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, July 14, 2010

Feeding Issues

When Kara was about 11 1/2 months old I stopped nursing. I was going to keep at it for as long as I could but with summer approaching, still pumping twice a day at work and an active baby that was losing interst, I made the decision to wean her, slowly though since she'd never had formula before. This process went extremely smooth, she never missed it and drank the formula with no problems at all. We were still struggling with getting her to eat though and had a referral in place to go to the feeding clinic at Children's to see if her issues were deeper than we thought. At dinner time one of us would end up in tears, either Kara, or I - it was so frustrating trying to get my baby to eat! She would turn her head in her high chair, cover her mouth and cry. I would be holding her head and hands while trying to literally shove a bite of bananas in her mouth because I KNEW she liked them! Once I would get the taste in her mouth she'd take a few bites and then stop again. We'd once again, resort to the bottle as her nutrition.

The process for getting into the feeding clinic was a long one. I received a packet of info in the mail that I had to fill out about Kara and her history. We had to do a 3 day food diary of everything that she ate and the exact amounts that she consumed along with the behavior with the meal. By the time we got this paperwork it was like something clicked in her. By day two of the food diary she didn't appear to have any feeding difficulties at all. I spoke with her doctor and we decided to hold off on the feeding clinic for now but keep it in mind for down the road if these problems came up again.

From the time Kara was 9 month until 12 months she had dropped from the 60th percentile to the 20th for weight. She had random vomiting episodes and really nasty diapers almost daily. At her 12 month well child checkup she was really sick with a nasty flu bug so everything was put on hold. We needed to get our poor baby healthy before we put her through anymore testing so we had a follow up in 2 weeks. We had a few things in mind to discuss at this appointment - the diarrhea, the vomitting, this harsh cough that she always seemed to have and the big, wet burps that she'd started having. We started discussing her possibly having reflux and went back to that "possible" dairy allergy. It was decided at that time to start her on soy milk and run the RAST test for allergies again before we went to the allergist. Her rast test showed an increase in the dairy levels, the peanut was the same so we now had a positive dairy allergy. We ended up back at the doctors office about 2 weeks after switching to soy because the soy wasn't working at all. Her vomitting had stopped, all the signs of reflux had stopped but in this time she started getting diarrhea again, she would no sooner drink a bottle and it would run right through her. We were told to start Neocate Jr. as her formula so she could get some sort of nutrition and hopefully maintain her weight instead of all this dropping in the charts. Our allergist appointment was scheduled for two days later.

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