What an unbelievable week: two young men die from their peanut allergy only days apart. It’s hard to know where to begin sharing, learning and supporting. For me, not only does my heart break, my stomach hurts but I’m beginning to feel a bit angry over why was epinephrine not immediately available to both victims? Lack of education as a patient, unclear diagnosis, too costly or simple risk taking? Nevertheless, their families are hurting today and our community cries along side with them. We don’t know personally know Chandler Swink, from Michigan and Jaime Mendoza from Wisconsin, but they are part of our food allergy family. Their deaths will save lives right at this very moment as we all learn and share with our family and friends. Update 12/2: please read a beautiful comment left by Chandler’s grandmother’s. It is touching, inspiring and beautiful. The Swink family is a very special family and Chandler was an incredible young man who continues to make a difference. I personally felt the Swink family’s love and concern for all of us living with life threatening food allergies after reading her words. By bravely sharing these tragic stories lives are being saved. This is truly a miracle to me.
Chandler Swink and family. Photo courtesy of Swink family Go Fund Me
After being in a coma, college freshman Chandler Swink was removed from life support. Unfortunately, Chandler was at friend’s apartment while peanut butter cookies were being baked. Either he had experienced cross contact from the cookies to food he was eating or he received the cross contact from someone who was touching the cookies. As soon as the reaction started, he went to his car for his epinephrine, injected himself and then drove to the hospital, where he was found unconscious in the parking lot. Chandler’s mother shared with the Oakland Press News that her son was very careful and even experienced bullying by both parents and students due to food allergy management policy adopted by his school district in, “Oakland University in Coma from allergic reaction to peanuts”. The adult bullying is a conversation for another day, and we will go there (insert disgusted look)!
Jamie Mendoza, photo courtesy of You Caring Fundraiser for Jaime
Jaime Mendoza ate a cookie that he thought was chocolate chip. Per reports, it was a peanut butter cookie. He immediately reacted and his friend drove him to the hospital. He ate that fatal cookie on October 15th, 2014 and had been battling for since life. It appears that he did not carry epinephrine since his past reactions were mild, only resulting in hives. Jamie was only 16 years old and he, like Chandler had suffered brain injury and was taken off life support recently.
What we need to talk about…
What I truly have trouble swallowing is how can an intelligent young college student aspiring to become a nurse experienced a series of things that went terribly wrong that lead to his death? I feel as if we have failed him and our community with lack of proper education. BUT, this is where he gave his life to bring these lessons and discussion points to you and I. We need to look at Jaime’s situation as well since we hear that statement far too often, “his past reactions were always mild…he didn’t carry an EpiPen® epinephrine auto-injector“. All of these errors cost these young men their futures and has brought indescribable grief to their families and friends. We can learn and make a difference in their memory.
Lessons to share and discuss right now..
- Always Carry Two. Always carry your EpiPen® or Auvi-Q® on your body–at all times. Two epinephrine injectors is optimal due in case there is a biphasic reaction and a second dose is needed before the ambulance arrives. Keeping epinephrine in cars risks the effectiveness of the medication. I wonder if William forgot his Epipen in the car and it froze or if he always kept it in the car believing winter temperatures were safe. Do pharmacists share temperature information when dispensing epinephrine? I don’t recall, but maybe this is something we need to urge our pharmacies to do?
- Always Carry. I question if Jamie’s diagnosis was from a board certified allergist and if he received proper medical guidance to carry epinephrine? Or, was he told to carry and he felt it was wasn’t necessary since past reactions have only been hives. If cost is a factor, ask your physician to direct you to clinics and financial support.
- Lay Down. Avoid walking or moving around. Lay down and ask others to retrieve your epinephrine auto-injectors. Stay laying down until the ambulance arrives. It sounds like both young men walked to cars. I’m not a medical professional and will be hosting a guest post soon from an emergency room nurse who explains the importance of laying down and keeping the blood flow to the heart. As always, check in with your physician regarding protocol for managing a life threatening reaction.
- Don’t Drive. Call 9-1-1 for help and do not drive yourself. Never, ever be alone. Just as in Chandler’s situation, he found unconscious in the hospital partking lot, had someone been with him would his story ended different? Never walk or drive anywhere alone if you believe you or the person you are with could be experiencing an allergic reaction.
