days.

We packed up to get home for bedtime, to stick with our routine that we had going so well. Both girls were in bed and Brian and I were watching TV. We heard this horrible scream, he muted the TV as I jumped up to run upstairs. He asked if he should come and I yelled "follow!" Deja Vu struck hard. The screaming, the foul smell coming from her bedroom, I knew what was happening before I even got in there. We found her sitting in her crib, covered in vomit. I grabbed her and went to the bathroom to get her cleaned up while Brian stripped the crib, the entire time wondering what the heck she was having a reaction to. Once I got her settled down and cleaned up we went down to snuggle, to make sure she was ok. Her tummy was one big knot and she had a few really big, questionable burps. No more vomiting occurred though. (Very strangely, I forgot about our ER plan - the letter we have in place if she does have a reaction.) I think she did ok with this one because she only vomited the one time. She took a few sips of water and snuggled in while he called his parents to go over everything again.

We have no real idea what the heck caused this reaction. It wasn't chicken because it's been a few days since having it. It was beans, ham or beef unless she got a hold of something she couldn't have, which I kind of doubt - she's SO good at picking things off the floor if she finds something, and bringing it to me. I can't imagine what the heck happened. It's been over a year since her last vomiting reaction. I want to say it was last December that she had the oat reaction.

Today's diet? Kix and Neocate so far. Can't go wrong with that - I'm not ready to give her anything after what happened last night!

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!

Wednesday, January 19, 2011

Where's Your Teeth?

Kara has been into pointing out features on her face lately. She loves her eyebrows and now, her new favorite is her teeth. I think they are my favorite too!

"Kara, where are your teeth?"


Earlier this week, I brought Kara back to the doctor. Her cough is gone for the most part, but she has still been really irritable, not sleeping well, and I thought that warranted a return for an ear check. Both of her ears are still full of fluid.

We discussed this fluid problem. In a "typical" child, it was explained that they'd let this go about three months before a referral to an Ear, Nose and Throat specialist. We all know that Kara is far from "typical", even more so as the Cardiologist explained how sensitive it seems her entire body is, after reviewing her history. Basically, we have a lot more than just GI problems going on with Kara. Kara's doctor wants to see her back in 3-4 weeks and it was decided that if she still has the fluid at that point we'll be referred to the ENT. We really don't want to risk anymore ear infections and she's high risk for them with the ears being so full of fluid. If her irritability increases or she spikes a fever again, back in we go.

Ear tubes are not a big deal, a no problem, in and out procedure for "typical" children, so why we are jumping the gun and worrying about this for Kara, when really, it could help her out immensely? In October, when Kara had her EGD done, she had a terrible reaction to what we think was from the Fentanyl that they gave her but we really have no idea. She ended up in tachycardia for 24 hours afterwards and had some horrible swelling in her feet and legs. It was the scariest thing I've ever gone through in my life, watching her so sick! For now, we are praying that these ears clear up but keeping our options open, trying to weigh them out.

I wasn't sure if I was going to blog about all of this or not, since it's not necessarily FPIES related, but then decided, maybe it is - FPIES babes are definitely non-typical so even though it affects their GI system so bad, it really affects so much more than that. It seems every few days, we are finding out different connections on how our babies have so much more in common than one would think!

Monday, January 17, 2011


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!

Monday, January 10, 2011

Cough, Cough!

Last Thursday I thought for sure we were headed down the road of Kara needing to be admitted for fluids again. She was so, so sick. She laid on us and cried, we fought her changing her diaper every 10-15 minutes. Thank goodness we didn't give her anymore of the Augmentin. Thursday evening she started perking up a little bit and by Friday she seemed a lot better.

At her appointment on Friday she was still really ornery, irritable and looked sick but a lot better than the day before. Both of her ears are still pretty red, and she's really "junky" sounding. We have had to up her nebs to three times a day, adding Pulmicort to the mix now. I was instructed that from now on, at the first sign of  cold, to start this cocktail. If she doesn't show good improvement from this, we'll have to discuss putting her on Prednizone. If she spikes any fever at all again, we have to bring her back in as well. Poor baby.

