Wednesday, February 6, 2013

Day 59-65 "What is anaphylaxis"

All parent's of young children living with a life threatening food allergy live in a constant, round the clock state of fear. Fear of the unknown, fear that our children cannot communicate their immediate needs and symptoms, and fear of putting anyone else in charge of managing this extremely dangerous allergy. Releasing control and delegating responsibilities is definitely where I struggle the most because, for me, handing that over to another person can be the biggest mistake I make.

I'm not at all worried that a caregiver would not follow our rules and feed my darling junk food or too much sugar, let her watch too much TV, not use her manners, or let her negotiate her way on everything--- like most parent's would be concerned with. I'm worried that they might misread an ingredient, and show up at my house with cow's milk proteins lingering on their body or garments. I'm worried that they are oblivious to the MANY different ways that milk proteins are present in our environment, and therefore subject my baby to life threatening dangers. The worst feeling in my world is giving trust to people under these circumstances. Over time and adaptation of thriving under a milk-free microscope, the ability to constantly look out for milk and be aware of its presence becomes second nature. It is not the norm to have this ability and so therefore releasing responsibilities and giving them over to the normal mindset of others is terrifying! After all, I have this down to a science and I am not perfect soo I see the great margin where room for errors are.

In my experience, I have found that there is vast confusion on the matter of food allergies. I've heard people explain food allergies in their lives, and the lives of their friends and family, on a scale from very mild to life threatening. Based on their experiences they place their value on what food allergies mean to them. Obviously a mother who has saved her own child's life with an epipen has a high value, just as someone who's only seen a mild rash has a different, much lower value. This "value" really stands out to me as a problem. I recently read a FB post in an allergy community that I belong to asking "how do you know if your child is anaphylactic?" I realized that anaphylaxis is the value NEEDED to be placed on food allergies in order to get proper attention for safe management.

I really want to address the need for the value of anaphylaxis. When your body does not tolerate something and tries to fight it, you produce histamines to try to get rid of it. This huge release of histamine causes a variety of symptoms for instance: itchy red swollen bumps, low blood pressure, constriction of blood vessels, red patches, puffy eyes, sneezing, congestion, watery eyes, difficulty breathing or complete loss of ability to breath, heart failure, diarrhea, and/or bloody stools. These are the most common symptoms and they are ALL symptoms of anaphylaxis.  Not every anaphylactic response is life threatening, but to judge each one by adding a value component to it is wrong to do because the severity of allergic reactions can be a slippery slope. Symptoms don't all present themselves immediately and reactions can last days getting more severe within minutes. Another component is that it is not possible to understand without comparing the same of something to the exact reaction to it. When it comes to lingering milk proteins that are invisible, how can you know how much you have been exposed to, and of which protein: whey or casein? All of this matters inside the body-- we just cannot see it to comprehend it. Another component is that food allergies can be progressive gaining a severity over time after repeated exposures. It's a compounding response that, again, is unmeasurable and not easy to predict. Consequently, there is a blood test that measures the histamine response to a presented allergen variable and determines the "value" of the response. We had this test at the NYC Mount Sinai Children's Jaffe Institute for Food Allergies and they valued our daughter's allergic reactions to have a life threatening "value."Nonetheless all of her allergic reactions have been anaphylactic and deserve appropriate respect.

I take food allergies very seriously and I wish everyone did. I know my daughter has potentially life threatening anaphylactic reactions that go on and on for days while her body tries to get rid of the milk proteins. I think it is good reasoning to treat all food allergies with respect and concern. We should NEVER underestimate the severity of a food allergy. I value ALL human life and I think it is terrible to undervalue something so real and life altering in another person. Anaphylaxis shouldn't have to be the value given to raise concern. There's always a first time to have a life threatening reaction and too often it could have been avoided if the warning signs were properly validated.

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