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.

Wednesday, December 28, 2011

Following Up

We followed up with Kara's allergist last Tuesday, which meant another trip to the cities, less than two days after getting home from there! I had called the allergist's office on Monday morning to let them know what happened over the weekend and they wanted to see her the next day, so, back we went!

I didn't have records or anything yet but the doctor and I talked about the circumstances of everything that happened. We decided to RAST test Kara for apple, due to the reaction and the hives, as well as RAST test a few other foods. I explained that I wanted her tested for corn. If Kara simply (ha!) had an IgE allergy to corn, that would explain so much! The reaction, the eosinophilic colitis, the swelling all of late summer and fall...I mean, EVERYTHING! She chose a few foods to add since we were doing blood work anyway, and then repeated the iron labs (Kara's iron saturation has been low in the past). She began asking about some other labs and what her results where from her inpatient stay. She asked about her TSH and I explained that I wasn't aware of Kara ever having that test ran, so that was added to the list as well.

We discussed future food trials and with that, Dr. Ott decided that we needed to re-trial chicken for two weeks since we were fairly certain it wasn't chicken that caused the reaction and then she wants us to re-trial the apple again. This is really scary, in case it was the apple that made her so sick, but if it wasn't, it would be a nice food to have back in her diet. I can only hope that we can recognize symptoms before they get that bad, if that's the case. After those two, it was suggested that we trial spinach. We shall see...

Dr. Ott called a few days later and let us know that Kara's TSH levels are very, very low. She called Kara's primary doctor and it was suggested that she now see an endocrinologist. Add one more specialist to the list, I suppose, but MAN, this has gotten just crazy. This does explain a lot of Kara's symptoms so I can only hope that this finding will help us out. We are waiting on hearing back on an endo appointment but for now, Kara will be going back to the clinic tomorrow for a bunch of lab work that the endocrinologist wants done before we go. Wonderful...

With the holiday celebrations behind us, we gave chicken a go tonight. Kara was so excited to have chicken with the rest of us. She took one bite and that was it. She covered her mouth with both hands if we said the word "chicken". It's hard to do a food trial when she won't eat the food! As we were cleaning up supper, she walked back to the table and took a few more bites on her own time. She's a bit stubborn that way! We are at the two hour mark and things are ok. I hope our night goes ok, chicken would be great to get back in her diet!!!

Wednesday, December 21, 2011


While Brian was gone at the store getting Kara's benedryl, Kara started getting really fussy and was in obvious pain. We had made plans for some family to come down to the hotel to have pizza with us and hang out so they were on their way and I was holding Kara, rocking, on the bed waiting for Brian to get back. She had a very obviously bloated tummy and I was getting really nervous. She finally had a full diaper of nasty, rotten diarrhea. It amazed me at how much and how sick it was making her. I was just finishing cleaning up when Brian walked back to the room. He called the front desk for air freshener, a clean bed sheet and comforter, and extra garbage bags. After this is all a little bit of a blur, other than knowing that something wasn't right. Brian's brother and his family got to the hotel and we went downstairs to wait for our pizza. Kara was snuggling on my lap and started getting really urpy. I thought for sure she was going to throw up so Brian helped me up to the room to get settled with her while Brenna stayed with Jon and Laura. Up at the room Kara continued to have diarrhea, over and over again. I called Brian and told him that she was really sick, if we were in our hometown that I would have had her in the ER already and that I had NONE of her records. They all came back upstairs, got ready to go and we started making plans. Luckily Brian has an Aunt and Uncle that live only minutes away from we were staying so his Aunt came and picked Brenna up and we packed a bag for Kara. At this point, Kara was nearly in shock, not really with it, at all, just SICK. I was waiting in the lobby for Brian to get Brenna settled in the car and Kara had another diarrhea episode, all through her onsie, pants, everything. I had her wrapped in a big blanket, didn't bother with shoes or a jacket, so luckily I was able to just re-wrap her in that. we hopped in the car, I held her in the back seat to try and keep her awake. We got to the ER and rushed in.

The nurse took us back and triaged us immediately. It was crazy busy in the ER at Children's that night. She said to take a seat and within a matter of minutes we were back in the room with the nurse, and the doctor in immediately after. Everything happened so quickly. The doctor came in, asked what our usual treatment is for these reactions and with that, the decision was made to be admitted and the nurse was back in starting the IV. Kara continued to have diaper after diaper in the ER. I had never seen anything like it. Not too long after the fluids were started, her tummy started to slow down a little bit and she was able to rest. We waited in the ER for what seemed like forever (probably because I just wanted to get up to a bed and get some rest!) and then were finally wheeled up to the room. They explained they were busier than they had been all year that night!

We got up to the room and the nurse did our admission and explained the process. Kara still needed to have an abdominal x-ray but they were hoping to be able to have it done with the portable up in the room. The resident would be in to do her admission and then the pediatrician would come in when she got a chance after that. I was told in the ER by the doctor that I would really like the pediatrician and that she thought I'd find that we really had a lot in common. I wondered what she meant by that as I snuggled Kara!

