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

An Answer!

On July 1st, we finally managed to get some answers!

Kara saw a pediatric allergist at St. Cloud CentraCare Specialty Center. My Mom came with Kara and I to this appointment because Brian was unable to. The doctor we saw was the answer to our prayers after our experience at MN Gastro, he was an older gentleman who came in the room and LISTENED to us. I explained how we went to see the gastro doctor in January and everything that we went through there. Kara played on the floor as he listened to everything of what we've gone through with Kara. Kara sat so nice as he checked her all over and asked us additional questions. He decided that he wanted to do the scratch allergy test on her back for rice, oat, dairy, soy, peanut, egg, and a few others. I think Kara had 12 pokes on her back total. She had one nice big hive other than the control, only to the dairy. No rice, no oat, once again. Huh.

The doctor came back in after the testing was done and told us he believes that Kara has two things going on. One is a definate dairy allergy. The other is FPIES. We finally had a diagnosis, and one that we had been questioning for SIX months, since our gastro doctor told us that she DIDN'T have it. We went over a plan of what we could and couldn't give her. We definitely needed to stay away from all products with rice and oat in them as the reactions that she'd had put her into shock. As for the soy and dairy we were OK to do trial and error to see the severity hoping she could handle foods with lower amounts of dairy and soy in them. We were told that the epi pens are going to be no good for the kind of reactions that she has and if she were to have an FPIES reaction, she'd need IV fluids before she got too dehydrated. We briefly talked about Kara being on Neocate and he thought she could maybe handle Nutramigen so they sent us home with samples of that to try.

I left this appointment breathing a HUGE sigh of relief. It was so amazing to finally have some answers to what has been going on with my baby. I was overjoyed yet I had to remind myself that what we are dealing with is very serious. At the same time I was angry. We had six months of struggling with Kara, all because the doctor we had seen in January didn't listen to us.
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