Day 1

Let’s start at the beginning – a few months ago…no, further than that. A few years ago we discovered our first daughter, Bethany, had a somewhat severe egg allergy. Many people ask how we discovered the allergy – well, the same way many people do – she ate one! She was just over a year old, and I was elated because she didn’t eat a lot of protein. She devoured that egg and quickly signed for more. The next thing I knew, she was covered in hives and crying. My husband was installing a window air conditioner unit with lots of swearing, so I was frantically trying to find some Benadryl for her. I’m a nurse, so I knew what this meant! I found some old liquid Benadryl we had given our dog, and pulled out some reference books I had to find her dosage. She started throwing up and having diarrhea as well. Then she started coughing and had a lot of congestion. Looking back, we should have called 911 and gotten her to the ER. But…she was a very regimented baby as far as naps go and she was due for a nap. My brain wasn’t working. So we gave her the Benadryl and put her down – and I frequently checked on her with a stethoscope.

We quickly learned the ins and outs of dealing with an egg allergy in a toddler, went to doctor’s appointments, learned of food labels, etc. etc. An egg allergy is actually easier to adapt to than people think – many pastas and breads are egg-free, and many recipes are adaptable with commercial egg replacer. Plus, our allergist was confident it was something she would outgrow. After the initial adjustment period, we were feeling pretty good about it all.

Flash forward to a year ago. Looking back, I realize now all of this was allergy-related, but we didn’t know it at the time. We started having a lot of behavioral issues with Bethany – from birth she had always been a happy happy happy child, rarely throwing tantrums and always super sweet. A year ago she started with the whining, the tantrums, the stomping feet, etc. Everybody – including ourselves – thought we had hit the “trying 3’s” after breezing through the terrible twos. That or she was not adjusting to her new sister, who was born a few months shy of her 3^rd birthday. We also started having issues with constipation and screaming at night from stomach aches, but we attributed that to the adjustment to potty training. She would have whining and crying spells where she just couldn’t stop crying. She even would tell me, “I need something to help me stop crying!” We tried everything from coddling her to disciplining her and everything in between, but the behavior continued.

Last fall, she broke out in hives a couple of times. Her behavior was at her all-time worst. She had toast when she broke out in hives so we were thinking it was something with the bread and her egg allergy. One day she did have an exposure to eggs, and when she got Benadryl, her behavior was greatly improved – that’s when the light bulb went off in my head that she was reacting to something else (duh, took me long enough!). The second time she broke into hives, my husband said, “Oh, it’s the honey on her toast.” MAJOR lightbulb! Everything she loved had honey in it – cereal, breakfast bars, toast with honey, graham crackers, etc. She ate these regularly. The other thing that made her break out into hives was Utz’s pub mix – lo and behold it had honey in it!

We made an appointment with the allergist’s nurse practitioner and told her our suspicions. To which she replied, “Well, I doubt it. People usually aren’t allergic to honey.” But they scratch tested her with it and she reacted strongly to two different types of honey. It’s one of those mixed feelings – happy that you figured it out but sad that another allergy manifested. And then when we took honey out of her diet – she was a different child! We were literally having screaming tantrums with slamming doors and her screaming, “I don’t LIKE you!!” – which may be the norm in some kiddos but not Bethany. This all went away when we got rid of honey. We still had a lot of whining but who doesn’t at this age?

Then at a birthday party she broke out in hives and complained of her mouth hurting after eating a cracker. It had no eggs, no honey, and was not produced in a facility that manufactures products with eggs. We were stumped, but life was busy and I didn’t know what to do about it. I also noticed at this time her nose was constantly dripping. Spring allergies, perhaps? Then when both girls got a virus that developed into croup, they both were put on steroids. I saw my little girl that I hadn’t seen in over a year! Another light bulb – steroids decrease inflammation and decrease your body’s reaction to allergens! I started reading stuff on the internet, digging around. One theory for allergic people is they actually crave the foods they are allergic to. So I started thinking, what does she crave? Oatmeal, Cheerios, granola bars (we found one brand without honey), toast…oats, maybe? So on a whim, we cut out oats. Her behavior changes were amazing!

