I’m probably more of a pessimist than an optimist, but I’ve always had at least a sliver of hope that Madelyn would outgrow her peanut allergy. As the years went by, and her skin prick test was unchanged, the pessimist in me reared her ugly head and tried to squash the little hope I had left. Instead of allowing that to happen, I looked toward desensitizing for her allergy. Every year I heard, “We’re so close to having a safe way to desensitize. Just a couple more years.” Lately, I hear “By college, she should be desensitized.” College??? Really??? I had my heart set on kindergarten. Then, it got pushed on to Jr high. She’ll be driving by college. Dating probably. I can’t even fathom thinking about how far away that is. It’s a far cry from “just a couple more years” away.
As each year past, I could see how much it bothered her to have this allergy. She’d cry and say how she wished she was like Asher and Dave, who don’t have allergies. She wanted to go to the ice cream shop in town and try all the different flavors. She wanted to go to a bakery and pick out a sprinkled donut. At least once a week, I heard her cries and I knew there was nothing we could do but wait. I just kept reiterating that hopefully soon she would out grow it or we can desensitize her.
Starting school was hard. She’d be disappointed when kids at school would bring contaminated treats, like cake, to school to share (even though notes were sent home at the beginning of the year so parents don’t bring in contaminated food) and she couldn’t have any. I hated that she was excluded. That year, we just brought her cookies/chocolate that she could have while the other kids had contaminated treats. The next year, teachers were making kids take their treats home unshared because of the potential risk for Madelyn. That’s a hard one. Obviously, I want Madelyn safe but 5, 6, and 7 year old don’t understand food allergies unless they have them and when parents bring in treats that are specifically on the “Do Not Bring” list, it puts Madelyn in an awkward situation. Kids can be mean. All the other child sees is that they can’t have birthday cake because of Madelyn. It’s hard not to be upset with the parent for putting Madelyn in a situation that allows other kids to be upset with her for something that’s out of her control and risks her life. I know the teachers do a great job at explaining to the kids about no one wanting a friend of theirs to be hurt, but I wonder if the times Madelyn has come home crying because someone wasn’t nice to her is in any way related to a treat that was sent back home.
Up until August 31st, Madelyn had a peanut allergy. We knew her allergy. We knew what foods/restaurants to avoid and what was safe. Things changed from time to time and we had to always keep an eye on food labels for any change in manufacturing practices. Yes, there were disappointments like not being able to eat at a bakery and most ice cream shops are out of the question. But, there were many things she could eat because the food was either not contaminated at all or it was with tree nuts, which Madelyn could have. It ended up allowing her to have so many more foods.
We tried numerous non peanut butters to no avail. She thought they tasted terrible. Nutella was a lifesaver. Most days she had a serving of it with an English muffin or with apples. We also found an brand of almonds that was not contaminated with peanuts. Basically, she’s been exposed to tree nuts on a daily basis for years.
This past July, we had an peanut check up with the allergist and her skin prick test was getting smaller (for the first time ever!). I felt a small piece of hope get bigger. Maybe she could out grow this allergy before jr high!!!! He asked us about tree nuts and I reiterated how she has them daily, for the most part. Then he told us that she has a 50% chance of developing a tree nut allergy. I was pretty surprised because in the almost 7 years that she’s gone to see allergists, this was the first time I’ve heard this statistic. I kept it on the forefront of my mind but since she’s been fine with so much exposure, I figured she’d be OK.
It was the first day of school and while she was getting ready, I noticed red marks on her face. I yelled down to Dave and asked if she had these red marks around her mouth when she woke up and Madelyn instantly announced that her face has been dry and she’s been itching it. I knew she had Nutella a few minutes before so I gave her a Zyrtec, just in case, and put lotion on her face. By the time we walked to school, she was all clear.
The more I thought about it that day, the more I suspected the Nutella. So, after school, I decided to do my own food challenge and gave her a spoonful of Nutella. Hives developed quickly and a few minutes later she said that her throat felt funny. Benedryl, Zyrtec and a phone call to the allergy nurse soon followed and we were set up for a skin prick test. I hoped we somehow contaminated the jar and not another allergy.
Here’s our results: It’s hard to tell but 7 out of 8 pricks had a hive on her lower arm greater than 5mm (positive is >/= to 5mm)
All tree nuts, except for Brazilian nuts, are positive. My sliver of hope died within minutes of starting the skin prick test. My fears confirmed. Fears of a higher risk of exposure. Fears of more tears. Fears for her social life and how I can never let her go to a friends house unless the parent knew how to use an epi pen and understood food allergies so well that he or she could protect my child. I would have to give them all of my trust. I have more fears about eating outside of the home. Even hotdog buns in our house were possibly contaminated with tree nuts! How can I trust any restaurant to have peanut/tree nut free bread when I was only able to find one brand of non-contaminated hotdog buns at the grocery store? Today, I emailed McDonald’s to make sure their cheeseburger buns are not made in the same facility as tree nuts or peanuts.
This sucks. I’m more worried now of one day having to use her epi pen. I’m terrified of one day seeing the fear in her eyes of not being able to take a breath. I’m worried that she will then see the fear in my eyes. I’m scared to let her sleep over at a family members house because I worry if they will react quickly. What if they’re not sure what to do and I don’t hear my phone ringing when they call to ask me? This is what runs through my mind. I’m scared for her.
I know I can’t put her in a bubble, but I wish I could. Instead, I have to put on a brave face and not let her see my fear. I need her to see that she can still do anything and I’ll do everything in my power to keep her safe.