Food Allergy Awareness: Our Story Continues

It may not be common knowledge, but the month of May is Food Allergy Awareness Month.  Okay, well, technically there is only a week legitimately devoted to it (May 13-19th this year), but nearly every other notable health condition gets an entire month.  There is no reason we cannot bring the same attention to Food Allergy Awareness.  Right?  It certainly deserves and demands the visibility.

Misunderstood Diagnosis

We have been in this particular “world” for over a decade and food allergies, which have grown exponentially over the years, are sadly and frequently still misunderstood.  They are not uncommonly ignored and are sometimes treated as if they are psychosomatic or hypochondriac-type illnesses.  It’s unfortunate, but some people simply have a very difficult time understanding how a tiny particle of food can cause so much damage to someone’s life.

Now, to the credit of others, there are more and more professionals (culinary and education, for instance) taking the time to train and become more familiar with accommodating dietary restrictions such as food allergies.  For that, our food allergy family cannot be any more grateful!

What exactly is a food allergy?

So, I guess this is where some people get just a little confused.  While there are those who have food sensitivities, others have full blown allergic reactions.  Sensitivities make you uncomfortable.  Allergies can lead to life-threatening consequences.  Needless to say, both need to be taken seriously.  No one wants to feel uncomfortable and no one wants to end up in the emergency room.  However, when an individual with an actual food allergy is exposed to a particular food, it can trigger a very harmful immune response.  Why does this happen?  The immune system sees particular proteins in food, which would normally be harmless to the human body, as foreign objects and ultimately attacks them.  This attack triggers various reactions, some of which could be deadly, causing straight up anaphylaxis.

Now, let me clarify something.  I mentioned sensitivities up there and contrasted them a bit with an actual allergy.  Sensitivities and intolerances DO NEED TO BE TAKEN SERIOUSLY, as well.  I am not discounting them at all.  I, myself, have very strong sensitivities to certain foods and the discomfort is sometimes unbearable, so I do all I can to avoid them.  However, I will not end up with my throat swelling, unable to breathe or in the emergency room if I ingest any of those foods.  I think that’s the difference I’m trying to point out.

Recap of Our Story

Two years ago, I shared our youngest son’s story.  Really, it’s OUR story because we have been acquainted with this dangerous entity since our oldest son was a toddler.  We also faced minor challenges briefly with our middle child, but have been consistently managing food allergies in our family since our youngest was born, over 12 years ago.  While the oldest grew out of his food allergies, as did our middle, our youngest has had to struggle.

If you read our original story, you know we spent the first year of his life fighting doctors and battling doubt.  As he reached school age, he was bullied by a teacher and alienated by his peers.  He has had to go through life watching everything that goes into his mouth, learning how to read labels, sanitizing most of what he touches and staying hyper-vigilant when he is in crowds.  The list of his allergies started off vast, but has, over the years, dwindled.  However, those that remain are very severe and have caused him many a problem from time to time.

What Remains The Same

Since the original blog post two years ago, a lot has changed, but has lot has also remained the same.  It goes without saying that we are obviously still managing food allergies on a daily basis.  We remain diligent in our efforts to keep our son alive and enjoying life.  His RAST numbers (a test that evaluates the blood for specific IgE antibodies) remain high as of last summer for eggs, peanuts and tree nuts.  We also continue to avoid foods that have disclaimers on their packaging, as they have been known to induce reactions in the past, even as recently as within the last year.

We continue to carry epinephrine auto-injectors (at least two) and an antihistamine wherever we go.  His bag is always stocked with baby wipes and alcohol wipes to clean surfaces and as a quick hand-cleaning remedy.  He continues to wear gloves when he is going to be touching something that is questionably contaminated, though he has become more and more conscious of washing his hands after an activity if need be.  My husband and I continue to contact hotels, attractions and restaurants before we venture to visit to ensure safety measures are in place or that they are able to accommodate his dietary restrictions.

It’s a lot of work, but he’s worth it….every single phone call, every single question, every single precaution taken ~ he is worth every second of it.

The Changes

The changes in life have been a little more extensive.  At the end of last school year, we made the decision to return to homeschooling.  While he had a good two years at the private school and we did avoid any major reactions, we were beginning to see a slack in concern, a little bullying starting to rise and a disconnect with communication between teachers, administration and me.  The purpose in sending him to school was to grow his social presence.  That wasn’t happening.  While he is one of the strongest kids I know, he was beginning to feel a little distracted by what was going on around him.

In the meantime, as this was all beginning to unfold, we found out that there was also the potential for another big move.  This brought us to the point of evaluating finances and determining whether it was worth the expense to keep him in a private school.  There was no doubt in our minds that he would not be attending the public middle school, as it was attached to the high school and we were not comfortable with their food allergy practices.  It was a perfect option for our middle son, but not for the youngest.  So, with all that was going on, homeschooling just seemed to be a good fit.  He was on board 100%.

