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.

Sunday, July 23, 2017

Going to Kindergarten -- With Life Threatening Food Allergies

Well, here we are. And here I am -- pouring my thoughts and heart onto a screen, in the hopes that it helps to settle the storm brewing within. And maybe along the way it'll help someone else out there, too.

This is it. Elias starts Kindergarten next week. I knew this day was coming. It's been in the back of my mind for months. And now the time has come. I have to let go, y'all.

I remember dropping off my anxiety-prone Asher at Kindergarten the first day, his tears flowing. Mine flowing in the parking lot for a good 20 minutes before I could drive off. I remember thinking, I am leaving my child in the hands of strangers, in a new, big place and just trusting it'll be ok.

This time, I'm the one that's anxiety-prone. And this time, my child has life-threatening food allergies. This is a new kind of trust. I don't have to just trust the teachers (no longer strangers) and the familiar building with familiar faces that love our family. I have to trust the system. I have to trust that the measures we were allowed to put in place to protect him will work. I have to trust that his oral immunotherapy for his most severe allergy to peanuts will protect him. And try to ignore that his newly positive results for tree nuts could come to haunt me.

Here's the thing. He's five. And he knows that he has an allergy to food. He knows that it can make him really sick, or land him back in the hospital. He knows that he has to ask about everything. He knows he has to watch what's going on around him.

But he's FIVE. Five years old. Five year old's should not have this weight on their shoulders. He should not fear food. He should not fear death. He should not be afraid of every cough and ask if there are 'hidden peanuts' wherever we are. He should not have to worry about these things. And he most certainly shouldn't have a list of responsibilities he, himself, has to do to protect himself in a school setting. But he does. All of these things.

And it breaks me. Breaks. Me. But I can't let it break him. And he won't let it break him. He's one of the strongest, most verbal and brave kids I know. Even if he doesn't realize how brave it is that he's been eating something that could kill him for three years now. He knows when something feels off, and he asks if he's ok. I will ask "Are you ok, Elias?" after his daily peanut dose and he'll reply "I'm not having an allergic reaction, Mom." No child should have to say these things. But so many do. And it's just heartbreaking.

Rewind back to being an infant and getting random hives, fairly often, when Asher would eat peanut butter. And to his first 'touch' of peanut butter resulting in serious hives. Rewind back to his first bloodwork being 'high' at '13'. And within a year, going up to '89'. Rewind back to this fall when it dropped to '23' after OIT (hooray!) but still very, very high. And rewind back to the component testing telling us his dominant reaction is anaphylaxis. But, I could have told you this myself.

After sailing through a year of OIT without so much as redness or cough, he went into full blown anaphylaxis after his daily dose at home. What started as a nagging cough, progressed to his airway closing. It was not during the usual 15-minute window of a 'typical' reaction. It was 45 minutes after eating his dose. He was not sick. It just happened. And it was a horrific reminder that he's still very much allergic.

I know that he can tolerate 2.5g of peanut today (about 2 big peanuts) without issue - so long as he isn't sick, overactive or fighting off an illness. But what I don't know is how his body is going to respond to peanut residue around him daily, for hours. In addition to activity, all the germs his body will be responding to. I don't know, yet, that he's going to be ok.

I don't know that his classmates are going to be sympathetic or not. I don't know if he'll develop friendships where the sweet kids ask their parents to not pack peanut butter so they can sit next to him at his 'designated' seat at the lunch table. I don't know if parents are going to read the 'severe allergy in the class so please don't send in snacks with nuts' and take it seriously and not send in nuts. I don't know if having an alternate 'treat' at all the class parties is going to make him sad. I don't know if those around him will recognize his symptoms if he does react. I don't know if he will speak up the way we've taught him to. I don't know if his lunch box that turns into a placemat is going to be sufficient. I don't know if he'll remember to wipe his hands, or wash them, or do it sufficiently before snack and lunch. I don't know if the crowded classroom and his accommodations are going to be an extra burden on his teacher. I don't know. I don't know. I don't know.

