It’s been a long road for these two kids. They’ve both had allergy issues since day one, each one having a different journey. It’s not always easy, in fact, it’s never easy, but we manage.
From time to time, we head to the allergist for a check-up, just to discuss, re-evaluate or test for new things. Monday was one such occasion.
We hadn’t been in awhile, since the kids have been doing well, but with Lark starting school in the fall, I had to get her in so we discuss school plans, her upcoming 504 plan meeting and get her tested for some environmental items I had been questioning so we can be prepared in this new phase of her life. I also wanted Arlo tested for some environmental allergens and a couple of foods we have been concerned about.
It’s an hour plus drive to this specific doctor, but the kids napped while I drove in the rain. I had spent time in the days before and on the day, explaining to them what was going on. They’ve both been tested before, but it had been awhile, and I wanted them to be prepared. I don’t believe in shielding my children from medical procedures. I told them several times what the test was, how they’d get a few pokes and it might hurt and they’d probably be itchy. I don’t want them to grow up being afraid of doctors, like I was, for fear of what might happen while there, so I tell them when they’re getting a procedure and I don’t try to sugar coat what it will be like. And you know what, they’re both freaking rock stars. Neither one cried and Arlo even laughed because the pokes kept getting his ticklish spots. I’ve been tested previously as well and for those who haven’t been, basically what happens is they poke/scratch your skin on your back with suspected allergens and wait for a reaction. Then they measure the reaction and kind of rate it on a scale, depending on several factors. It’s never easy watching my kids go through pain, illness and medical procedures, but they’ve become a big part of our lives. It’s much easier to deal with if your kids are prepared and the fear can be managed better by educating them first and helping them along the way, rather than throwing it all at them at once and watch them be traumatized. We talk through everything, needles, medications, blood, bodily functions, pain…they deal with a lot and they just have to know.
The doctor only tested the kids for one main species of tree, grass, ragweed, a few molds, dust mites and pets. The thing with kids is that their allergies can change quite quickly, so knowing which things to test for is crucial. I know my kids have outdoor allergies, so it’s much easier for the doctor to pinpoint what needs testing if you keep a record. I also suspected cedar for Lark, based on laundry detergent and playground reactions to wood chips, so he added that to her test and we suspected corn, blueberries and grapes for Arlo, so those were added to his testing.
The results were that both kids are highly allergic to trees, grass and ragweed (just like mom). Basically we are all allergic to Michigan. They were only tested for one species, which are common in our area, but it likely means they’re allergic to many more. Both kids are also highly allergic to cats and dogs. Lark tested positive to cats and dogs at 6 months of age, negative at a year old, then positive again at age 2 and now at age 4, proving how inconsistent childhood allergies can be, which is why keeping track of actual reactions is crucial because testing is not accurate in and of itself. So now I will have to re-evaluate keeping our two cats again. In the past, several allergists have agreed that if they’re not causing immediate reactions, it is probably fine to keep them in the house while minimizing exposure (which we are not good at), but they can exacerbate reactions due to secondary inflammation. So, for instance, when Lark is always suffering with her asthma in the fall, the cats being around won’t really help her and can contribute to reactions, even if it’s not them specifically causing them. Pets are a difficult one because they seem to be different for everyone. Arlo has very minimal respiratory symptoms, but lots of runny nose, sneezing, etc, so it’s hard say exactly what causes it any given time, but it might be time to consider the cats, as sad as that will make myself and the kids. Arlo is positive for dust mites and molds, wheras Lark is negative for dust mites and minor reactions to mold, so they are different there.
They ran the initial tests and then you have to wait 20 minutes, or rather, distract two very fidgety kids who are desperate to scratch and you can’t do anything about it…for twenty…long…minutes…. Then they wipe things off and apply a topical cream to help the redness, itchiness and swelling. You can see the beginning of their test in the photo above. I wish I had taken and end photo, because they both had pretty severe reactions to a few things, but you can see a bit more in the video below as well. You’ll notice a super red patch on the bottom right of Arlo’s back, which is the “control.” In addition to allergens, they have two control tests. One is straight histamine and the other is nothing, actually, I think it might be saline, but it’s something else that contains no allergen or histamine. A blank test, if you will. They show the doctor how the body responds to both of these things to see what a positive result might look like. Your body releases histamine as an allergic response, so the histamine control shows that response as a gauge for the actual allergen tests. Both Arlo and I react heavily to histamine in general, so sometimes our tests can be hard to determine since you can’t always tell if it’s a reaction to the allergen, or just over active histamine response. I react from the scratch itself, so these tests for me are very difficult to determine in general.
I realized somewhere in the test window that they had forgotten to do the food tests for Arlo, so once that test was done, we had to do the food tests and wait AGAIN. But the kids were absolute troopers. I’m always so proud of them and just plain inspired by their strength, resiliency and positive outlook. They’ve been through so much and yet, they take it in such stride. The doctor and nurses all commented on how well they did and commended me for being so observant of their issues and staying on top of things. It helps me feel validated when things are confusing and difficult. Allergies are so unpredictable and sometimes I question my judgment or wonder if I’m imagining things when it comes to reactions, but I find that my gut and instinct are often correct. Like Lark with cedar. I had no idea, really, just a record of obscure reactions, but sure enough, to the doctor’s surprise, she is allergic to cedar. And similarly with Arlo and corn, sure enough, allergic to corn, even though I’ve had moments of doubt. I actually think he’s had the corn allergy since infancy, like the others, but didn’t pick up on it until last year (you can read the first post here) because corn is a less common allergen.
