Hope in a life with peanut allergies

So, it has been a full week. A full week of feeding Laura peanut. What do I think? I think it is awesome! It is amazing that she is eating (albeit miniscule amounts) peanut. It is crazy that she is consuming on a regular basis, something that is so very dangerous for her. I LOVE that research is at a point that this is an option for us. I LOVE that Dr. Jones has decided to offer OIT. I LOVE that OIT is so successful. It is ok that it is a strenuous program. It is ok that it will require some sacrifices. I am just happy. Happy and relieved.

When Laura was first diagnosed, there was no hope in sight. We were told that she was severely allergic and that she would need to spend her entire life avoiding any contact with nuts. For any allergy moms out there, you know what that is like. Lets just take my kid and throw them out on the gun range. (Ok, I live in Wyoming, that is what comes to mind, haha) Now....your child can't leave. But hey, they can just duck every time a bullet flies by. OK? Having a toddler with allergies was challenging. When they are young, they just eat the food that is given them. They don't care who gives it to them or what it is. One day I was at the soccer field with my kids. I turned my head for ONE SECOND and some mom had handed Laura a peanut butter filled cracker. I caught it just in time. Laura didn't know any better, she was probably only 15 months at the time.

Around that same time period, we went to a 1A baseball game. We lived in Iowa at the time and our little town had a 1A baseball team. Going to the game was a common and fun thing to do with the kids. I had no idea about peanuts there. I admit it, I was still new to the peanut allergy life, and naïve. When we got there, I hadn't seen any peanuts and didn't even think about it. Partway through the game, I noticed a bulge in Laura's mouth. She had an ENTIRE peanut in her mouth. Talk about heart failure. Luckily, it was still in the shell and we must have caught it immediately. More Benadryl, but she was ok.

I remember her having strange random allergy symptoms fairly regularly. I had read everything I could get my hands on about food allergies. But, this was pre-Facebook. Before support groups. And before much was printed about food allergies. And most of all, before the food labeling was very good. One day Kirsti, my oldest, made a discovery I had missed. "Mom, you can't give Laura that mayonnaise! It isn't safe!" WHAT? That was the beginning of the never-ending label reading. FOR EVERYTHING. Even mayonnaise. And juice. And did you know that some green beans aren't safe? The list is never-ending. I learned that day that I had to read EVERY label. Even if it wasn't a baked good. And even if you would never in a million years suspect it could have contact with peanuts. If it wasn't straight from our garden, it could be contaminated with peanuts. Ugh. Oh, and speaking of gardening, did you know that some mulch and some potting soil contains peanuts? Yes, nuts are EVERYWHERE! But, it is ok, just avoid them. Ya, right.

Kindergarten was the hardest step for me. By the time Laura was 5, I had pretty much figured out how to be "that Mom". We pretty much knew how to keep her safe. BUT, no one else knew all those things that our family had learned. I was supposed to just take her and drop her off and trust someone else to keep her safe? ARE YOU KIDDING ME? And what will happen when other kids eat peanut butter sandwiches at lunch? Or eat peanut butter crackers at their shared table for snack? What about when it is a birthday and she is handed a cupcake? Or a doughnut? Or a friend shares that granola bar? What happens when her eyes start to swell and the teacher doesn't notice right away? (Because what kindergarten teacher doesn't have her hands full?) I felt like I was asked to put her in a classroom where there are a bunch of loaded guns. But it is ok, just ask the kids not to play with them. She will be fine. It didn't help that they really weren't any other kids in our area with severe allergies. I am certain that the school thought I was a nut case and an over-reactive parent. I know that they didn't take me seriously. Even though she was my third and I wasn't that way at all with my first two. I caught the voice changes and the eye rolls. I thought about home-schooling Laura. I thought long and hard about it. I knew it would be safer for her. BUT, I also knew Laura. I knew how much she NEEDED that socialization. She was the kind of kid that would have been happy staying home 24/7 her entire life. But she NEEDED to learn how to navigate her world. Peanuts and all. So we did it. It was hard. I actually ate lunch with her for the first 6 weeks or so. We didn't know how she would do in the cafeteria. We didn't know if she would need a separate table, or if she would have to even eat in a different room. And then to the biggie. Our school SERVED peanut butter sandwiches about 3 times a month. YEP. And I tried. But NO, the district food service WAS NOT going to change. Period. They had government subsidy money and they were going to use it. Or something like that. It was obvious that I would have no impact in that arena. So, I decided that the best way to handle this was with honey. So, every time that the school served PB&J's, I would happily pick up Laura. We would leave and have a "mother-daughter" date. Before she returned, her class would all line up and wash their hands. And I prayed.