But here's what I do know. The Lord is a shield around him. And we've done all we can do to get accommodations in place to protect him. And we're going to keep pushing for further accommodations. I'm going to keep speaking up and advocating. I'm going to maintain a close relationship with his teacher and do anything and everything I can to help her. He'll have Asher, his biggest and best advocate under the same roof, and at lunch and during recess. And I'm going to be a wreck for the next...well, always. He's leaving our bubble, and he's out in the great big world. And I have to be brave for him. And I have to trust. Trust in the change, in the process, in my little boy, and those caring for him.

At the risk of this post getting super long, I feel the need to point out somethings that I've noticed by being involved at our great, little school for the last two years and by being a part of several local allergy online communities. The kids were playing in peanuts at the fair field trip under the bleachers. Asher was the only one who noticed. And I worried about who may have an allergy and for those that may have an allergy in after school care or back at home, with the residue that was surely on the clothes of those on the field trip. I noticed that the dress up clothes in our relay activity at the neighboring park were laying among pecan and walnut shells. I kept an eye on the kids, wondering if anyone was allergic. I wondered where the teacher was with the epi pen bag. I wondered if anyone knew the park was loaded with these trees and how Elias would react (if at all) in the same scenario. I know the story of a Kindergarten student in Wake County that had an anaphylactic reaction at school from peanut butter smeared on the bottom side of the table, and then the administrators didn't administer the epi pen correctly (holding for 10 seconds) and he had a second reaction later that evening, worse, with a trip via ambulance to the hospital.

I know these things. I know and notice these things because they are our life. Our every day. Our every moment. And I fully recognize that others, thankfully, don't have to think the way we do. But we do have to think this way to keep our child safe and alive. Alive. Yes, alive. I pray that anyone reading this that finds out there is a student in their child's class with a food allergy can think about how scary this is for the child, and for their family and the teacher. Take it seriously. Do what you can to help and include the child. I can promise you that it would mean the world to those of us that have this heavy weight on our shoulders every day. Every hour. Every damn minute.

We have a health plan in place for Elias. To say I'm satisfied with it would be a lie. I'm not. The Wake County School System has a system that allows me to 'select' which accommodations I want in place for Elias. There was no option to deviate from these options, or add anything in. I had my choices, as passed down from the attorneys as satisfactory for a 'community environment'. There are options that were once allowed that are no longer allowed because they are a disruption to the day.

Because I'm not the type to just accept what instinct tells me is wrong, we are pushing further. We will be setting up a 504 plan for Elias. This is developed to ensure that a child with a disability receives accommodations that equal academic success and access to the learning environment. Life-threatening food allergies are considered a disability as they impact breathing. The whole situation is really unsettling, as some schools in the WCPSS seem to set up 504s for many with food allergies and others push back against it, and say to rely on the health plan. By law, Elias is entitled for a 504 plan and this holds the school accountable to the Federal Government to meet reasonable accommodations for him. In short, a 504 plan potentially trumps what the Wake County attorneys give me as options for keeping him safe.

And honestly, I'm willing to sit down with each of these attorneys and give them a little lesson on food allergies and how severe they can be. I am willing to talk to anyone and everyone. I'm willing to go the entire mile to get safer accommodations into their computer program of 'options' for the health plan. I want to make it easier and safer for other food allergy students entering the school system.

Now don't worry, as I told Rusty, I'm not trying to have a heli-pad installed on the playground in the case that Life Flight may be needed. I'm seeking reasonable additions to his health plan, for his safety. For, potentially, his life. And it seems, from what I'm told thus far, it's going to be something that needs discussing beyond our great school nurse and staff. It's going to have to go higher up the chain. And I'm ok with that. I just know it's going to be a long process, and until then, these measures I am requesting won't be in place.

