You know those days where you go through so much that your nerves feel fried and you just need a heavy blanket, a warm beverage, and some comfort food? That’s the day I’m having.
I’ve been up since 3AM and my husband woke up shortly after; both of us were anxious we’d miss our alarm and our minds were racing about what to expect from the next several hours. We knew we had to leave the house at 6:45 to make our 8:30AM appointment with our pediatric allergist at Dartmouth Hitchcock Medical Center.
I simultaneously dread and look forward to these appointments. This would be the third skin test for our daughter. They’re painful, then they itch for 15 minutes, then we get news that will help us better support our daughter and perhaps change the way we eat, the products we use, or the activities we participate in.
On the drive I tell my husband how anxious I am. He is such a rock when I’m anxious, always pragmatic and totally logical.
“Krista, if we confirm an allergy today, or several, she’s already allergic. We already avoid the things we’re testing for. At the end of this appointment we’ll have more information to support her and keep her safe.”
He’s totally right. And, maybe, I think, we get some negatives and can add some fun things to her diet. I started to fantasize about coconut milk, baking with coconut flour, coconut oil and yogurt and ice creams, and that vegan coconut tapioca pudding recipe my friend told me about months ago.
We’ve been avoiding coconut because we were avoiding all tree nuts after a positive test for almonds (even though coconut isn’t a tree nut many allergists and the FDA treat it as one – why is the food allergy world so complicated?!) .
Our plan was to test eight different foods: sunflower, coconut, sesame, kiwi, blueberry, raspberry, pea, and corn. Each one of these foods are suspected allergies because of the presence of hives, a skin rash, digestive issues, or anaphylaxis during or immediately after eating them. A skin rash alone isn’t enough to diagnose an allergy. Many children experience a mild irritation after eating acidic foods. Cece always has a small rash after eating citrus fruits and tomatoes, both of which she loves and is not allergic to.
We had been cautiously avoiding corn, peas, and blueberries for this reason, but since her last anaphylactic reaction requires the skin testing, we decided to put them on the list of foods to test.
Cece was a total mess when we got into our exam room. She is so fearful of medical professionals now. It’s normal for her age and she’s had a lot of traumatic medical interactions. The nurse pulled out all of her tricks, basically performing every task on Mama before turning to Cece. She even drew a big smiley face on my arm in marker before labeling Cece’s back for the 10 pricks she would receive (the 8 foods, plus positive and negative control pricks.)
I struggled to hold back my tears while Cece suffered through the test in my arms. The only thing worse than seeing your child in pain is seeing her afraid. The pain is fleeting but I’m not sure that the effects of this kind of fear are.
Ugh, this has been a really difficult day.
Cece tested positive to sesame and coconut, and nothing else. After processing the news, it’s comforting to know that we didn’t have as many positive results as her two previous skin tests. We can cautiously reintroduce blueberries, raspberries, peas, and corn.
The doctor advises that we do individual supervised food challenges – like the almond test we have scheduled – for both kiwi and sunflower since we were sure she had hives the last time she ate kiwi and the doctor really expected a positive result for sunflower after her last anaphylactic reaction. It’s possible to have both false-positives and false-negatives with skin prick tests, though they are really helpful in confirming an allergy after a suspected reaction.
Basically, if you’ve seen the signs of an allergic reaction after ingesting a food and then you have a positive skin test, you can be certain of the existence of an allergy.
The doctor also said we could do a food challenge for coconut, since we only avoided it because of the suspected treenut allergy and we’ve never actually fed it to her before. Today we did the test hoping that it would tell us that it would be safe for her to try.
Each food challenge must be done separately and they take four hours from start to finish. Total driving time to and from the hospital is 2 1/2 hours, and I’m due to have our second baby in about four months. Our almond challenge isn’t scheduled until late October, so these food challenges won’t be completed anytime soon.
Holy macaroni, talk about overwhelming. Andrew says “It’s not a race, we already know how to avoid these foods, so we’ll just take it step by step.”
