Money Can’t Buy Safety

To be a parent of a child with food allergies is to do the absolute best you can all the time to ensure your child’s safety.  Period.

To say, “do the best you can” is such an oversimplified statement of the dedication these parents (myself included) give to their families every day.  Their work is endless…finding safe foods, trying new recipes, keeping up with industry news, learning about new allergy tests and research studies.  The list goes on…and you see my point.

So, I get my feathers ruffled when a company or leader within the food allergy community implies or sometimes right- out verbalizes that I could be a better parent and do more to ensure the safety of my child if I would only (fill-in-the blank here) by using a product or service that will require lavish amounts of money with a “guarantee” that it might improve my family’s quality of life.

What?

Many of my readers’ families have been on a food allergy and/or asthma journey for varied periods of time, but the result is the same, a wild and expensive ride.  We spend money on allergy testing (blood and skin), allergy-safe food, epinephrine, epinephrine carriers, antihistamines, breathing treatments, and much, much more.  These are the things our children need to survive.  It’s a matter of life or death, literally.  Many of us sacrificed more than we care to remember to do all of these things.  Yet we are privileged to be able to do so and to be able to care for our children’s immediate needs and we would do it again in a heartbeat.

We spend hours each week researching and studying to keep abreast of the latest industry news.  Is there a new epinephrine dispenser on the market?  Is it safe and effective?  How much will it cost compared to the brand I’m using now?  Is the new peanut allergy blood test so accurate that it can give you peace of mind for your child’s situation?  What is the new technology allergists are using in their offices today and is it right for my child?

We are proactive in keeping our children’s best interests at heart, with their safety first and foremost.   Any food allergy company or leader worth their salt knows this  about the food allergy/asthma parent.  Unfortunately, a few of them use this fact to capitalize on their own gain.

Many seasoned food allergy/asthma parents are used to seeing this push for bigger, better, and more expensive products and we know that talk is cheap and we proceed with due caution.  Parents just entering the world of food allergy and asthma don’t have that experience to fall back on and feel pressure that if they can’t provide that expensive product or service, they have failed their child and ultimately put their safety at risk.  And that just breaks my heart.

We all have our special indulgences, that one product or service we just feel we couldn’t live without.  But… you don’t have to buy the $50 box of twelve allergy-friendly chocolates.  Building a concrete house just isn’t affordable for parents of a child with asthma.  You can buy a plastic allergy warning bracelet instead of that 24K gold bangle.

To the companies and leaders today who tell parents of children with food allergies and asthma that they could be a better parent and do more for their child only if (fill in the blank with expensive and unnecessary), shame on you!  Mothers, fathers, grandparents, aunts, uncles, and caregivers everywhere are dedicated to doing everything they can to ensure the safety and very best quality of life for their children and their families.  As fellow members of the food allergy and asthma community, we expect nothing less from you.

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Learning About UKnowPeanut Testing with Dr. Rob Reinhardt

A month or so ago, I was lucky enough to participate in an online peanut allergy summit to learn more about the UKnowPeanut test for those with peanut allergies.  I learned a lot and have been anxious to share, but wanted to you to hear about the testing straight from the source…enter Dr. Reinhardt, Medical Director of the ImmunoDiagnostics business of Thermo Fisher Scientific.

Dr. Reinhardt was kind enough to do a guest post here on The Food Allergy Mom, so you can learn more about this new molecular allergy test and what it means for individuals with peanut allergies.

A special thanks to Michelle and Dr. Reinhardt at Isitallergy for collaborating to make this information accessible to so many food allergy families!

Check back soon for a similar post from Dr. O’Connor, also a participant in the online peanut allergy summit!

“I’m Dr. Rob Reinhardt, Medical Director of the ImmunoDiagnostics business of Thermo Fisher Scientific and blogger at Is It Allergy. We recently hosted an online peanut allergy summit and I was happy to be offered the chance to write a guest post providing The Food Allergy Mom’s readers with more information about peanut allergy diagnosis and advances in testing technology.