What follows are some of the options I 'chose' for Elias from the list in the system, and what I'd like to see instead. Please note, from what I'm told, these are across Wake County. Some schools and teachers may go the extra mile and deviate from these options, but apparently that's frowned upon as these are the measures set forth by the attorneys for the safety of everyone. And going outside of what's in the health plan is not allowed.

  • He will sit at the end of the lunch table every day, and without reading labels (because of liability) those on cafeteria duty (not his usual teacher who knows him best) will create a buffer beside and across him of students that don't 'appear' to have nut products in their lunch. PBJ is offered at breakfast and lunch daily. Kids are messy. His space and seat will be wiped down with water and a paper towel prior to eating. Water does NOT remove nut proteins. And I'm trusting that someone remembers to do this every day. He's not allowed to wipe his own space because it makes him more likely to come into contact with residue. He will bring a place mat to eat off of, and bring his own trash home daily. So, we're about to find out how well a place mat, a water smeared table and a five-year-old in a busy cafeteria equal safety. According to what I'm told, the tables are only wiped with water until all students have eaten for the day. A. This is gross and unhygienic. B. Again, water doesn't remove nut residue. But the attorneys determined this was my option. I'd like to see the table at least wiped with a baby wipe or soap and water. The concern, I'm told, is that harsh cleaners can trigger asthmatic reaction or contact dermatitis in other students. I'm all for keeping everyone safe, so seriously soap and water would do the trick here. And soap and water would have the added bonus of removing germs.

  • He will not be allowed to use any food-based items in learning activities. I'll work with the teacher to provide similar non-food options. Why do we need food-based learning if there are non-food alternatives? When I asked how it's supposed to be so much safer for him to use 'plastic beads' instead of some 'cereal' when everyone else in his classroom has said 'cereal', I was told at least this reduces his direct contact some. Um, ok. I'd love to see food out of the classrooms (I'm sure I'll get some groans from this.). But really, do we need food to learn? Do we need sugar and junk for every student's birthday? Especially when there are multiple students being excluded from said activities because of food allergies or sensitivities? A teacher friend of mine said she'd love to be told that food must be removed from the classroom. She said it would limit disruptions and make things just plain easier. This is a much bigger issue, and won't be a part of my 504 requests. But, just throwing it out there that constantly excluding a child is not inclusive. For something that isn't needed. We can learn and celebrate without food. #steppingoffthatsoapbox
  • A letter will go home to his classmates stating there is an (anonymous) student in the classroom with severe allergies to peanuts and tree nuts - requesting  they not send in food with these ingredients. Our school is pretty unique -- and part of the reason I love it -- in that class sizes are small, and each grade level is in one large classroom that's subdivided into three class spaces. There are no walls. There is a lot of moving from one space to the next. And snack is eaten in the classroom. I wanted the letter to go home to the entire Kindergarten since they do share one classroom, but this was not an option. This is something I hope we can change. It is one classroom. With one entry. With one set of cubbies. With shared supplies. Kids are messy. And even if every parent in Elias's class happens to not ever send in a nut snack (which would be amazing), there will likely be nut snacks mere feet from him and in a space he may be watching a video in later that day. I just feel like it doesn't hurt to send the letter home to everyone given the nature of the classroom set up. We'll see how well that goes over. And again, this letter is a request. Wake County will not restrict any food.
  • All students in his class will eat their snack on a paper towel, Elias will be allowed to wash his hands prior to eating (or use a wipe) and will have a designated snack eating space. I'm not really sure what this translates to as far as if his assigned table mates bring a nut item to snack. And all supplies at the table are shared. So, his pencils and crayons are shared by students who may have eaten a nut-included snack. And even if his table is safe, kids are messy, they touch everything. Hand-washing by his classmates isn't an option after snack (or lunch) so to think that a paper towel will do much of anything to prevent residue spreading is laughable to me. And, teacher's can't read labels (or legally are not supposed to). But they have to somehow keep his table safe(r) during snack.
  • Which brings me to hand-washing. It was not an option for me to ask that his classmates wash their hands following snack and lunch. This has been an option in previous years, but not in the new system. The attorneys determined this was too much of a disruption - even for the new schools with sinks in the actual classrooms. So, this is no longer an option for any health plan in the county, from what I'm told. From my consultation with the Dept. of Education's Office of Civil Rights, an 'administrative' reason is not acceptable for not providing a reasonable accommodation under a 504. I am a daughter of a retired teacher. I know the work of teachers - and I personally don't know how on earth they do it. I truly think it's the hardest job out there. I don't want to add to their work in any way. But, isn't it a disruption when the entire first grade (like last year) gets wiped out by the flu and stomach bug? Hand washing is hygiene. I think it's smart to wash your hands before you eat regardless of a food allergy. And I'm not expecting the teacher who has her hands so full to remember to tell Elias to wash his hands before and after eating, or to use a wipe. So, that's going to be on him. And, obviously, kids could be totally terrible hand washers, but I feel like every little bit helps in more ways than just protecting against food residue -- it's good hygiene. In a perfect world, Elias's class (and every student in the building, honestly, would be able to wash hands prior to and especially following eating. With extra emphasis on the washing after eating in the classroom space during snack time.
There are lots of other great parts of the options we were given in the health plan creation. But there are some serious areas that are lacking for true safety, based on my experience in the food allergy world for the last four years. And many are just plain beneficial overall. I feel like for such a large school system (17th in the nation), we should be further along than this. Charlotte-Mecklenburg schools are nut restricted, which I recognize doesn't help with other food allergies. But science shows us that nut allergies are the ones that have the greatest likelihood of being life-threatening, and I applaud them taking that step to at least remove that one allergen from the school community. My friend in Michigan has nut-allergic kids, and their schools are all nut-restricted as well. I know of schools that don't allow food parties or food activities. So, I'm not coming up with something crazy and out the blue here. I have read horror stories. I've laid awake at night worried about the situation we'd be coming into. I am not as comfortable as I'd like to be with the measures in place for him. So, we will do what it takes to try to get it to be at least somewhat safer for him and others like him. 