Today she is doing much better but still has the really icky cough. I keep hoping for some major improvement in her airway and hoping we don't have to go the route of any more meds. She has an ear check in three weeks so hopefully we won't have to go in until then! As if this FPIES stuff isn't hard enough to deal with, we have the airway and ear stuff coming up now. Ugh. It's a never-ending battle!

Wednesday, January 5, 2011

Sick Baby!

Kara has not been getting better. Poor baby! Her cough is awful, her nose is still running, she still looks sick. Today is Day Five for the antibiotics so I called the doctor today. She wondered why we were put on Augmentin, something so strong for her poor little digestive system, and told us to call it quits. Kara has an appointment on Friday morning with her, if she can make it that long, otherwise we'll see someone else tomorrow.
The augmentin is wreaking havoc on her body. Her bottom is so  raw, it actually bleeds when you wipe it. I got a call at work yesterday that both outfits were used from the diaper bag so to pack two for today, then today that all three were used. We've been caking her bottom with desitin, with a&d, with whatever idea I come up with each time. She is SO sensitive.
We are going in the wrong direction with the bottle. She won't eat so we are giving in to feeding her a bottle anytime she asks and anytime in between. Poor Kara gets so dehydrated so quickly and we've been down that road a few times in the past so I'm taking no chances of it happening again.
I guess we can add Augmentin to her list of non-tolerable meds. Last winter it was Zithromax, and that made her so sick, she had to be hospitalized. These are the only two oral antibiotics she's been on, and so far, two strikes. I'm hoping we can pull through this. Thank God she's been healthy since last winter!

Sunday, January 2, 2011

Happy New Year!

We have been looking forward to a fresh start of 2011 for the last month or so of 2010.

Kara has had a lingering cough for a few weeks now, needing to be nebbed occassionally. Yesterday morning, New Years Day, her cough seemed to be worsening. By noon she was in bad shape and stayed that way through the rest of the day. We nebbed her over and over again and she'd cough until she'd throw up. By 9:00 last night the nebs weren't helping and she was getting worse so we made the decision to head to the ER. While waiting, Kara coughed and coughed, almost puking again. By the time the doctor came in to listen to her, her lungs were cleared. (go figure!) He checked her over and looked in one ear - bright red, infected. Hmm. Other ear, same story. She's never had an ear infection so this shocked me but certainly explains a lot.

She was put on antibiotics and with that, comes the fear of how she'll handle them. We have two doses in and side effects are already beginning. Hopefully she won't continue to go downhill from here. Sometimes it's a fine line to weigh out risks versus benefits.

Sunflower Seed Butter

It's been quite a week around here! After I was sure that there was no reaction from the chapstick incident, I decided to trial the sunflower seed butter. I put some on a piece of bread and Kara would hardly touch it. She was disgusted by the feel of it on her fingers. So much for that - I think she may have gotten a few little licks of it but that was about it.

The next night, I thought we'd give it another try. I spread some in a whole wheat tortilla and rolled it up, then cutting it in small pieces for her to pick up. I also toasted a piece of bread thinking that cutting that into bite size pieces might work as well. She started eating it really well, and really seemed to like it. A short time later, Brian's Mom stopped over and was talking to Kara when she noticed that Kara's hands were all red. She's had eczema all winter so I didn't think too much of it. A few minutes later it was her wrists and a little bit up her forearms. I started to panic a little and grabbed a rag to clean her up. It seemed like she was breaking out in hives! We got her all cleaned up and I dug the epi-pen out of the cabinet - it's been put away since we found out that epi isn't going to help her with an FPIES reaction. My anxiety built as I thought of what could potentially happen. We got her in the tub to get her all cleaned up and it turns out it was the eczema just breaking out worse from the food being on her skin. She's had the butter a few times since and has done just fine.

We have another pass on board, but the fear of a fail will always remain...