These last few weeks have been particularly draining. I thought we were “out of the club” so to speak. Since my daughter’s official diagnosis with the peanut allergy at 22 months, we have been following up annually with blood work to review her status. Last year her labs were excellent… in fact, her levels were non-detectable for peanut, however she was too young to try a food challenge in the office. The doctor said her level was not necessarily “0” as the lab range would not show that level, however if she continued to have these results, we would be able to hopefully “test out” at next year’s appointment. The allergist said not to change anything and stay with the same routine.
For the last year we’ve been incredibly hopeful. And honestly in my mind, I was telling myself that not much longer and we would have the normalcy that non-food allergy families have and don’t appreciate. I’ve made lots of deals with God in the last year on this. At least it was a deal on my end. That I would take her allergy being gone over millions of dollars should I be destined to fortune. That I would continue to advocate for all the children, individuals and families afflicted by this horrible disease. That I would try to listen better to his calling and be a better person. None of this, however, was obviously a done deal.
We did the blood work between Christmas and New Year’s. My husband had to bear hold her at the lab. I had to give stink eye to the registration clerk after requesting their most experienced pediatric phlebotomist. Then we went to Target afterward for what we coined the “blood toys.” I was so confident we would have good results because I have been really careful as to what she was fed this year despite our food label vigilance, which makes this very challenging.
Don’t Just Read, Ask Questions
It seems simple. Just look to see if peanuts are in the ingredient list or if there is a cross contamination statement (“may contain…”). Food labeling laws did make big improvements in 2006 requiring the eight major allergens to be clearly stated on the package either in the ingredients section or with a “contains” statement on the label. Yet, there is this major loophole in our labeling law that does not require labeling for potential cross contamination. It only has to be stated as an ingredient if it is a planned ingredient in the food product, yet there could be trace amounts not listed on the label that could be enough to cause a deadly reaction in some individuals. Many manufacturers use peanuts in some of their products, therefore they are present in the processing plant. If there are not sufficient cleaning and testing processes in place, trace amounts of peanuts from shared facilities or shared lines could be introduced into other foods. I use peanuts in this example, but the other allergens share this same issue of lack of requirement to label for possible cross contamination.
So how do you truly know if a food is safe? You have to call the companies and learn their policies, which they could change at any time without alerting the public. Often it is wise to stick with the big brands because they tend to be more consistent in their labeling and take allergies seriously. But it takes hours and hours to call the manufacturers to request this information. Then you have to keep detailed notes on when you called and the information provided because eventually you will need to recheck with them to ensure no changes occurred to their polices and practices. You have to check all ingredients/products right down to the sprinkles and spices. Every time you purchase a product you have to review the label in case it has changed from the last time. Then you have to trust that food workers are following policy and doing what they are supposed to be for safety. It’s hard to have that trust when you subscribe to the FDA’s list of food recalls and see how many manufacturers are recalling food already sold to the public due to a lack of allergen labeling.
There is a terrific website I found called www.snacksafely.com. This website was founded by a food allergy mom looking to keep an updated list of foods safe for peanut, tree nut and egg allergies. They routinely recheck with food manufacturers to ensure processes have stayed consistent and publish a safe list that many schools are utilizing nationwide. This list helps tremendously, but there are still plenty of food labels to check.
The Long Haul
Back to our results: When the doctor came in, I was ready for the good news. I knew the food challenge would require me to have an anxiety attack but I was going to have to cope. “The results are confusing…” he said. Her levels were up and while they were low, they were detectable again. Allergists don’t like it when levels spike back up. What they like to see is a consistent decline. We could still try a food challenge but there would be more risk. I’m not much of a risk taker with my daughter’s life, so that was off the proverbial table.
Then he added another concern.
Her blood levels for two tree nuts (cashews and pistachios) showed a reaction when she never reacted to tree nuts in the past. I asked if she was now allergic to those also. We have a very kind and intelligent allergist who could tell I was on the edge, so he responded “I wouldn’t rule it out.” Next he said to avoid tree nuts also and to come back in a year to see what next year’s values brought. “Wait, wait… we were done with this allergy… I want us out of this club…” I said. He responded that everyone does, and then realizing I was on the verge of hysteria, he settled in to talk awhile. We decided on retesting her in 6 months. I thought this would be our last blood draw. Looks like there will be more blood toys in 6 months.
Luckily the sun was setting and my daughter was distracted by watching our Kindle so she didn’t hear me crying most of the way home on our 50 minute drive. I cried 99% for her. But that 1% was all for me. It’s hard enough being a mom. Working and worrying about her all day. Running around exhausted and just waking up and doing it again the next day. I decided we are going to Disney World this year. They cater to food allergies there and we all need a break. We deserve to go somewhere magical.
In the next few days after the news, as I attempted to tighten down my pact with God, my good friend who had many health issues the past few years reminded me that it doesn’t work that way with God. I may have rolled my eyes at her. She did note that this may not be a coincidence that I am a dietitian and my daughter has a food allergy. She thinks I may be able to help many others on our own journey.
I hope this monthly article proves to be helpful to others. To lend support to those who feel isolated and to create awareness to those who are not afflicted by food allergies, yet are compassionate to take the time to read. Please stay tuned and share your thoughts and feelings as we head down this road we wish was less traveled.
Katie VanBuren is a clinical dietitian with ProMedica Bixby and Herrick Hospitals. She has 19 years of experience, with 17 of those being with ProMedica.