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!!!

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