The combination of two recent food allergy deaths; Cameron Fitzpatrick and anaphylaxis have doused us in the real hard questions of why and how? In particular, a conversation grew of why are allergic patients with food allergy action plan are not fully prepared? Are patients not receiving proper information at diagnosis? One question lingering question that won’t leave my mind is how preventable are life threatening allergic reaction deaths. I asked Dr. Joshua Jacobs from the freedigitalphotos.net (San Francisco, CA Bay Area) to share this thoughts with us on this subject. I was curious as to what the allergist thinks or feels when these types of tragedies hit. Over the phone, he was clearly very disturbed and below he gives insight and hope.
Dr. Joshua Jacobs, image courtesy of Allergy and Asthma Medical Group of the Bay Area, Inc.
Guest Blogger, Allergist Dr. Joshua Jacobs…
The death of a child is a tragedy in every sense of the word. I cannot imagine the extent of loss that a parent must feel in this situation. Being a father myself, I have created a mental barrier that does not allow me to even consider such a possibility, yet every day in my office I inform parents that their child has a life threatening disorder. When I detach myself from myself as a physician, I wonder what if I was told that my child could lose their life to a disease process? How would I respond? How would my child respond? I reflect on the responses I’ve seen in my office when giving this exact news to parents. I have seen a spectrum of response from sheer panic to what seems like dismissive behavior but maybe just denial.
image courtesy of Stuart Miles/anaphylaxis
Parents of allergic children receive a written food allergy action plan from our office. The first sentence reads; XXXX has a life threatening food allergy to YYYY. In part, this is so caretakers will take the child’s food allergy seriously but also to remind parents that food allergy can be serious and life threatening. The loss of a child as I previously mentioned is tragic. This tragedy is compounded by the fact that many deaths are preventable. In many cases a small amount of prevention could have saved a life. The caretakers for a food allergic child need to be informed that their child’s life is at risk if they ingest food which contains the allergen to which they are allergic. Luckily, in many cases food allergy action plan is not fatal and most persons who experience it will recover without long lasting consequences (except, maybe a new found respect for allergic reactions). Because of the fact that recovery is by far the most common outcome many adults have a casual attitude toward their food allergies. There are well documented cases in which a food allergic adult has knowingly, repeatedly ingested the food to which they are allergic until on one occasion the reaction is fatal. Certainly, no parent would knowingly place their child in such danger but not being prepared to treat a food reaction is, unfortunately doing just that and is an all too common situation.
Hope for the best, prepare for the worst.
What are the most important things to be on the food allergic parents and child’s checklist?
Know your allergen. Where it is found, other names for it. What other foods are at risk of cross contamination.
Read labels on everything you eat. Even if you have had a food before ingredients can change.
Have aDr. Joshua Jacobsand discuss it with your physician.
Always carry epinephrine (2 doses) that is not expired.
Educating your child to recognize a food allergic reaction and letting an adult know that they are having a reaction is also of paramount importance.
Although these being the top five things on my checklist, the list is not limited to these five. An old adage I like to use is, “Hope for the best but prepare for the worst.” This really says it all when it comes to food allergies. Most of the time there will be a good outcome but if we are not prepared for the worst possible reaction and it occurs, the outcome may be worse than anyone could imagine; the loss of a child.
My heart goes out to those parents who have lost a child in any circumstance. I hope for those who read this, that they will never experience such misfortune. When it comes to food allergy, working with your allergist, continuing to educate yourself and your child, adding to your list and being ever vigilant is your best defense.–Dr. Joshua Jacobs.
One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
This is a wonderful post, Dr. Jacobs! Thank you so much for validating the things I’ve felt in my heart for years! It gives me confidence when counselling people like my father who are stubborn about EpiPens and/or taking their allergies as seriously as they should.