Ah, deep breath.
After each food challenge, we’ll reevaluate the plan and go with the doctor’s advice. I asked the doctor if a successful food challenge for almonds safely opens up the whole world of tree nuts to us. No, it doesn’t. We’d have to do another skin test, one for each type of tree nut. Ugh. It’s not what I wanted to hear, but so many of the vegan recipes we want to try utilize cashews and other nut products. Vegan recipes are an easier way for us to find dairy-free and egg-free alternatives to common foods. Not to mention, so many processed foods have hidden garlic (and now sesame) so we gravitate towards vegan, whole foods, or food from trusted allergen-free facilities when we’re looking for food or recipe options as a way of avoiding some allergens right off the bat (ie. store-bought broths, sauces, spice mixes are likely to be unsafe.)
Then came the information that sent all of my mental and emotional processing into a tail-spin. That cough that Cece has periodically had for months? Her doctor wants to treat it with asthma medication. On top of prescribing a rescue inhaler, “because you never want to be without it when you need it,” he also wants to treat her with a daily, chewable, asthma medication for a few weeks to see if it clears up.
We weren’t even remotely prepared for this. I hadn’t done any asthma research so I couldn’t even begin to fathom the questions I would have. I hadn’t researched medications or medication alternatives. And, now, the doctor is describing the medication’s possible side-effects that are experienced in “older children”: behavioral problems, anxiety, depression, etc. I couldn’t process all of the allergy related information we’d just received, let alone this new, unexpected curveball. The doctor quickly went over how to use the rescue inhaler, and we were on our way.
Bathroom break. Cece was terrified of the changing table, the bathroom stall, and the paper towel dispenser and I had to hold back my tears in the restroom. She had just been through so much and it was barely 10am.
We climbed into the car in the parking garage, and water works. Mama lost it.
The food challenges. The new baby. Our far-away family. The new allergy research I have to do. The asthma possibility. The medication that may be unnecessary or premature. Oh, and then there is Cece’s new full body rash from that hypoallergenic bubble bath I surprised her with.
I just can’t. I need time to process. Thankfully, we have an exhausted baby and a long drive home ahead of us…
Ok, so there isn’t really anything new about our situation. It’s just that we know more now. Knowledge is power, right?
My neurotic self would have been researching anyway, and now I can direct my research towards avoiding sesame. I’ve already found out that it’s one of the most common allergies in the US, it’s labeled in other countries, and there are petitions to have it added to the top allergens (and therefore labeled better) in this country. I’ve also found that it can be hidden on a label, so it just has to go on our list of things to check when we call manufacturers. Coconut is easier and I’ve already done a lot of research on that topic. How I wish avoiding allergens was as simple as reading labels.
I made an appointment with our pediatrician to discuss asthma and the medications. Up until this point, I’ve totally trusted our allergist and haven’t been incredibly trusting of the allergy-related information we’ve received from our pediatrician. This appointment will provide a second opinion and we can run all of the information we’ve received from our doctors against any research that we do and make a more informed decision before we choose whether or not to give her a pill. This isn’t an emergency, just a potential tool to keep in our bag in case we see the need. This is all about supporting our daughter and keeping her as healthy as possible.
Since Cece woke up from her nap she’s been her happy and energetic self. She’s been giggling – even more than usual – with Dada and she and I spent a lot of time coloring together. As I’ve said before, she’s resilient like all kids, and this stuff is probably harder on us than on her. Andrew and I are continually processing new information and situations, as all parents do. We may not ever be done with doctors appointments, but at some point we should at least become experts at adapting to new or evolved challenges in the realm of food allergies, parenting, and beyond.
Shock, grief, fear, anger, guilt, and acceptance (not necessarily in that order) all seem to be part of every food allergy parent’s journey. Some days we experience all of it, but our girl doesn’t know the first thing about it.
New list of food allergies: Milk, Egg, Garlic, Peanut, Treenut, Shellfish, Coconut, and Sesame (Still unknown: Kiwi and Sunflower)