Written by Michael Pistiner, MD, MMSc
“We were going through the exact thing that I had heard about in so many office visits – high emotions, grasping at alternate scenarios, and relationship dynamics influencing judgment and action.”
Seven years ago my wife and I introduced walnut to our almost 4 year old son. I was in the midst of my pediatric allergy fellowship and we were following all of the current guidelines of the time: delayed introduction to potential allergens. With those first bites he seemed to love it. What was not to love? It was a chewy chocolate bar with tiny pieces of walnut mixed in. After about thirty seconds he commented, “I can’t get the taste out.” We thought that maybe the texture was bothering him and told him it was ok to put his fingers in his mouth to pick out any stuck chocolate. He seemed panicked and agitated. Within minutes, he vomited. He began crying and pulling at his shirt collar. Then it was our turn to get upset as we witnessed his reaction progress to sneezing, nasal congestion, itchy ears, coughing, and ultimately hives. Even as his reaction was worsening, my wife was not fully convinced that this was an anaphylactic reaction. She thought that maybe he was working himself up over a strange texture and that I was blowing things out of proportion and suspecting a reaction because of my profession. “You’re such an allergist” she said. We were going through the exact thing that I had heard about in so many office visits – high emotions, grasping at alternate scenarios, and relationship dynamics influencing judgment and action.
“…my job and special interest in food allergies collided with my personal life.”
In a bizarre twist of fate, my job and special interest in food allergies collided with my personal life. I was hurled from the role of pediatric allergy fellow, seeing patients in the clinic, to that of a parent experiencing the heart-wrenching sight of my own child suffering through anaphylaxis, life threatening allergic reaction. After he recovered and my wife and I dealt with the initial shock of it all, we dove headfirst into the day to day management a child with food allergies.
“It took my wife and I about two months to get comfortable…”
Since that initial event I have seen firsthand how challenging it can be to care for a child with food allergies. It took my wife and I about two months to get comfortable with adjusting to our new management strategies. Prior to that I was always a fly by the seat of my pants kind of guy and spontaneous when it came to daily life and activities. This has obviously changed. We have needed to make modifications in our daily family routines. We have made mistakes along the way and have experienced some frustrating and awkward situations. Just like everyone else, relationship and social dynamics complicate matters. Being a pediatric allergist doesn’t change the social dynamics in our family life, friendships, school community, or the rest of the world that we interact with.
Advocacy and education
Advocacy and education have become very important parts of who I am and what I do. The creation of education tools and resources for families (kids and parents), schools, eating establishments and the surrounding community is a passion; as is speaking out and advocating on behalf of families with food allergy, especially in the school/daycare, healthcare and restaurant settings.
“No one has to do it alone.”
I have learned so much from my son, family, patients, colleagues, advocates, educators, and bloggers; our entire food allergy community. It is my hope to share some of what I’ve learned as well as some of the challenges and triumphs that I’ve experienced. We can all keep learning from each other and help one another so no one has to do it alone.
More to come……
This is the first of potentially many blog posts where I’ll share my perspectives as advocate/educator, pediatric allergist, father, and member of our food allergy community.
For more on recent collaborations and projects please see Two Health Care Professionals Chat About Filling Needs in Food Allergy & Anaphylaxis Education.
Michael Pistiner, MD, MMSc is a pediatric allergist for Harvard Vanguard Medical Associates, as well as a voluntary instructor of pediatrics at Boston Children’s Hospital. He is the father of a child with food allergies and serves as a voluntary consultant for the Massachusetts Department of Public Health, School Health Services. He is a fellow in theAmerican Academy of Pediatrics, where he is a member of the Council of School Health and the Section of Allergy & Immunology. He is also a member of the American Academy of Allergy Asthma & Immunology, where he is a member of the Adverse Reaction to Food Committee and Co-Chair of the Food Allergy Awareness in Eating Establishments Subcommittee.
He served on a team assembled to implement a law designed to increase food allergy awareness in Massachusetts eating establishments and is chair of the Medical Advisory Team for Kids with Food Allergies Foundation. Additionally, Dr. Pistiner serves on the board of Asthma & Allergy Foundation of America, New England Chapter, and is a member of the National Food Allergy Management and Education Advisory Board. Dr. Pistiner is the author of Everyday Cool with Food Allergies, a co-author of Living Confidently with Food Allergy, and is co-founder and content creator of AllergyHome.org.
This happened the very first time you gave him a nut? Is there a history of food allergies in you family? Is he allergic to anything else?
Weeks prior to that, he tolerated peanut butter and almond products. His clinical reaction was to walnut and he subsequently tested positive to multiple tree nuts on specific IgE testing (blood testing) including walnut, pecan, hazel nut, pistachio, cashew, Brazil nut. He has since developed milk allergy.
Although his first known oral introduction to the walnut was the day of his reaction, my wife and I regularly ate tree nuts in our home prior to that.
Congratulations on your new blog!
Thanks Lynda!
I, and probably so many others, can relate to your son’s reaction and your wife’s response to it. I think your blog is going to be a great tool for so many parents! Thank you for sharing!
Just out of curiosity, how old is your son now and do you eat allergenic foods in your home?
Thanks Elizabeth.
He’s 10. We currently keep any tree nuts in a plastic Tupperware container on a top shelf. I used to occasionally eat tree nut products in the home but after catching myself wiping my fingers on a dish rag and other potential cross contact snafoos, I found that I’m a bit too sloppy. My wife on the other hand can pull it off.
Hello from Charlottesville Va! My daughter has several food allergies and I am excited to follow your blog and hear from other parent. We are currently working with a great allergist at UVA and we are going to start a trial were they will try to desensitize her to her peanut allergy.
