U Know Peanut Test Results Are In

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.

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8 thoughts on “U Know Peanut Test Results Are In

  1. Thank you for sharing this story– my 6-year-old son has had a near-identical “peanut allergy” history since he was a year old. Confirmed by blood-testing, skin testing, one contact reaction, and one ingested reaction, my biggest concern has always been “will his allergy cause anaphylaxis?” I’m going to ask about the U Know Peanut Test at his next allergist appointment. I applaud your family– and your son especially!– for being so courageous throughout the trials of allergies. I agree, allergies are tough, tough, tough, but they shouldn’t define us. All the best!

  2. Thanks for sharing your journey … I feel the EXACT same way … just got our results and my 2 year old son tested positive for the ara 3. Do you have more info about each one of the ARA H? Thanks and best wishes to you and your family.

  3. I don’t have specific info on each one of the ARA H, but am supposed to participate in a webinar with U KNOW PEANUT sometime this summer and might learn more then. If I do, you can be sure I will pass this information along. Take care!

  4. I do have some information at my blog about component testing. The answer to your question about likelihood for anaphylaxis is still a big shoulder shrug.

    What they *think* (and this is still really new science) is that it’s the competition for bonding to little spots on the allergenic protein that cause out-of-control anaphylaxis. Each protein has several potential spots for bonding. If a child is allergic to a LOT of the spots, then the antibodies have to compete for resources in order to bind there. If they are short (as is the case if a lot of antibodies are also trying to bond to other spots), they send out a call for more raw materials. If ALL of them do this, it can create a cascade effect. (That’s a really poor rendering of the science…but best I can do to make it explainable.)

    The number of proteins a child is allergic to is only a proxy for the number of hot spots on a protein. A child could be allergic to Ara h 2 only, but have a lot of sensitization to the individual hot spots, and so have a problem. Or, he could have sensitization to several hot spots on several proteins. That’s why doctors say the more proteins involved, the worst the potential reaction.

    In our experience, though, reaction strength has been as much a factor of circumstances as allergen. How MUCH of an allergen the child eats is a bit issue. So is whether their immune system is already busy. (Hospitals see worse reactions in the spring, when pollen season has the immune system going.)

    As the science improves, the “fingerprint” may also improve. Don’t be discouraged though…there are so many trials going on right now to look for ways to tamp down the immune response. This won’t be forever!

  5. Hello,
    This is my first time posting here, but I think I have to share our story. My son was diagnosed with peanut allergy at 7 months when he ingested peanut butter at day care (that is another story) His reaction at 7 months was minor facial swelling and hives on his armpits and in his genital area. Since then he has been skin tested and blood tested with “highly allergic” results. Since his diagnosis at 7 months he has not had a reaction to peanuts – he will be 6 in January. I will add the poor kid also suffers from seasonal allergies, tree nuts(by skin test) and also has eczema. We just ordered the uKnow test and as you were I am very hopeful to hear good news, but reading your post reminds me to be prepared for all outcomes.
    Thank you!

  6. Hi my son is almost 6 years old in January and we just got a call today from our allergist about his blood test result from UknowPeanut his test result are h1 and h2 she said that my son is highly anaphylactic. I am having a very hard time right now because he goes to kindergarten school that’s not a Nut free school, they serve peanut butter and jelly almost every day at the cafeteria. He never have any contact with peanut. He was diagnosed when he was a year and a half year old. He had a bad reaction after eating at the cheese cake factory restaurant, we did not know what causes the reaction. He eat some bread, chicken and pasta. We call our pediatrician and advised us to give him Benadryl every 4 hours, make an appointment to an allergy Dr. Did any of you considered home schooling? My son loves his school and is very happy there. He would cry when he gets sick because he doesn’t want to miss going to school. Our school principal and school nurse are very helpful with my request like making sure that my son wash his hands before and after eating lunch, and to make sure he eats his lunch at a peanut free table. He never had any reaction in his school but knowing that he is highly anaphylactic, it made me very scared of leaving him there. I really don’t know what to do right now.

  7. Tess, hang in there, sweet friend! My son was diagnosed at a year old (he’s now in fourth grade) and attends public school, but one that is not peanut or nut-free. Personally, it has been a journey of endurance for both him and I, but one I would do exactly the same way even if given the opportunity to change my mind. With that said, I know of many moms who have chosen the home school route for their children who have food allergies and also say they wouldn’t do anything differently even if given the opportunity to change their minds. It’s important to have this discussion with your family and your allergist and come to an agreement that you can all live with. In the meantime, I’d like to recommend a few support resources that are wonderful: Food Allergy and Research Education (F.A.R.E.), Allergic Living Magazine (they have a web page too), Peanutallergy.com, and a book called “The Food Allergy Experience” written by Ruchi Gupta M.D., M.P.H., and be sure to surf the posts on my blog. Hugs to you and your son!

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