As I sit in doctors offices and hospital rooms with my son, who has a severe Protein Intolerance called FPIES, I want to trust doctors. The very doctors who I know have my son's best interest in mind but also doctors who have no experience or prior knowledge with FPIES- or really anything like it. Instead, I have had to become knowledgable in FPIES, an expert in my son's illness.
What is an Expert? Let's start with the definition of Expert from: Merriam-Webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience".
Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes; from their experiences. To add to that, the parents of PI children quickly become experts in Protein intolerances. We have to, there is so little known. Yes, there are studies, but there is only so much everyday information that one can gather from these studies. At this time, the most I have learned is from other moms, found in online communities for support. We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.
I often ponder over what FPIES has taught me. Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer. But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies. About digestion and GI health. About food, and how it is made,processed and produced in this country. All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience. What I haven't learned first-hand, I have learned from other moms- with first hand experiences. Connecting all this together for real FPIES information, real help.
The doctors, who want to help by learning more, will rely on us. The parents living this diagnosis day to day, symptom to symptom. The medical professionals will be able to help us through this diagnosis with it's many ups and down and compounding ailments; but also to help connect it for other infants,toddlers, and children in the future of this diagnosis. Doctors, who are experts in infants and children and medicine can "connect the dots" quickly if they want to learn. When we can work together with the doctors, you can benefit your child and future children.
We are the experts, and the learning (and teaching) continues daily....
What is an Expert? Let's start with the definition of Expert from: Merriam-Webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience".
Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes; from their experiences. To add to that, the parents of PI children quickly become experts in Protein intolerances. We have to, there is so little known. Yes, there are studies, but there is only so much everyday information that one can gather from these studies. At this time, the most I have learned is from other moms, found in online communities for support. We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.
I often ponder over what FPIES has taught me. Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer. But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies. About digestion and GI health. About food, and how it is made,processed and produced in this country. All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience. What I haven't learned first-hand, I have learned from other moms- with first hand experiences. Connecting all this together for real FPIES information, real help.
The doctors, who want to help by learning more, will rely on us. The parents living this diagnosis day to day, symptom to symptom. The medical professionals will be able to help us through this diagnosis with it's many ups and down and compounding ailments; but also to help connect it for other infants,toddlers, and children in the future of this diagnosis. Doctors, who are experts in infants and children and medicine can "connect the dots" quickly if they want to learn. When we can work together with the doctors, you can benefit your child and future children.
We are the experts, and the learning (and teaching) continues daily....
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