My oldest has an allergy to bug bites, though the allergist we saw here was just willing to dub it as a bee allergy (though it was not a bee sting to my knowledge that he reacted to, and to my knowledge he has never been stung), telling me that I should consider giving him the bee allergy shots since that should help his reactions. He is not anaphylactic, but he does have excessive swelling. My biggest issue with this allergist was that he treated me like I was a paranoid mother with no common sense and that he outright refused to even check him for insect allergies to know the specific bug, relaying to me that it was impossible to know. Instead, he slapped me with scripts (which I knew from personal experience were legit and would help, including and EpiPen, so I filled them), and left me feeling upset and like he was being flippant with my child’s life, since he has been bitten near his face and had difficulty swollowing due to the swelling. Whether his information about not being able to tell the specific bug was true or not, he left me feeling like he was a quack due to his attitude about it all and his lack of respect for me and my children. At any rate, it is my plan to talk to my son’s new primary physician when I see him next and see about getting a referral to a different allergist who I can trust (like the one I saw 1 1/2 hours away – I would gladly take him there).
I say all that to say this: more allergists (and doctors in general) like you are needed in this world! It is obvious that you care, that you are not in it for the money and that you truly want to help. Thank you! You give me hope that, if there are 2 such allergists in the world, there should be more…and may people always be able to find those like you and the great allergist I know when we need them!
Caroline, thank you for having him do this post! 🙂 I have shared this on my page under my Anaphylaxis section, siting my source. I hope you don’t mind! I find it information beyond worthy of sharing!
Julie, it feels good to be validated…we are NOT crazy! Okay, sometimes I am a tad eclectic-I’ll admit to that, but I firmly agree with being prepared for the worst. On a side note: Dr. Jacobs is very inspiring, he used to travel from California to Reno, NV, on his own dime, to lecture our local pediatricians and families regarding managing food allergies. Eventually, our area grew and new wonderful allergists moved to town so Dr. Jacobs comes up less frequently, but has made relationships with our allergists. As he once said, it feels good to pass on patients to other physicians he feels confident about!
Have a great day Julie.
Thanks, Caroline! The allergist I saw that is an hour and a half away is very much like Dr. Jacobs. Wonderful men who make you feel heard and let you know that they care about you and your health, not your money. It’s a wonderful find! If I ever hear of anyone looking for an allergist in his area, I will definitely be recommending him, just like I do the allergist 1 1/2 hours from me! I feel that’s the least I can do for such marvelous people!
Julie, we travel 3.5 hours to see Dr. Jacobs, but we also visit family in the area too. We have wonderful allergists in town too, but our children are very attached to Dr. Jacobs, so it is worth the trip.
I understand completely! I hope that one day we will find a good allergist a little closer, and maybe that will happen sooner than later, but for now, I think I will see about getting my oldest into the allergist I trust. 🙂 It would definitely be worth the trip! We shall see!
Great article! Now we need advances in cloning, so we can have more Dr. Jacobses all around the country!
Haha! I’ll make sure I tell him that! He’ll smile for sure!
I have to remember this for myself. I carry both histamine and epinephrine whenever I am away from home. And hope for the best, prepare for the worst. Forewarned.
It’s a good motto!
Thank you so much for this! I had posed the same questions to our allergist but have not heard back.
Glad you enjoyed the post! I’m hoping Dr. Jacob’s joins our community more often.
Thank you for this, Caroline! I’m always stunned by parents who don’t carry epinephrine. Awareness is so important!
It happens far more often that not in my world. It is very scary.
Great interview, Caroline. I’ve been a bit haunted this week after reading the story of the college student who died after eating a cookie: http://abcnews.go.com/Health/Allergies/college-freshman-peanut-allergy-dies-eating-cookie/story?id=18723777#.UUxRG1ewc-0
It’s heartbreaking!
Dr. Jacobs’ line, “In many cases a small amount of prevention could have saved a life.” is really sticking with me. So true…
That sentence is what is keeps sticking to me too: a small amount of prevention…he was not talking huge dramatic steps here. We saw a child psychologist when my son was five years old due to unsubstantiated fears. His mantra was that after the first three steps, a person experiences diminishing returns and can actually complicate the issue they are trying to prepare for or manage. Therefore, my son had a three point safety plan: carry epinephrine, if he doesn’t feel the adult in charge is capable then he asks to leave and if there is a toddler (think allergen smearing) then we leave also. No questions asked.
He still follows this plan today.