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.
Showing posts with label vomiting. Show all posts
Showing posts with label vomiting. Show all posts

Friday, January 28, 2011

Reaction

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!

Tuesday, July 6, 2010

Getting By

In the days following we very slowly and very cautiously started trying more foods with Kara, scared out of our minds. We found she was able to tolerate wheat and barley just fine. She was also able to tolerate bananas, applesauce and pears; carrots, sweet potatoes and peas. I think we stuck with this diet for quite a while because it was simple enough and it was safe.

We ended up seeing her family doctor for one reason or another shortly after her gastro appointment. I asked what our next plan was. We decided that it was probably not necessary to see the gastro doctor at one year since we didn't gain anything by seeing him in the first place and that at one year we'd go see an allergist instead and go from there. We had our safe foods list and just worked on getting Kara to get other nutrition other than breast milk alone.

In the next few months Kara had quite a few episodes of dehydration. It seemed that as soon as she got sick, she was down for the count. We had a few times where she required IV fluids and getting an IV started on her was a horrible battle! She also had random episodes of vomiting and diarrhea but we were never able to pin point exactly what caused it or what she had to eat. We just hung in there waiting for her to hit that one year mark so we could go for additional testing to figure out what was wrong with our poor baby!

Thursday, July 1, 2010

Her Story

Kara has always had sensitivity issues, since being only weeks old. I remember bringing her into the clinic at about 5 months old when she was broken out in eczema pretty bad. The only thing different we had done was give her a small amount of rice cereal for the first time. We were told to stop and try again in a few weeks so at six months old we attempted the cereal again. She gobbled another small amount down and we were on our way, as we had an event we needed to attend that night. Kara started acting really strange about an hour later, very lethargic and a little fussy. Shortly after that she really started acting funny, like she wasn't quite with us. I remember holding her up saying her name as she vomited a very large amount all over me and seemed to pretty much pass out. I panicked, trying to get her to come out of this and she proceeded to do these vomiting episodes 3 or 4 more times in the next 20 minutes or so. At that point, I grabbed Brian and we were on our way to the ER. They observed her and decided that it was a vesovagal response to the vomiting, educated us on dehydration signs and sent us on our way telling us not to try the rice again for 2 weeks and see what happens.

At Kara's six month check up we brought up the rice incident and were told that rice allergies are almost unheard of and it was probably a fluke thing. Two weeks later we tried it again, Kara took the cereal just fine, loved it in fact. She seemed to be doing OK so we put her to bed for the evening. Shortly after, I heard awful screaming coming from her room. I ran up there to find my poor baby covered in vomit. Head to toe, soaking her hair, her entire crib mattress. I yelled for Brian, we started cleaning her up as she heaved and vomited more than ever thought possible. We didn't rush to the ER this time, as they didn't do much to help us the first time. I held her over a towel as she vomited and tried to make her comfortable, watching her so she didn't completely pass out. Again though, she wasn't quite "with us". I don't know how else to explain it. We had an appointment with her family doctor the next day where it was decided to try oat cereal.

Oat cereal proved to do the same thing to my poor baby. The screaming from her bedroom to find her covered, once again, head to toe. Exact same reaction and back to the doctor.
At this time we switched doctors for Kara to the one that Brian's family doctors with in case we were dealing with some of the same issues they have. He has a strong family history of celiac disease. This threw us for a loop because celiac's CAN have rice so our doctor started doing some research online while we were in with her. She came across something called FPIES - we read the description together and it sounded exactly like what Kara was going through. She decided we needed to be seen by a pediatric gastroenterologist as soon as possible.