Braving Another Move and School Year

The move eventually did take place and homeschooling moved right along with us.  Once we reached our new home, however, our son wanted to test the waters at the local middle school.  We respected that, did our research and worked out a “shadow day” with the guidance counselor and one of the principals.

Unfortunately, that turned out to be less than impressive.  For a kid who loves a challenge and wants to get out there, he felt rather unsafe and was not interested in weathering the storm on this one.  He wanted to learn and didn’t think the environment was going to be conducive to such.  He didn’t want to spend his time worrying about where to sit at lunchtime, battling a teacher over food in the room or getting bombarded by questions from students who didn’t understand why he had to wear gloves during a particular activity (we did get him some really cool gloves, though).

Instead, we continued to investigate our options.  Fortunately, our state has a virtual school connected to the public school system.  We made tons of phone calls, did our research and found this to be a very viable option for him.  Since incorporating this into his schedule as a homeschooler, he has been doing fantastic!!   It fits his learning style, keeps him safe, teaches him to communicate on the phone with regularly scheduled calls with his teachers (a foreign concept to our youth these days) and offers collaboration opportunities.  It also enables us to work on other skills here at home that he would normally be hesitant to do in a middle school filled with hormonal tweens and teens still trying to find their own place in that environment.  This doesn’t work for everyone, but it works for us!

The Future

The future looks good, but there will always be some level of anxiety for us (particularly me).  As he gets older, he is picking up more and more chores and tasks that challenge him to think about how he needs to protect himself in the face of an allergen.  Washing dishes and taking out the garbage are two examples.  He is finding his niche in school and growing by leaps and bounds.  He is extremely happy in our new location and is finding many opportunities to get out and socialize.

We will continue to travel and continue to share our experiences.  We will continue to homeschool for another year or two, as we begin to contemplate and prepare for what high school may look like (be still my beating heart).  Our family will continue to try new recipes, pray for healing and go through allergy testing each year to see where he stands.

The Goal

We will also continue to research, educate and train ourselves on how to allow our son to become more and more independent as he gets older.  Our goal is to raise him so that he is fully capable of taking care of himself without having to remind him to wash his hands, read the labels, wipe down that table or pack his epinephrine auto-injector.  Oh, that day scares me…but, we are working together as a family to ensure that he does the best he can or is at least the best prepared he can be for any potential issues that may arise.  At one point, he has to be responsible for his own decisions ~ as much as that pulls at my momma’s heart.

The point is….life is going to go on whether our son has food allergies or not.  There is so much he CAN do and he only has one life to live.  We would rather focus on the CAN versus the CAN’T, creating as many positive memories for him as possible.  Sure, we have to make adjustments and be diligent in our efforts, but we want him to enjoy the best life he can, smile as much as possible and experience everything life has to offer.  Fortunately, we are on a good path right now.

What can you do?

I get this asked of me all the time.  What can we do to help?  How do we become more attentive and learn how to protect those with food allergies?

The best thing to do is get or stay educated!  Be alert, be attentive, be understanding.  Food allergies are more serious than many people believe them to be.  The smallest particle of an allergen can send a person to the hospital, or worse, take a child away from his or her parents.

Learn about the Top Eight, cross contamination, food prep and how to administer an epinephrine auto-injector.  Most of all, respect the situation.  Don’t judge when you see a family bring their own food to an event or party.  Listen and be more compassionate when someone asks you to consider removing a certain allergen away from them or from the table.  Put yourselves in their shoes for just that brief moment to understand that all they are doing is trying to protect the life of someone they care about.

Overprotective ~ Yes!

The complaint is that we’re being overprotective parents.  Well, yes ~ my son’s life is on the line here.  However, I’m working hard to teach him how to be more independent.  I’m not coddling him.  I’m teaching him and, while he is still young, I have to be his main protector.  Independence comes with time.  It doesn’t happen when they are three years old.  They are in the learning process, as well.  Most importantly, however, they will continue to need our support, love, encouragement and positive presence throughout their lives.

I pray we don’t have to deal with food allergies his entire life.  I would also never wish this (or any life-threatening, life-altering medical condition) upon any individual.  It is not an easy road to travel.  In the meantime, however, we will continue to learn, protect and love him because food allergies do not define him.  They simply challenge him (and us) to appreciate life moment by moment and to protect the one life he was given to the best of his (our) ability.

---

For more information on food allergies, feel free to visit the two sites below. 

• Food Allergy Research and Education
• AllergyEats (great resource for finding accommodating restaurants)

As an FYI, I am in no way affiliated with these sites and benefit nothing from sharing their links.  I have simply found them very helpful in our research and support measures and would be remiss if I didn’t share them with you.