There were many times during school that I got that gut-wrenching phone call that she was having trouble with allergies. Luckily they were all pretty benign. However, there was a silver lining. The staff began to see how bad her allergies were. The first was when her eyes were swelling shut. Her kindergarten teacher was very concerned. No, they hadn't eaten anything, no crafts that might have nuts, nothing! That night the custodian found peanut shells under the bleachers in the gym. She had been in PE in the gym when her eyes swelled. THAT got the schools attention. That day was a HUGE blessing to us. That was the day that the school began to believe. That Laura truly was that allergic. That I was NOT just overreacting.

Food is everywhere. You see, it is nearly impossible to just "avoid peanuts." Thus, when Laura was diagnosed, it was depressing. It is not as simple as just not eating peanut butter sandwiches for lunch. After Laura was diagnosed, I began studying. Studying anything and everything I could find about food allergies. About peanuts. About tree-nuts. (As she tested positive to them, too.)  When Laura was about four, I started finding some information about studies for desensitizing children with food allergies. It made total sense. I realized it had the potential for being dangerous. But, hello! Her life is inherently dangerous! Unfortunately, I was not able to ever find a study she could qualify for. She was too old, to young, we didn't live in the right place, etc. But, I kept reading. Kept studying. I KNEW that one day, we had to do this. I HAD to help Laura. I knew that. I knew that early on. I knew it was just a matter of when. I used to drive her allergists crazy. I was CONSTANTLY asking when it would be available. Would they do it? How soon? I always wanted to know. Every time I talked to them, I needed an update. I was always told, "Soon." I don't know how many times I heard, "In the next 3-5 years."

Then, I found a Facebook group. It was for parents of peanut allergic children. Started by an angel, Liseesta Mann. There were doctors DOING OIT in private practice. Are you kidding me? I spent MONTHS reading everything I could in her group. Why didn't I know this? Why hadn't I found this information anywhere else? Why had several allergists kept telling me "not yet"? Now for the big whammy. There was NO ONE doing it anywhere near us. A lot of people move for OIT. Unfortunately, it is not that simple for us. We have four kids. My husband is a chemical engineer. You can't just move where you want when you are a chemical engineer. You live where there is a job. Not the other way around. There was an allergist about 9 hours away doing it. I thought long and hard about that. How I wanted to give that gift to Laura. But, I couldn't do it if it meant that the cost was too high on the WHOLE family. So, we waited. Waited in the hopes that something would change.

Fast forward to January of 2014. It was late at night and I was on Facebook. My heart stopped. In Liseesta's group I saw something about it being done in Utah. WHAT? Needless to say, I freaked out. That night, I connected with both Liseetsa and Dr. Jones, the Dr. who had started doing OIT in Utah. That night, I did not sleep. I knew our lives had just changed. I knew Laura's life was about to change in a huge way. I still had things to work out. But it would all be minutia. I knew already. This WOULD happen. It had to.

We had hurdles to jump before we could get started. But this post is long enough without those details. It doesn't matter. The thing that matters is that WE ARE DOING OIT!!! 

It isn't easy. But I never thought it would be. It is easier than living with peanut allergies. Because now, LAURA HAS HOPE. Hope for a life that she has never had. And for that, I am grateful beyond my ability to express.