New Jersey was certainly a whirlwind. We flew out on Wednesday and came home on Friday. My biggest worry was how Carter would do on the airplane. We had a 45 minute flight and then a 6 hour flight. That’s a long time for anyone to sit in a plane, especially an almost 2 year old. I’m not bragging or anything . . . But he was amazing!! He LOVED being in the airplane. He didn’t throw a single tantrum about being confined to our laps and giggled through take off. He slept wonderfully and truly enjoyed the experience. When we woke up Saturday morning, Carter looked at me and said, “Mommy, Airplane?” I told him that, no, we were not going on an airplane today. He hung his little head and said, “Ohhhh”. I think we may have established a life long love for airplanes. I am so proud of him.
The doctor we saw was fully of experience and education, although she was short on time. They are now scheduling all FPIES appointments in the morning, but ours was made before this change and it was at 1pm. We didn’t get to spend much time talking to her, but she was able to put much of his story together from past cases. It was nice that the things we told her were things she had seen before. She is the first doctor in the 9 that we have seen, who has taken his lack of food digestion seriously. She gave us a sample of Creon, which is a digestive enzyme used in Cystic fibrosis patients. She suspects that Carter is lacking adequate enzymes made by the pancreas to help digest his foods. She also agreed that he is probably getting all of his nutrients from the formula and not from food. We were also told to start a probiotic, which we will begin today. Hopefully this will help balance out his gut and then we may be able to start passing foods again!
I asked about the respiratory reactions that we see in Carter and, although she has seen this in other patients, there is nothing that we can do for it other than treat the symptoms as they present. I have to remind myself that Carter is part of a very small, very rare group of children who are just bringing all of these issues to light in the medical community. They will not have answers yet, but they are acknowledging our struggles and one day, this will help so many other children. One day there will be an answer for his reactions.
Dr. J and I have already been in touch via e-mail and she was wonderful and thorough in her response. I am glad that we made the trek to get another expert on our side. But not the waiting begins. It will take a month to get the test results back, and hopefully these results will shine some light on the maze and help us find the best path the take to heal Carter.
:) happy for you!
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