The way his health plan is set up now, I know 100% that Elias would have multiple reactions at school without his tolerance built up from OIT. I know that. He is/was THAT allergic. I know that all reactions can't be prevented. I know we can't stay inside our nut-free home forever. We go out. We travel, we play and experience. But he's with US. We know him and his body. We wipe down surfaces with something other than water. We wash hands at appropriate times. We opt to go where we go and make sure it's safe for him. So sending him somewhere I'm required to send him, and trusting on what feels like a lackluster system is hard for me. Really hard. We are about to test OIT to its limits. And I'm going to hope and pray that those caring for him recognize symptoms, should they occur. That he speaks up. That they notice the nuts on the playground from the squirrels. And wash their hands after they eat their PB crackers. That they get him treatment in time. Time with an allergic reaction can mean life or death. I am going to stress to them all, if it seems like he may be reacting, epi him. It won't hurt him, but it could save his life. Don't delay. Don't doubt. Just do it. Because I know I would, and I did. 

So, for now, I'm beyond grateful for OIT and the progress we've made. I'm going to trust in the system, but more importantly trust in the loving people that will share that building caring for my boy. I think our little gem of a school is where we definitely should be. I know he will thrive. I treasure that little school. But I'm still scared. And I'm still going to push for what I feel is best for my child and his life. And spend the next 48 hours in denial that I'm about to have to truly let go. 

But, like I've always said, Let go and let God. 

The Lord is a shield around my son. 

We'll do what we can on our end to push for changes to his accommodations, and in the meantime trust in Elias and the wonderful people at school watching over him. And hopefully, good things will come of our pushing. And more importantly, Elias will remain safe and thrive in his new, big world.

Prayers appreciated. XO

p.s. If you made it all the way through this post, thank you. It was truly a mind dump of everything that's been weighing on me for weeks. And I just needed to get it out as therapy for my soul. 
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