Wednesday, February 26, 2014
OIT and being hopeful
What do you do when you find out your child has life-threatening food allergies? When they test 'high' for the peanut protein, which is one of most dangerous food allergies? How do you manage in your heart and brain that any activity and any trace of this peanut protein could signal his body into anaphylactic shock? How do you educate everyone around you without losing your mind and alienating yourself (and your child)?
I'll tell you what you do.
You research. You find common ground with other parents. You research some more. You sign up for local support groups. You get your name on the clinical trials lists for exploratory treatment. Your heart leaps at every news story of someone dying from accidental exposure to peanut. You watch the documentary that was just released equating the rise of allergies to an epidemic. You raise money and walk in the FARE Food Walk. You think and prepare for the worst.
You ask questions. You hover over your child. You switch to parks with sand instead of mulch. (Yes, mulch can harbor peanut parts. See? The research pays off when you discover such things.) You dismiss the looks as you wipe down tables and high chairs and put down those plastic table covers. You ask for the manager. You stare at your child as they eat. Every meal.
But along the way, you learn. You learn to be cautious, perhaps overly-cautious to some, and protect your child. You learn that there amazing doctors out there making strides to helping those with food allergies. You change allergists and learn, by conversation during an hours long appointment, that OIT is an option for your child.
That sounds familiar. Yes, that research. It indicates that OIT - oral immunotherapy - is working for children with food allergies. Hold up, Mr. Allergist. This is an option for us? But we aren't even two years old here.
You run to the car and tell your husband. He thinks you've been sold on some crazy treatment that's just a gimmick for the doc to make more money. Not covered by insurance. Super expensive. That's all your husband hears. You rally the troops. You talk to the grandparents. You pray about it. You talk to other moms with kids in OIT. You drag everyone back to the allergist for a consult. Your heart leaps with each news article and research report that comes out, promising hope with this treatment.
And you decide, as my husband put it, that there are some things you just do for your kid no matter what. Who cares the cost. Who cares if the FDA isn't on board yet. Who cares if it'll be stressful and time consuming. It could free your child, and it could free your family. You make it happen.
So, this is where we're at. A month from yesterday - March 25 - we will begin OIT for Elias.
To put it simply, we will give him tiny, tiny, tiny, tiny amounts of peanut flour (for starters) daily. For two years. Gradually increasing the dose. Until his body learns to tolerate peanuts. It's just like allergy shots, same premise. We'll start out on the first day, for eight hours in the doctor's office. We'll head back for the second day. And then we'll continue at home. After each dose, a two-hour rest period. And hopefully no reactions. And every few weeks, we go back for an updose. If we're sick, we down dose - and pay careful attention for reactions during illness since his immune system will be overloaded.
And, after two years, if all goes well, this allergy will be old news. The stress, and fear and panic that I feel daily trying to protect my son will never be felt by him. He won't bear the weight that I bear right now. And that is worth everything to me. We could potentially send him to school without this cloud looming over our heads. We could go to birthday parties and family reunions without carrying our own food. We could vacation without me vacuuming the hotel room. We could eat cakes from bakeries and ice cream from ice cream shops. We wouldn't have to fear for our child's life every single minute. Hopefully.
I'm pretty terrified. I'm sure I'll be a wreck, particularly if he has a reaction. But, I tell myself that a reaction in a controlled environment - with the end goal of moving beyond this allergy - is better than an accidental exposure at any point for the rest of his life.
The only thing that scares me more than OIT is the fear of Elias living with this allergy for the rest of his life. So, we'll step up and out and into the unfamiliar. And we'll remain diligent. God will be a shield around my baby boy. I believe that. And I'm hopeful.