Monday, July 8, 2013

Life-threatening peanut allergy

If I had written this post two weeks ago, I wouldn't have been able to see the screen through the tears. I was a hot mess. Use the words 'life-threatening' in front of anything describing one of my boys (you, too, Rusty) and I'm a wreck. But, some time has passed. I've met with my psychiatrist to adjust my meds. I've done some reading and understanding of the food allergy world. And I've gotten a lot of support via family, friends, friends of friends and Facebook posts. And I've done a lot of praying.

So, here I am. Writing this post.

Elias has life-threatening peanut allergies.

This sweet boy right here. Sweet, cuddly, wild child.

It boggles my brain to think that any kind of cross-contamination of anything peanut protein related and we could be in an emergency situation. Look at that face. It wrenches my heart.

But, you know. This is manageable. I needed to get my facts straight, get a grip on my emotions and pray about it. I told my mom a few days after the diagnosis that I felt strangely, suddenly, at peace about it. I was telling her as I pulled out of the driveway to go somewhere or other. And right there, over our culdesac was a giant, bright rainbow. I burst into tears. It was a sign from God that it was ok to feel at peace. It was going to be ok. (Note: I'm going through and editing before posting. And what do you know? Somewhere Over the Rainbow plays on my Spotify account. Big smile. Deep breath.)

And, later, I recalled this rainbow story to a dear friend. She told me at her church they were talking about praying for a 'shield' to be around you and your loved ones. And that she thought of us. We can be a shield for Elias, and beyond us, God will be a shield for him. It will be ok.

A few days later, a double rainbow was in our path home from the mall. Rusty pulled the car over and we showed Asher. Again, thank you God. And moments later, a text from the same friend saying 'another rainbow!'

God is good, you know. It will be ok. Elias will be ok.

And because I know it will be ok, and because we have our shields in place, I can write the story of Elias' diagnosis.

I've always suspected peanut allergies. He'd get random hives, usually while at the table and each time, Asher had eaten peanut butter. But not every time Asher had peanut butter. But we sometimes shared face cloths when cleaning up, and you know, crumbs happen. I told our pediatrician that I had my suspicions. She had me do the 'poor man's test' and put some peanut butter on his leg. She said a reaction would be a good sign of an allergy and to hold off on introducing peanut butter for a while. We did this around his first birthday and there was a little red mark, but nothing crazy. His skin is so sensitive anyway and despite others saying, "he doesn't have allergies", I wanted to continue to avoid the peanut butter.

Then, right before his fifteen month well check up, I decided to give him a peanut butter cracker. It was morning and I'd be home all day to monitor him closely. I served one cracker along with his watermelon. He stuck his finger in it, seemed annoyed that I'd put some junk on his precious Ritz and pushed it aside. He continued with his watermelon. A few minutes later, I glanced his way from the sink. He was covered in hives from his nose down. And in the crooks of his elbows. There was no mistaking these hives. This wasn't a Kira's-freaking-out-again-about-something moment. Definite reaction. I wiped him down and gave him Benadryl and he was fine within an hour. Maybe he ate a tad bit stuck to his watermelon? Maybe this was just from being on his fingers? I didn't know.

So, a few days later (great timing!) at his well check up, his doctor said, "You were right all along. There's something to be said for a mother's intuition." Validation. Thank you, for saying that. She prescribed Epipens and gave me a referral to an allergist. I immediately made the appointment for a few weeks later (as soon as we could get with the pediatric allergist) and picked up the Epipens from Rite Aid pronto. We avoided peanut butter, but pretty much continued everything as normal as usual. Eating out, exploring new foods and places. I didn't let myself read any blogs or literature that would freak me out. I was going to be cautious until the appointment.

Thank goodness for Nini while Mom was turning into a puddle of anxiety.

Early into the 15-minute test.
Then, long story short, we had the appointment with the allergist. My sister came with me, thank goodness. Those little pricks on his back were not his favorite thing. And the peanut 'wheal' appeared instantly. And it grew large, with little white hive-y looking things in it. He also tested positive for dog, pistachio and pecan allergies. They confirmed he was, in fact, allergic to these things. They offered blood testing for further information, and to test other items in the legume family that can sometimes be tied to peanut allergies. I said, yes, of course. So, Joni and I held Elias down while they drew blood from his little arm. So pitiful. Poor guy.

I felt numb. I could feel my anxiety brewing up. I didn't feel like I got a lot of information from the appointment beyond: avoid peanuts, avoid things made with peanuts, read labels, avoid all tree nuts. I didn't even get an 'action plan' or print out of his results. It was weird. Oh, and here's your Epipen prescription. (However, I chose the new Auvi-Q one that is more compact and talks you through the process. In case of emergency, I definitely need something talking me through what to do. Whoever invented those is genius. And probably a mother.)