Specifically, I’d like to talk about our new molecular allergy test, uKnow Peanut, an important new diagnostic tool that can help families dealing with suspected peanut allergy to better understand its risk and severity.

The uKnow Peanut test is the first simple blood test that can help predict the likelihood of a systemic reaction. It is a package of component tests, carefully selected to evaluate peanut IgE sensitization patterns at the molecular level. To understand how molecular allergy (or component) testing technology for peanut works, it’s important to first examine the makeup of the peanut.

Traditional allergy tests look for sensitization to the whole peanut. But with molecular testing, we can drill down to pinpoint a patient’s sensitivity to individual molecules within the peanut. This is important because a patient’s level of risk of reaction is directly correlated to the molecule(s) he or she is sensitized to. With this new technology, we can now diagnose and predict with greater certainty, the true risk of reaction for a patient with peanut allergy.

There are currently five allergen component tests cleared by the FDA. Three of the allergen components (Ara h 1, Ara h 2 and Ara h 3) are connected with a high risk of eliciting systemic reactions. In other words, sensitization to these proteins can help predict the likelihood of a severe reaction from exposure to peanut. Another component, Ara h 9 might give rise to systemic reactions.

Ara h 8 belongs to the family of proteins that mainly give rise to milder, localized reactions such as oral allergy syndrome (OAS). 99% of patients sensitized to Ara h 8 alone passed an oral food challenge at the highest dose or had already consumed peanuts without a reaction.

A recent clinical study determined that only one in four children sensitized to whole peanut have a high risk of severe reaction[1]. So component testing means more clarity and perhaps a significant improvement in quality of life for families with children who have been diagnosed. The data from the study indicates that roughly 80 percent of children who are sensitized to peanut are not clinically allergic and may not be at risk for a severe reaction.

Knowing which protein(s) your child is sensitized to can make a big difference. As an example, Dr. Maeve O’Connor, an allergist from Charlotte, NC, shared a case study of her patient, “Margaret,” a 6 year old who tested positive for peanut allergy using traditional blood and skin prick testing. However, a recent episode where she accidentally ingested a granola bar with peanut – without incident – confused her parents.

Dr. O’Connor ordered a uKnow Peanut test and determined that Margaret was positive for Ara h 8, the protein that gives rise to local reactions and negative to those proteins associated with severe reactions. Armed with this information, Dr. O’Connor conducted a food challenge test and Margaret passed.

Margaret was one of the roughly 80 percent of children who are sensitized to peanut and are not clinically allergic, meaning they may not be at risk for a severe reaction. As a result of molecular allergy testing and as confirmed by the food challenge, she no longer has to sit at the peanut free table in the school cafeteria, and her parents can breathe easier knowing her true risk of reaction.

Dr. O’Connor tested another patient, “Thomas,” a 16 year old boy, who had a severe reaction to peanut at a young age and both skin tests and traditional blood tests were previously positive to peanut. His parents implemented a strict nut‐free diet, but as he got older, Thomas was not careful when his parents weren’t around, rarely carrying his epinephrine auto‐injector. The uKnow Peanut test showed high sensitivity to Ara h 2 and Ara h 8, indicating that Thomas is at risk for severe reactions. The positive test findings confirmed his sensitivity to a component highly associated with a severe reaction to peanut. He now understands the importance of carrying his epinephrine auto‐injector and alerting coaches and friends about the serious risks associated with his allergy.   

Every child is different, and so are their peanut allergies. Our hope in educating the online community about peanut component testing is that we can help other families with peanut allergic kids to gain a more complete understanding about the nature of their children’s allergies. And remember, it is important to review uKnow Peanut or any test results comprehensively with your doctor to get the full picture of your child’s level of risk.

For any readers who want to learn more about molecular allergy testing, I encourage you to visit our blog, www.isitallergyblog.com, and connect with us on Facebook or Twitter @isitallergy. Please also feel free to direct any specific questions via email to: isitallergy.twitter@gmail.com

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[1] Nicolaou et al. J Allergy Clin Immunol. 2010;125:191-197 2. Dang et al. J Allergy Clin Immunol. 2012;129:1056-1063.

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