Two weeks ago I called the allergist – we were due for her annual checkup, and her annual blood draw to check her egg allergy levels. I asked if we could do the full food panel again, which they said yes to. She then had her pediatrician’s appointment – and her weight was in the 15^th percentile – the highest yet! I was shocked because she is rail-thin (she IS the world’s pickiest eater, after all!) – her waist fits 18 month clothes but she is a 3T in length. The pediatrician checked but the results weren’t in. We discussed allergies but he seemed to think it was just her being a moody kid and a picky eater.

Then, THE DAY hit. I called to see if the results were in. The nurse read off the list of what tested positive: wheat, oats, rye, barley, peanuts, soy, peas, & tomatoes. What?? Really?? I was in shock. She said some things about how the doctor saw the results and wanted to make sure we had an appointment – which we did – and then said to avoid those foods until then. That was it.

I was reeling. Everything that we could manage to get in her had these things in it. And peanuts? That’s a scary one. Soy? That’s in everything these days! Wheat? What? Everything she eats has these things in it!

It was one of those pivotal moments in my life – you hear people talk about those moments but you don’t understand what they mean until you go through it yourself. I was devastated. I didn’t know if I should scream or cry or pull out my hair or what.

So, I did what most people do when they are stressed…I called my Mom. :-) We commiserated over the news. I tried calling my husband, but he was unreachable at work.

The rest of the day was a blur of emotions and stress. I tried to talk to Bethany about it, but most of what she got out of the conversation was she wouldn’t eat her friend’s foods, and that was ok. I talked to my husband, he was shocked into silence, then, “What is she going to eat?” We have been stressed for years over her poor eating.

I was grateful to have had a “God moment” the weekend before. Since I had decided to cut out oats, I was browsing the organic area in our local Fred Meyer. I just happened to be in the same aisle at the same time as one of my friends from church who has a son with multiple allergies. She started pulling products off the shelf and telling me which ones taste good and which ones her kids liked. If I hadn’t just happened to run into her, we would have had nothing to feed Bethany for dinner that night! We happened to have rice noodles that she was able to eat & enjoy. I called my friend later and she was SO great to talk to and commiserate with. She started giving me lots of resources, and throwing out words like quinoa and teff and all sorts of things I had never heard of. I was too overwhelmed to absorb any of it, but I was so happy to know somebody who had “Been there, done that.”

I was thinking of all the paths in my life that led up to that moment. Is this why I became a nurse? Is this why I am friends with another mom who’s kid has allergies? Is this why I’m a stay-at-home mom? Did all the choices in my life lead up to point of taking care of this child, that God led me this way so I raise a child with special dietary needs?

And then there is a grieving process. Your child is not normal. Food is entirely social, especially for kids. She had a birthday party in 2 days, what was I going to do? And seriously – she is the worst eater out of all the kids I have ever met. What was she going to eat? What does this mean for the rest of her life? What does this mean for our family?

I posted on Facebook – I truly have the best friends. I got an outpouring of support. I got the most responses on my status than ever before! But there was still this feeling of being all alone in this. I am her Mom--the problem of feeding her falls solely on my shoulders. While I have great support from friends and family, the actual process of grocery shopping & cooking falls on me. I feel overwhelmed, and stressed, and I have a million questions. My allergist’s appointment isn’t for 3 weeks. What do I do?

I can’t sleep, I’m up at all odd hours of the night researching online. I find great websites, and I start to worry about celiac disease. I find recipes, and I feel like I have done all that I can on the first day. I fall asleep after midnight after searching all sorts of sites that get me stressed and relieved and full of even more questions than I thought possible.

One day at a time. I can do this.