I asked how severe the allergy to peanut was. They said, you can't really, truly tell from this test. All you can tell is that he's allergic. You get a positive or a negative. There was no way to know how he'd react when exposed or what the threshold level would be to trigger a reaction. The best thing to do is to operate as if the allergy was the most severe and adjust your life/diet accordingly. That's how to keep him safe.

Cue: further anxiety.

I called back the next week to get the blood test results. (I was a little miffed that according to the paperwork they had had the results for days and hadn't called me. Couple that with the lack of information and just overall not great feeling I had from the initial appointment, I'm not sure I want to continue with them as our allergist. So, if you have recommendations in the Raleigh area, send them my way.) Anyways, back to the results.

They were high. And the nurse used the terms: life-threatening allergy. Severe.

Oh boy.

I was told to speak with the manager whenever eating out, and to consider packing our own meals for him. I was warned that egg rolls are sealed with peanut butter, and Mexican food uses peanut paste to thicken sauces often. Peanuts are all over the place. I had to be diligent with labels. I had to throw out the plain M&M's we used for Asher for pottying because they said, "May contain peanuts."

My anxiety was through the roof at this point. I listened to her through the phone and took notes feverishly. I cried, and called Rusty and my mom and my mother-in-law and cried to them. I refused to let myself Google though. I tried to stick with 'reliable' resources and websites that came with the allergist paperwork.

I talked to our pediatrician at a sick visit the next week. She said that his blood levels weren't off the charts high, but they were high. She told me to consider an allergy armband for him when we're out playing or eating. And again, reiterated, that allergies were unpredictable. Just because he has something once without reacting doesn't mean it's safe now. Labels change as manufacturing processes change. Cross-contamination occurs. Read, ask and watch. Reactions can be of varying levels of severity. So, a bunch of unknowns. But, she was reassuring and kind, and understanding since her daughter is allergic to cashews. I felt, overall, calm after our talk.

For me, not knowing triggers my anxiety. And this diagnosis a big, 'ole dose of not knowing. What if? What if? But what if? I kept asking anyone who would listen. What about when he starts preschool? And what about when he's dating and he wants to kiss a girl who just ate peanuts at the bar? What if it's that severe that something happens and he feels uncool carrying his Epipen. Ahhhh, downward spiral, you see. Maybe God is trying to tell me to relax and let go?

I feel like a broken record. I've had to tell myself and Rusty and those who help care for Elias: The only thing that's known about food allergies is they are unpredictable. I am never going to know what's going to happen, or could happen. I don't know how he'll react. All we can do is keep our tools handy to protect him. You can eat something once and it's fine. But next time, it could be anaphylactic shock. We have to be ever-cautious, especially since he's so little and will pick up (and chew) anything and everything. As he grows, he'll learn to help manage this with us. But for now, we are his shield. Us and God.

I have this nagging worry that all of my anxiety about things that aren't really big deals (colds, coughing, rashes, fever) and freaking out a lot in general will be to Elias' detriment. I worry that people won't take me seriously and just think, "Oh Kira freaks out about everything." But this is serious. So serious. I'm trying to tone down my overall anxiety and really convey to those in our lives that this is a big deal. A really big deal. And everyone has been great. My sweet sister reads labels after I've read them, even when I don't ask her to. My mom bought soy-butter to replace Asher's jar of peanut butter at her house and has listened to me worry and cry on repeat. My mother-in-law made a big lunch the other day, checked all the labels and offered to call the deli to ask about the oil the chicken was fried in. And yes, we have to worry about these things now.

But thankfully, Elias has an army of shields around him.

And it will be ok.


Melissa said...

Kira, my eyes are full of tears as I read this. I'm so sorry that sweet Elias has to deal with this (and you too!) but just like you said -you are his shield and he is so lucky to have you. I battle anxiety over my kid's health too and one thing that always calms me is to pray "Lord, give me the knowledge, wisdom and courage to do the things within my power to keep my kids safe. And help me remember that you will take care of the rest." Best, Melissa

David Sweeney said...

Nicely written.. Elias is lucky to have you as his mom!

KB2013 said...

I have hard core nut allergies as well and yes it's hard but it's manageable! You will get into a routine and be able to protect him from peanuts that will harm him. You will get used to what he can and can't eat and you will make damn sure the waitress at a restaurant knows whether or not there are peanuts in his food! It becomes second nature with a food allergy and it's not the end of the world!

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