Friday, August 8, 2014

It Takes A Team. The Super Awesome Food Allergy Super Team

As we faced our childrens' diagnoses of food allergies and FPIES, we found ourselves overwhelmed by the responsibilities of keeping them safe, making sure they are getting what they need, and pursuing the right medical care.  We learned early on that we needed to round up some pretty awesome people to make up our support team.  Like superheroes, they all have their own special superpowers and are just a call or email away.

The Pediatrician

Pediatricians see the "big picture" of what's going on with our kids.  Even though they don't specialize in food issues, they know normal childhood behavior, growth, and development. They are often the ones who point us in the direction of specialists when a question arises.

The Allergist

This is the MVP on our team.  A good allergist tests for allergies, writes up an anaphalaxis plan if needed, prescribes emergency medications and teaches how to use them, and educates families on how to spot allergy symptoms.  We are lucky enough to have one who recognizes and studies FPIES as well as typical food allergies.

The Nutritionist

Although we haven't used this person a lot, our pediatrician referred us because kids with limited diets are sometimes lacking in important nutrients.  Talking to the nutritionist gave me some good ideas for ingredient substitutions as well as some facts on what growing kids need.

The Pediatric Gastroenterologist

You wouldn't necessarily need to see a gastroenterologist for typical food allergies, but we found one very helpful when dealing with FPIES since it is an allergy that affects the gut.  

The Care Coordinator

I didn't realize this position existed before having kids who needed some special care.  We can take advantage of this program at our clinic as much or as little as we want.  At the very least, I get a call every six months to check in and see if I have any concerns that aren't being addressed.  But if we need help working with various specialists, writing a 504 plan for school, communicating our needs with daycare or preschool, dealing with insurance red tape, this person is ready to jump in as a resource and advocate for us.

ER Staff 

These are the people we have unfortunately needed on occasion for allergy and FPIES reactions.  Symptoms can appear suddenly and escalate to the point where we know we can't monitor or medicate on our own. We've been in good hands at our nearby children's hospital every time we've found ourselves in a scary, urgent situation.

The Teacher

This person is a superhero anyway, right?  But when she's in charge of kids with allergies, she becomes a super-superhero. Open communication and proactive solutions with our teachers are a must, especially if there will ever be food in the classrooms (and unfortunately, that's the reality of most classrooms).  

The School Nurse

The school nurse has our anaphalaxis action plan and epinephrine injectors, if one is needed.  She also makes sure everything is up to date and lets us know if our medications are about to expire. She's a key player in making a care plan for our kids, whether it's a 504, an IEP, or something less formal.  

The Babysitter

Our babysitter needs have changed quite a bit since the beginning, when our kids were babies and we were terrified to let them out of our sight.  It turns out, a good babysitter doesn't need to have special food allergy education.  The most important qualities are willingness to learn, ability to follow directions, and good communication.

The Therapist

I could shout from the mountaintops the value of therapy, for people going through chronic health issues AND their caregivers. A high level of anxiety comes with protecting kids from life-threatening allergies.  The lifestyle requirements and constant vigilance can put a lot of stress on parents. Therapists are non-judgmental listeners who are trained to help you work through whatever you are going through.  No one should feel embarrassed about talking to a therapist.  Asking for help is healthy, proactive, and makes you a stronger caregiver.

The Organized Support Group

This is a huge asset if you have one in your area.  I'm lucky to have 2-3 available that provide education, resources, events, and in-person support group meetings.  

The Online Support Community

This is a more-casual group of people that could be spread across the country, or the world.  We don't know them personally, but we can share anything with them and they know exactly what we're talking about. They cheer for our successes, grieve with our disappointments, and form a bond only people with food allergies or FPIES can understand.  

The Supportive Parent Friends

These people are the ones who are in the trenches of parenthood right along beside us.  Our kids have issues.  Their kids have other issues.  We've seen each other at our worst and cheer each other on with humor and resilience.  

The Other Sympathizers

They may not be people directly involved with our kids, or whose medical advice I'd want to hear, but they are people who care about our family.  They ask how the kids are doing.  They ask how WE are doing.  We know they are behind us.  They can't offer much more than friendship and inclusion, but sometimes that's all we need.  

There are still a lot of people who DO NOT get to be part of our Super Awesome Team.  I won't go as far as to call them villains.  They are people who just don't (or won't) get it.

The Denier

This person downplays allergies and tries to tell us it's not as bad as we think.  "A little bit won't hurt," is their mantra. This person is especially dangerous because they like to come armed with food, saying it's safe, when we really don't know where it came from or how it was prepared.  Maybe they mean well, but the truth is that they don't get the severity of the situation and need to be watched like a hawk when around our kids.

The Complainer

This is anyone who thinks the inconvenience of food allergies is ruining their life, when they don't even have them.  They believe people with food allergies shouldn't travel, shouldn't go to school, shouldn't eat at restaurants, or shouldn't be invited over for meals, because it makes other people have to go out of their way to accommodate them.  Complainers have the luxury of complaining because it hasn't happened to them, but you can bet they'd change their tune in a heartbeat if a loved one was diagnosed with food allergies.

The Know-It-All 

This person has a theory about the rise in food allergies and needs to preach it to you.  They'll say you ate the wrong thing while you were pregnant, or that you didn't expose your child to allergens early enough, or that you raised your child in a sterile environment (HA HA!), or that you have bad genes.  They don't have usable solutions, and if you don't watch out, they'll make you feel guilty for something you never had control over in the first place.

The Internet Troll

This anonymous person pops up in the comment section every time an article about food allergies comes out.  They have horrible, insensitive things to say, to try to incite anger and gain attention.  Don't try to reason with them. Don't tell them off.  Just ignore them.

It's sad that sometimes the focus is on people who are working against us, but that makes it even more important to have a great team of supporters on our side.  Sure, you could say some members of our Super Awesome Food Allergy Super Team are people just doing their jobs, but it's because they do their jobs so well that we think of them as superheroes.

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