Roman was my first baby. When he was six months old, I let him lick a No-Bake cookie. Immediately, he broke out in a rash around his mouth. That was my first sign there was a problem. I chose to avoid peanuts for the time, until he could be tested with an allergist. Months later, he was skin tested which resulted in a very large skin reaction that left us for sure he was allergic to peanuts.
When he was two, he had an unknown reaction while traveling on a bus with a ton of teenagers in the middle of no-where Georgia. We were youth pastors on the way home from youth camp. It started with body hives and lead to profuse swelling. The skin over his joints was literally overlapping at the creases. We called 911 from the bus, they met us on the side of the interstate and Roman took his first ambulance trip to the nearest hospital where we stayed for several hours.
From very early on in his life, fear and anxiety had a chance to take root in him.
Several more times, Roman had unexplained reactions. Once, Roman was in classroom with someone eating a pb & j sandwich. Even though my son was instructed to sit at a different table, later in the day he had a reaction where his eyes swelled shut and he had difficultly breathing.
These instances always lead to antihistamines, steroids and breathing treatments. Our epinephrin pens are never far from us. Its our greatest fear that we will have to use it. The actual use of it isn’t what is scary. It is the idea that if we use it, he is having an anaphylactic reaction. Anaphylactic reactions can lead to death.
What is your greatest fear? Many of us would say suffocation. Imagine the fear of suffocation from an anaphylactic reaction. Imagine that fear in the mind of child.
When he was six I finally decided to have blood work drawn on him that tested further for the allergy. His results came back at the highest possible level. We were heartbroken. We had hoped he was one of the few that outgrow this allergy but he was not. It was here to stay. Not only was it here to stay, it was bad. The doctor made sure that we understood. If he were to have peanut, he would not get a rash, he would, more than likely, have an anaphylactic reaction.
The problem with peanut allergy, like many other food allergies, is that it is never completely avoidable. It can be hiding anywhere at any time. Foods can easily be “cross-contaminated” in a factory when several different items are made on the same equipment. Workers can cross-contaminate in a restaurant. If a worker touches something with peanut in it, then touches your food, you can be exposed. The tiniest amount of exposure can bring about a reaction. Imagine a kid in the movie theatre eating a Reese Cup and wiping his hand across the fabric seat. Then, my son comes along and touches the seat, while he eats his popcorn. It can be fatal. Imagine that you just ate peanuts and then kissed my son on the cheek or touched his face.
As a mother, it is on my mind at all times. Every food label in my home has been mulled over so he is safe here. But, when we are anywhere else, safety is never felt. He is now eight years old and is crushed by the weight of fear. We have seen him have full-on panic attacks in restaurants when he got a little choked, thinking he couldn’t breath because he was exposed to a peanut. Everywhere he goes, its on his mind too.
If he is having problems with environmental allergies, it often get confused with a possible peanut exposure.
He played basketball this season. I could tell on the court that he was “in his head.” Sometimes, he withdraws and is quiet which is definitely not his normal personality. He later told me he worries about things like whether or not someone ate peanut butter then touched the ball. He concentrates on not touching his face which consumes his thoughts.
This is the most heartbreaking part of it all. It is the anxiety and fear my son feels. We don’t care that we can’t have peanuts. These years are so vital in his development. His personality has literally been shaped by this allergy. In 6-8 years, he will no longer be at my side 24 hours a day. I won’t be able to monitor every bite that goes into his mouth. I wont be able to wipe down tables and scan the room for possible culprits. What if he kisses a girl or eats the wrong brownie at a friends house?
So, here we are. Life has brought us to this crossroad. My eight year old has a severe peanut allergy and now there is possibly a treatment when there had not been one before. For years, the only treatment has been avoidance. But, now, there is something new, a possibility. Oral Immunotherapy. The treatment isn’t without risk though. It involves actually feeding your child the food they are allergic too! Can we do this? Can we handle this pressure?
More to come on our steps towards Oral Immunotherapy, aka OIT.