Thursday, August 31, 2017

Life as a food allergy family

See that excited, book-bagged, 5-year-old up? That's our Elias. On his first day of Kindergarten. On his first day outside of the bubble of safety we've kept him in since he was diagnosed with life-threatening peanut and tree nut allergies at the age of 15 months. And don't think we stayed inside and never left our nut-free home. We just learned how to protect him, what measures to put in place, where to eat and not eat, what to eat and not eat, how to read labels, how to know what labels to trust and which ones to not trust and over time, how to accept our new normal.

And as of July, it's an entirely new normal now that we are in the public school system. We've had to teach our 5-year-old child - a child - how to advocate for himself. How to tell strangers or less-familiar adults if he feels strange or concerned. How to not touch his face for his safety. How to only eat what he knows came from our home. How to not touch surfaces. How to wash his hands properly and often. How to trust in those we tell him he can trust. How to not feel different. How to accept that he can't eat what is brought in to celebrate during class parties.

And further --

How to trust in a school system that's throwing around 'evidence based' research as their guidelines for managing food allergies without being able to back that up with scientific studies or documentation. How to trust in a 'health plan' that is meant to 'protect all students' but, in truth, isn't set up in a way that protects those with very severe allergies - like our son's - to the maximum extent possible. How to deal with being told 'no' when you and your doctor are requesting measures that go above their 'guidelines' for the county. How to show the school that you love that you trust them, but you don't trust the system. How to effectively convey to your son's teacher what a life-threatening reaction may look like - even though one reaction can never be a true indicator of a later reaction. How to say goodbye each morning praying that today isn't a day that your phone rings with bad news.

As his parents, we know the weight of his diagnosis. We know that his allergen could kill him. Kill. Him. A food. It could kill our child. And as a child, I think he understands the severity even though we don't talk about death with him in those terms. He's a child. He shouldn't have that weight on his small shoulders. But he knows what's going on. We have to balance our worry and concern and fight for him with remaining calm and positive in his presence. We don't want him to be scared of dying. But, at the same time, he needs to know the severity of the situation. And he has to advocate for himself. At age 5. I just wish he could be 'just a kid' and not worry about these things.

The fear of every cough. Of every meal. Of every hour. Of every surface. It wears you down. It's all-encompassing and exhausting - but it has to be if we are doing our best job to protect him. He deserves that.

It's hard to explain to others. I didn't know myself until I was forced to find out. Elias would develop hives often as an infant because his older brother and myself ate peanut butter daily. We were sharing living space, toys, a home. There was residue that we couldn't see and didn't know to fear. When he first directly touched peanut butter, he broke out in large hives from his elbows up to his mouth. And later, at age three, he had an anaphylactic reaction.

I try to not think through the events of that day because it haunts me. What started as a nagging cough turned into his airway closing. Hearing the wheezing and stridor. Hearing him lose his voice because everything was swelling. Giving him the life-saving epinephrine and rushing to the ER. Operating in robot mode because you don't really want to think about what just happened. But it did. And it does.

To those reading, if you get a letter home from school that there's an allergy in your child's class - please, take it seriously. Read it. If it's only requested that you not send in the allergen if possible (which is the case for us), please don't send it in. Let these kids be kids and do their math centers and science activities without their allergens (invisible in many cases) on the surfaces. Let them be kids. Let them learn. Let their teachers breathe a little easier knowing no one sent in a 'deadly' snack that day.

Because the truth of the matter is, children like Elias do not have to have some visible piece of their allergen on their hand and put it directly in their mouth. It can be residue on their hands from a block or table and they scratch their eyes. Or, yes, pick their nose. Or wipe their mouth. Or not wash their hands as well as they should. I know, it's hard to fathom. Trust me, I get it. But it's our reality and the reality of thousands of others like us.

Here are the facts --

  • Nearly 6 million children in the U.S. – which equates to 1 in 13, or roughly 2 in every classroom – have a food allergy.

  • Studies indicate that 16-18% of school-age children who have food allergies have had a reaction in school. In addition, in approximately 25% of the reactions that occur at school, the student had not yet been diagnosed with food allergy.

  • Studies have shown that conventional cleaning methods are effective in removing the protein of a food allergen such as peanut. Bar and liquid soap is effective for removing protein from your hands, while alcohol-based sanitizer is not, according to a study published in the Journal of Allergy and Clinical Immunology;. That study also showed soaps and commercial cleaning agents effectively removed peanut protein from tabletops, while dishwashing liquid alone did not. 

  • According to a study of anaphylactic events that took place during the 2014-2015 school year, almost half occurred in the classroom at a rate more than double that which occurred in the cafeteria. 2,191 anaphylactic events were reported, the majority of which occurred in the classroom (46.6%), followed by the cafeteria (19.9%) and the playground (9.7%).

So, your child eating a yummy peanut butter dipped granola bar in the drop off line, then coming into class without washing their hands could harm my child - or others like him. Yes, I'm serious. I'm not being dramatic. I can back up the facts above with published studies, which I can't say for our school system thus far.

Until we find a way to get proper accommodations in place in an effort to protect Elias at the very maximum extent possible, I'm going to keep going. Talking. Advocating. Creating awareness. And I'm going to keep worrying now. And, honestly, even when we find a way to make his school experience as safe as possible I'll keep worrying. Because that's my job as his mother.

I'll ask you what your child has in their hands at the park. I'll ask what's in your snack bag if we are beside you at a school picnic. And I'm not a helicopter parent. I'm trying to keep my child safe, well and alive.

That's my job. That's our job as his parents. To fight for him. To give him the best tools you can give a 5-year-old to protect himself. And to pray for his protection.

And to love him and his brothers with all we have. To treasure each moment. To empower them. Educate them. Let them be kids. And pray we are handling it all ok. Us allergy parents are doing our best here to deal with our reality. And for us, we are trying to come out stronger for it.

So far, so good.

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