Thursday, February 27, 2014

You'll Be Okay - My song for Elias



As we venture into the world of oral immunotherapy for Elias, I stumbled upon this song.

And it spoke straight to my heart.

I hope he trusts what we're doing for him and with him. I hope he grows up and reads this and thinks, "My parents flipping rock."

I pray if we have a reaction during treatment or an accidental exposure in the years ahead that we have the strength to be strong and that he marches through it with the same zest and vivacity that he portrays every day, in all that he does.

I pray when it seems overwhelming to us as parents, and scary, that we can look at each other and say it'll be ok. Elias will be ok. And know that without a doubt.

So, my sweet boy. My brave, brave boy that doesn't even know how brave he's about to be. You are amazing and we're going to get through this together. Just as we've gotten through every day since we discovered that we needed to protect you from your allergens.

And, you'll be ok, E. You got that? We'll all be ok.

You'll be okay 
You'll be okay 
The sun will rise 
To better days 
And change will come 
It's on it's way 
Just close your eyes 
And let it rain 
'Cause you're never alone 
I will always be there 
You just carry on 
You will understand 
You'll be okay 

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.

OIT?

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.

Yes.

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.


Wednesday, February 5, 2014

Life, lately. On allergies. On anxiety. Inside the brain of this food allergy mom.

There are some things you don't know until you have to know them.

Like, a fever of 104 degrees in your child doesn't necessarily mean you have to rush to the ER in the middle of the night. And sign-ups for preschool that starts in August actually take place in February. And you can function for an entire day, quite well, on only a few hours of real sleep. And bird seed and yard mulch and duraflame log starters include peanuts or peanut shells.

Yep. These are the things I know now. And know so well that my head wants to explode. Specifically, regarding the latter set of things.

My baby boy was diagnosed with a life-threatening peanut allergy and in many ways, all that crippling worry I felt while struggling with post-partum anxiety came rushing back. All of a sudden, worrying about germs seemed so trivial. The flu? We'll manage and I'll worry through it. Just please Lord, protect my child from peanut proteins.

And that's just it y'all. The things I didn't know, I now know. And need to know. And they are with me every minute and every hour of every day. Tiny little minuscule, invisible pieces of peanut protein can harm my child. There are stories that I read on the support groups of something you can't see or even identify that are sending children like mine into anaphylactic shock. Trying to understand and appreciate this fact -- while making safe changes to our family's way of living -- without totally turning into a crazy person is really hard. Especially for me.

I have been pretty silent on this blog since the diagnosis. I've had a thousand conversations in my head that I've wanted to share. But it's upsetting to type them. I remind myself that we thankfully are not dealing with an ongoing serious illness, or struggling to put food on the table. In the grand scheme of things, having a food allergy is manageable, and preferred, even, to something just awful like cancer or a debilitating accident. Right? And, when I think about how hard this feels, I think about parents who struggle with more food allergies to things like milk, soy and eggs.

I am just having a hard time, if I'm honest. A really hard time. Rusty told me the other day, "I don't think an hour goes by in your day that you don't think about peanut allergies." And he's probably right.

We struggled through Halloween. We trick or treated with Elias in the wagon and Asher actually going door to door. We left the candy in the garage, swapped it out and washed our hands. And I kept vigil on Elias all night.

Then came Thanksgiving. We asked our family to please not eat any nut items at the table with Elias (he's also allergic to pecans and pistachios that we know of) or bring the popular pecan pie to the pot luck gathering. It reality, pecan pie was probably consumed at the cafeteria table before we got there and could be on the surfaces. And, now that I'm thinking about it, it could quite possibly be on the doorknob to the bathroom. And we all know a not-quite-two-year-old is going to gnaw his fingers constantly. So, while we were able to provide some cushion in our requests, there was still 'that chance' in a cafeteria or large family gathering environment. How to cope with that? My heart beats fast just typing it.

Christmas went smoothly. I managed without medication (yes, I medicate to get through tough times without shame). We hosted a big family dinner here at our house and everyone was so kind and gracious to check labels for me. I felt we were safe under our own roof, but I still watched him closely.

Here we are in a new year. I'm working with my doctor to try to get a grip on my anxiety. I need to feel joy more. I'm trying to rely on prayer and the trust that God is a shield around my Elias. And we are following very closely the findings coming out about the ability to desensitize peanut allergic children. There is some real progress there from amazing doctors who see that this is an epidemic and care enough to find a cure, not just arm us with EpiPens. (Much more on this later.)

I'm hopeful.

Meanwhile, I'm trying to balance my worry with reality. I'm trying to not fault my husband for rolling his eyes every time I tell him about other kids who had reactions. Like the kid who had a serious reaction when they were playing with bird seed in the sensory table at preschool. Or the families that had to ask their neighbors to not feed birds or squirrels the bird seed with peanuts in it because it was found in their yard by their allergic child. But these things happen, and are happening. And we need to know where dangers are.

I'm trying to educate those around me. And be appreciative when they listen and help. I try not to obsess about what we'll do when it's time for Elias to go to preschool or kindergarten. I try to not cry when I think about him having to deal with this allergy for the rest of his life. I try to not let the Snickers bar wrapper on the playground ruin our time together playing. But, it's hard.

I read labels like a fanatic. The FDA doesn't require companies to put 'may contain' or 'trace' warnings on labels. But many do. I try to stick to those brands when I can, knowing that if there was a possibility of a trace of cross contamination it'd be written there. I ask Joni to please check labels behind me when feeding the kids. And she'll call me in if something like a hive pops up on Elias so we can both examine the situation.

See? It's constant the things to think about. My anxiety is greater in unknown situations. And dealing with a food allergy is a big unknown. You don't know how or when a reaction will occur. And, it's hard to turn my brain off.

I want to turn this anxiety energy into positive energy. I want to advocate for my child. I want to hug my husband and kids extra, extra more. I want to thank our families over and over for their support. I want to push for better legislation for restaurants and labeling.

This crippling cloud of nut allergies that's hanging over me - it's over me for now. One day it won't rest on just us as his parents and caregivers. It'll be over him, too. And that just breaks my heart. I don't want him to feel what I'm feeling. And we vow to do whatever we can to help him and protect him, and hopefully eventually desensitize him.

I'm hopeful.

For now, though. I felt it heavy on my heart to share my personal story with where I'm at with all this. And now that I've 'broken the ice', so to speak, I hope that getting back to writing and sharing will help bring a little bit of healing. For my brain and my heart, and as a result, some healing for my family.
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