The resident came in and had a million questions for my tired brain to try and answer. I then had a million questions for her. I would start with "this is probably a question for the GI team tomorrow, but..." and she amazed me by being able to answer nearly every one of my questions! She finished things up saying that the doctor would be in at some point and apologized for how busy they were that night!

We finished up the admission with the RN, had Kara's x-ray done (in the room!) and she slept through everything. As we were finishing up, another person came in the room, introducing herself as the Pediatric Hospitalist. She apologized for being so late and that she had been trying to get in there all night, sicne she found out the reason we were being admitted. She pulled the chair right up to me in the bed and said "I know exactly what you are going through. My eleven year old son is on Elecare. I've been through all of this and know what it's like!" I was SHOCKED. She said her resident on that day was thisclose to graduating and being a doctor and she was lucky to have her that night because she was so good. Being that the resident and I got everything nearly cleared up, this gave the Pediatrician and I some time to talk. I can't even explain how good it felt to talk to a DOCTOR who knows what we go through! She was my life saver that night. She said she wished she was on for the entire weekend because she considered Kara "hers" and wished us the absolute best.

Kara and I slept until about 8:00 the next morning, since it was basically four a.m. before I fell asleep. We had a day of doctors and nurses and the GI team come in. The day pediatrician was amazing as well. He reminded me of one of my Uncles, who absolutely adores little kids! He let me know to let them know what we need, that I was running the show. She could try a bottle later on in the afternoon if she wanted to and we would see how she did throughout the day. We rested, colored pictures, played in the bed a little bit and rested some more, as well as had a little bit of company. Kara had a few more icky diapers but her tummy settled down pretty good. By Saturday evening she had taken her second bottle, drinking about half of each one. She continued to have a few minor episodes but I was fairly confident we could go home the next morning. She tends to need about 24 hours of nothing by mouth and then we seem to be able to slowly add formula and then foods again.

Sunday morning the GI doctor came in adn said she was probably ok to go home. He explained that we may see some diarrhea here and there as she continues to get better so not to be alarmed. They paged the peds team to come in and discharge us, and we were out of the hospital at 11:00. Kara was so excited to have her IV out, and get to go home and see her Brenna!

Tuesday, December 20, 2011

Family Fun

I've been meaning to get on here and update over the last few weeks but Kara had been doing so well, that I really didn't have much to update on! No news is good news, right? We made it about three weeks with no travelling and Kara was successfully able to tolerate potato and sweet potato! We had a wonderful Thanksgiving and most recently, made a trip to the cities for a fun, family trip.

We received a gift certificate from the local Holiday Inn Express for our family down in the cities to use for a trip down there for fun when they donated water park passes to Kara's benefit. Realizing earlier last week that it expired at the end of the year, we decided that last weekend was the perfect time, before the crazy holidays start, to take this trip! We had our shopping done early, Kara had been doing great, and we were ready for a little family vacation!

We left Thursday afternoon. We got a later start because everything was taking longer than I had anticipated. We finally were able to pick the girls up from daycare and head out! We were about ten miles down the road when I realized I forgot the girls swim suits and we had to run back to the house. We turned around and not too much after that Kara threw up! She ended up fine, I figured it was from her sticking her fingers in her mouth and gagging herself. (she ALWAYS has her fingers in her mouth!!) We ran in the house and got her cleaned up and then once we were convinced she was ok, got back on the road again.

Friday we had a wonderful day. We got to the Children's Museum right as the opened and spent a few hours there. I think we all had a lot of fun there! The girls were pretty amazed at all the cool things there was for them to do! After that we decided to go to Mall of America. Both girls napped in the car during the short ride there but it was enough to rally them for the next stop! We walked around and decided to go to Nickelodeon Adventures first, to wear them out. We were checking out the ride prices and a guy stopped us offering us a ticket with 100 points on it for less than a quarter of the price so we took him up on it! Little did we know how long it would take us to use up 100 points! The girls went on ride after ride, loving all of it! We used up our tickets, finally, and decided to go back to the hotel. I think Brian and I were more tired than the girls were!

We had a great time and created lots of memories that day. We were thinking about heading to the Holidazzle Parade or just staying in and ordering pizza. We were all pretty wiped out and Kara was  feeling a little off and clingy but seemed ok. She barely had an aappetite all day so that was a little concerning and we were noticing her bright red cheeks, but with how sensitive her skin is, it doesn't take much to flare it up. We got back to the hotel and our sleepy girl was pretty lethargic. We laid her down on the bed to change her diaper and I noticed that her eczema looked awful. I had no bendryl with me (will I EVER learn???) and set her up to watch Caillou on the computer while Brian went to find a Walgreens to pick up some Benedryl. Little did we know what the rest of the night was going to bring!