Arlo had two MAJOR wins though…he tested negative to Dairy and Soy, both of which he had been allergic to up until now. This is huge. My eyes welled up when he said it. I hope someday the same can be said for Lark. The doctor had given the go ahead last year to experiment with dairy in small amounts, and even certain items with soy. But we continued to avoid it, mostly because I was afraid and it wasn’t really necessary for him to eat those things anyway. But the tests showed he’s okay. He had such a rough start to life and it was SO hard, he was in SO much pain and now we are here. He prevailed, WE prevailed. He had some redness from milk, so I’m not going hog-wild and giving the kid pizza anytime soon, but it’s less worry and it will all improve over time. He tested negative for blueberries and a tiny bit of redness from grapes, which was deemed negative, but I suspect grapes and blueberries still bother him in other ways. I’ve googled it, because yes, I’m one of THOSE people, and there are some specific sensitivities that deal with those fruits, but I won’t go into much detail here, so we will just try to be sure he doesn’t eat too much of it. Arlo’s issues have all been digestive, and it’s not likely he will ever become anaphylactic, which is worry off our backs for him, but we still have to very careful with him since food allergies affect so many bodily functions and immune responses.
But corn…oh man, corn…he tested positive. I wondered if he would, since corn is difficult to test for, similar to gluten. But it was positive. I made a comment in the end like “oh gosh that’s minor!” with a smile, to which the doctor responded “I’m not sure I like that attitude.” But I think he misunderstood me, because it was said in comparison to what we deal with food-wise with Lark, which is 5+ food allergens that cause anaphylactic shock. So to us, yes, it’s minor…
…Until I really dove into corn allergy. There are obvious things to avoid, like corn, popcorn, corn chips, corn meal, etc, but corn is used to make so many hidden things (like vinegar, citric acid, maltodextrin, and more) that it can be very difficult to avoid. My heart sunk reading more about it, I’ve been driving myself insane reading ALL THE THINGS and I’ve ultimately come to the conclusion that with him, we have to take it one day at a time. Some people with corn allergy are affected by corn derivatives, like vinegar, but the science behind it is much more complicated. Some things are so refined that scientifically, it can’t possibly contain the allergenic properties, but then there’s people who do, in fact, react to them anyway. It’s enough to make you crazy, truly.
I love to read about food, intolerances, allergies, etc…being educated is key, but stepping away and looking at how it best fits your personal situation is necessary as well. I felt really pressured and worried when face with the never-ending list of corn products and corn-derived foods and additives. It has been overwhelming. Grains, in general, are overwhelming from a dietary stand point anyway, but I talked myself down and looked at it like I always do…how does it fit into my child’s big picture…for now, we will be avoiding obvious corn items. I try to avoid things like high fructose corn syrup as it is because it’s just not good for anyone, but things like vinegar don’t seem to affect him, so I think we will have to just evaluate additional items as we go. There are alternatives for things baking powder and corn starch, so we will make do when we need to. I have less worry with him, knowing it’s not likely to be life-threatening, but there’s a miniscule chance, so we adjust and make modifications that fit his personal set of issues. My advice to any parent dealing with allergies is to take what you read online or in allergy support groups with a grain of salt (did you know salt can contain corn too?!)…every situation is different and everyone’s plan may not fit exactly with your own. I joined a corn group, specifically, but I may leave it. It just causes unnecessary anxiety. Seek help if you must, but tailor things to your life. I met someone recently whose child has a peanut allergy, but they don’t allow it in their house whatsoever, which is common with most people, but for us, Lark and I both have peanut allergy, but my husband and stepson eat peanut butter frequently and we do keep it in the house. It’s never been an issue for us. I also had someone ask recently if we eat the kids’ allergens in front of them or around them, and the answer is yes, as long as it’s not at a point where they don’t also have something alternative to eat. We eat cheese in front of Lark, Lark eats popcorn in front of Arlo, and others…you just have to be careful with food prep, washing hands, then washing hands again, keeping your foods to yourself and be comfortable in knowing something could happen if you’re not careful. For some people, they’re not comfortable with the “what if” so they don’t even attempt it, and that’s fine too. We do what works for us. We aren’t perfect either, we screw up, the kids eat things they shouldn’t, but we have to give ourselves grace.
I am always thankful for my kids’ health otherwise. They’re both smart, strong and thriving. James and I have done our best at keeping things safe and manageable for them and we are so grateful that Arlo now has less to be concerned about going forward, and us too. Lark’s foods remain the same and I don’t really foresee a time that they won’t be an issues, but it’s all about education and awareness. Teaching them to be safe, aware of what’s around them, advocating for them and teaching them to advocate for themselves. Our journey isn’t over. It actually feels like it’s just beginning since they’re just now getting to ages where they are becoming responsible for their own eating habits.
Overall, it was a great appointment. It’s always nice to feel validated in your discoveries, and while some things regarding their health get more complicated, others get easier. Allergies are part of our lives and that’s not changing, but we will continue to do the best we can. I’m very proud of my kids. They are more amazing than they even realize. I’m glad they’ve had each other on this journey, someone to help and someone to protect, someone to share the trials with, a true partner in this life. I share it all so someday my kids can look back, and I share it all so those other people out there looking for help or information, might feel less alone. I know we’ve felt isolated at times, and it’s nice to have the reminder that someone else out there has been there too.
Until next time…