This line is so important:
“We were going through the exact thing that I had heard about in so many office visits – high emotions, grasping at alternate scenarios, and relationship dynamics influencing judgment and action.”
This is exactly what we do, how can we fight that urge? I was reading elsewhere that cognitive behavioral therapy may help – what do you recommend for patients needing to get over the mental road blocks to acknowledging a reaction is happening and that they need to act?
Great question Homa. I like to ask my patients, when developmentally appropriate, what they think about treating an anaphylaxis. I try to address any and all concerns and if there is a misperception I directly address it and correct it with re–education. Common myths that get in the way are auto–injector needle length, safety concerns about epinephrine, not wanting to have to call an ambulance. Also important is practicing administration, reviewing action plans(good tool to help recognize reactions that require epinephrine. Kids can also benefit from practice scenarios/role play. Take a peek at http://www.allergyhome.org/handbook/table-of-contents/recognize-and-treat-allergic-reactions/being-prepared/ Hopefully it helps, it was created just for this purpose.
Exactly! This is from a mom ( as a pediatric RN), who waited TOO long,dealing with all of the emotions above, and subsequently had to deal with the horrors and guilt of a night in the Peds ICU with an intubated 3 year old!! USE YOUR EPI PEN guys! Know the symptoms, and use your epi pen!!
Courtney, Thank you for sharing your powerful story and message.
Your website is a welcome addition to the Food Allergy Community! It is clear, concise, informative and easy to follow for both the layperson (teachers, parents, grandparents) and medical personnel. Making it a ‘go to’ resource for all. Keep up the good work ! It is very appreciated! ( The webinar was enjoyed, as well. )
Caroline, Thank you for the kind words.
So great to see an Allergy Home blog! Congrats! Well done! Whenever I hear your son’s story, it always resonates with me for many reasons – personally and professionally. As mom to a son who experienced acute, intense ‘textbook’ anaphylaxis to a lick of peanut butter at age 4. And also as a food allergy specialty nurse who has worked with so many patients/families (and their communities) living with the diagnosis and the rigors of related daily management needs. Honored to collaborate with you Mike and to help contribute to the mission of AH. Keep ‘enlightening communities with food allergy awareness’!
Thank you Anne and thank you for the support!
My 3 yr old son suffers from Peanut and Milk Anaphalaxis reaction. He has other food allergies as well but doesn’t have Anaphalaxis with them. It is good to see this blog, and have another good resource.
I am glad your son is ok. I had a own scare with my three year old daughter who tried a bite of her sisters butter crossant. She is severely allergic to dairy, brazilian nuts and eggs. She started coughing and vomiting, i was in denial. Thank God my husband was here to give her the epi pen. I am still not over the scary experience, everything happens so fast, i feel i need to be better prepare for when it happens again. To me, i hope it never does.
Hi Carmen, take a peek at http://www.allergyhome.org/handbook/table-of-contents/recognize-and-treat-allergic-reactions/. Please let me know if it helps.
Hi! Great to see you blogging. I’m sure your perspective will help many others and provide a wonderful resource for the community.
Thanks Tonya!
Thank you for sharing your knowledge with all the hats you wear. What a blessing you are to others in the allergy community.
Thank you.
Thank you for recognizing the unique position you’re in as a parent and allergist and using it as a platform to help people with food allergies, especially our kids. I can’t wait to read more.
Thanks Anne!
Thank you for using your position and education to further our cause. I have two children with nut allergies and STILL cannot believe it “happened to us”. We had a similar experience with our son at age 4. It was horrifying. We also have an 11 year old daughter, also with nut allergies. She says she wants to be a doctor so she can be around lots of people who can help her in case she makes a mistake reading a label. It wrenches and warms my heart at the same time.
Hi Tracy, It can definately be challenging. Especially at time in development when kids are becoming more self reliant. Can see some anxious feelings arise. Take a look at http://www.allergyhome.org/handbook/table-of-contents/food-allergy-challenges/managing-anxiety/ Definately consider reaching out to your doctor and checking in. Hang in there.
I am glad that your little guy is ok but I want to say thank you for writing this to show us how a point of view can change in the blink of an eye. So many are relying on just the facts but it’s just as important to look at allergic reactions at a one-on-one basis. Although this was something that I wish had never happened to your son, it was ultimately something that brough you to where you are now and I appreciate all that you do.
Thank you for that. It means a lot.
You’re such a valuable resource to the food allergy community and it’s great to have your voice join us in blog land!
Thank you so much.
In your practice have you seen a connection between EoE and nut allergies? I have an 18yo with a peanut/tree nut allergy since birth, and a new EoE diagnosis. We have been following an elimination diet for a year and adding back in allergens after each clean endoscopy. We think the EoE is caused by dairy 🙁 as we are adding soy back in now. Any ideas on where to find more information on these possible interrelationships is welcome.
Hi Lynn, Yes there is an association between food allergies and EoE. For a start at some of the information that you’re looking for take a look at http://www.eosinophilicesophagitishome.org/ .
Just stumbled across this site, and so glad I did! Can’t wait to start reading and learning. My 15 month old granddaughter has dairy, egg, soy, peanut, and tree nut allergies, so our latest struggle is finding things to feed her, as her weight has dropped below the 10th percentile. You can’t reason with a 15 month old! The latest advice as of yesterday was to go back to “trying” Neocate or Elecare formula, but not optimistic as they are just nasty and we had no success before with them. Sigh….. Again, thank you! Looking forward to reading more!
Good luck Kathy, hoping that your granddaughter starts gaining. Thank you for the kind words.
Thanks for your blogger I think you the first doctor who found out my then five months who is now 6 yes had food allergies it is still a challenge because he has severe food allergies to the extent I get Frustrated with everything since there is not much to alternate with stuff he allergic with. Tx