Many of you have read and followed up with me to ask about my previous post on the U Know Peanut test my son did a few weeks ago. First, thank you so much for your kindness and concern. It is just another reminder of how privileged I am to be a part of the amazing parent network in the food allergy community!
My eight-year-old son has tested positive for peanut allergies since he was a year old (as well as a few others). Unfortunately, I have seen him have a physical reaction to peanut exposure twice…once before he was diagnosed and again years later.
The first incidence happened before he was ever diagnosed and he was at day care and we think he touched a neighbor’s peanut butter snack and then touched his eye because his eye swelled out to the size of a lemon and then swelled completely shut. The only other incidence happened about two years ago when he mistakenly ingested part of a peanut-based chocolate bar (that looked similar to a safe candy bar he is allowed to eat). He vomited twice in the span of six hours with no other symptoms.
Although his the skin and blood tests continued to show his peanut allergy as extremely high, there was a small part of me that wondered (maybe hoped) if the effects of peanut consumption for my son would be only minimal. It’s important to note here that although I wondered, I never ever considered testing that theory. I am a FIRM believer in my son’s allergist and would never do anything without his go-ahead.
About a year ago, I shared my thoughts and concerns with my son’s allergist and he told me about a new blood test on the horizon by U Know Peanut that tested an individual’s blood sample against the peanut molecular components associated with severe allergic reaction. At the time the test was widely unavailable and only offered at an exorbitant cost. It wasn’t an option for us.
A few weeks ago, our allergist contacted us to let us know the test had come down in price over the past year and was being offered at a special discounted price for a limited time only. I was thrilled to have the opportunity and jumped at the chance to have a little peace of mind.
A licensed phlebotomist came to our house by appointment. She took a sample of my son’s blood into a test tube and overnighted the kit off to the testing center. She said we would know something within a week’s time.
I was terribly excited about finally getting some definitive answers and caught myself thinking about the results more each day. As it so happened, the following week we got a call that the results were in and made an appointment with our allergist to hear them.
This was over a week ago. It’s taken me this long to collect my thoughts, rationalize them, and put them into cyberspace because the results were not good…not at all what I’d hoped for.
My son tested positive for three out of the four markers for a “severe allergic reaction” to peanuts and those three markers were considerably elevated. Anaphylaxis is definitely a possibility for my sweet boy. *Sink* That’s the exact sound my heart made as it sunk down into the depths of my toes. In an instant, my visions of a more relaxed carefree boy (and his mom) were completely wiped away and replaced with the terror I remember the day we got his initial peanut allergy diagnosis.
You know the feeling, the one where your mouth goes dry, your eyes blur, your world feels like it’s been turned upside down AND it’s spinning. And, oh yeah, the floor drops out from beneath you too. That’s exactly how I felt as I looked at the allergist with tears brimming and then spilling down my cheeks. Dang it!
I won’t lie to you. That day was terrible and I went through most of it in a fog feeling as though life had dealt me such an ugly and unfair card that I just couldn’t cope.
Now fast forward to today. I’ll be honest, it still stinks…stinks hard. But…I am responsible for my sweet boy’s precious life and to make sure it’s filled with smiles, happiness, and joy and I don’t take that responsibility lightly.
We have a saying at the preschool I work at, “You get what you get and you don’t throw a fit.” And I think that is rather appropriate for this situation.
Is it unfair that he has peanut allergies? Yes. Is it unfair that they are so high that anaphylaxis is a possibility? You bet. Does it make my heart heavy? Undoubtedly.
Am I blessed to know ahead of time what the risks are? So blessed! Did we get a gentle reminder of how important it is to read every label and not get too comfortable? Definitely. Are we okay? We will be.
Food allergies can only define you if you let them. My family chooses not to let them define us.
So, you ask, “If you had it to do over, would you do the test again?” Absolutely! I have peace of mind…not exactly the kind I was looking for but I know. I know the score and I know the risks and now we take it a day at a time.
For what it’s worth…my son took the news like a total trooper. Sure he was disappointed, but who do you think taught me these little gems of knowledge I’ve been spouting? Words just can’t express how proud and impressed I am by my little guy. We can learn so much from our kids if we are willing to be taught!
As for those of you considering doing the test, I say go for it! Prepare yourself for the possible outcomes, but give yourself the gift of knowing. I would highly recommend the process.
Speaking from a parent’s perspective, If U Know Peanut is out there and listening, there is one thing I would suggest for the future. In your test result handout for the physician and patient, please clearly define “severe allergic reaction.” Does it mean at risk only? Does it mean anaphylaxis is eminent? Does it mean vomiting and swelling? Define exactly what it DOES mean.