- Leave if Exposed to Allergens. Did Chandler know his friends were baking peanut butter cookies? What worries me the most for my own children is that the people around them might not fully understand cross contact. I read a facebook post about a parent watching an employee touching nut products that walking over the cash register and touching money without changing their gloves. Understanding cross contact is critical and often difficult to share.
- ASK MORE QUESTIONS. If you are reading this post, then you are on the internet, so do your homework. Search medically vetted websites such as Food Allergy and Research and Education (FARE), Kids with Food Allergies Foundation (KFA) and the Food Allergy and Anaphylaxis Action Team (FAACT) for more information. Here is where you’ll learn that grew up living next to Berkeley, California: Question Authority. Question your or your child’s diagnosis, learn all that you can. Seek out information and second opinions if necessary. Don’t wait for a tragedy to say, “I should have…”.
Donations
Jaime Mendoza
Chandler Swink
Our hearts, love and prayers go out to the Swink and Mendoza families.
The comment below was written by Judy Swink, Chandler’s grandmother. It is so touching and provides insight. I copied and pasted it into this post since I must share
Thank you all for sharing your love and prayers for Chandler Swink and Jamie Mendoza. Chandler is my Grandson, the son of my son Bill. When we recover from this tragic loss and grieving we hope to join your allergy community and find answers that we all need, perhaps pass laws, whatever we need to do to protect these children. Senator Marty Knowlenberg is our family friend and was at Chan’s funeral. The news of Chan’s death has gone global, and viral on facebook. He has touched many, and raised much needed awareness of the deadly allergies. Chan’s death has resulted in many miracles already and I am positive will result in many more. He did not leave us without changing many things and will help us all from the other side. He has brought many together with love, he is changing the hospital entrance and direction to emergency, he has raised awareness of allergies, perhaps saving many lives this Christmas season, and motivated many hundreds of people for change. Chandler was by no means ordinary, he was loving, he was funny, he was smart and an athlete, he was our everything. He was deeply loved by everyone who knew him. We will together work for change, we need answers, why are allergies on increase, why are many so deadly, how do we protect those who have them.
Chan was alive when he first drove himself to the hospital, he had injected the EpiPen, the cartridge was in his car, then he walked up to the hospital main entrance, it was locked, he walked to a second door, it was locked, with no attendant or guard in the front of the hospital, the main entrance was lite up like the entrance to a hotel, however it was locked up tight. The emergency entrance was in the back of hospital, very poorly marked. Chandler was found on the ground by the front doors, by security cameras with no heartbeat and not breathing, no pulse. With CPR, they revived him and put him on life support and in an induced coma and cold state, his body remained alive for one week. After the week, they said he was basically brain dead and life support was terminated. Hundreds maybe even thousands were praying for Chan, 5 priests prayed over him , a faith healer laid hands and prayers over him. The doctors and we his family did everything we could to have him wake up. We prayed so hard for a miracle. The miracles we will receive by his death will be great, many will be saved by our” Chanman”. We hope many will join us and save many children by his story.
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!..
I am so sad for these two boys and their families. At my son’s first appointment with an allergiest after his allergy testing, the allergist would not give me an EpiPen as my son’s previous reactions had only been hives around his face and neck. I later questioned that and had another doctor prescribe an EpiPen for him. He has had three reactions since then when using an EpiPen would be recommended. I didn’t know enough the first two times to use it, and am so grateful that he is ok. We just used his EpiPen for the first time last week. I hope that more education is done for not only patients, but allergists as well. Having an action plan in place and following it is so important.
Oh this makes me so sad! These poor families what a terrible tragedy! Thank you for writing this and I am a little mad too…. I agree with all the questions you wrote and also wonder if boys these days are more self conscious of carrying the “pens” around. What I mean is girls have purses and bags and carry lots of “stuff” so the pens would be easy to have on their person…. Boys on the other hand(well atleast my 15 y.o. son) carries his phone, mechanical pencils and soon will be carrying a set of keys. I wonder if there is a way to add an epipen to a key chain? Would that be more discreet for a boy? Or maybe it isn’t feasible but I just wonder if that is why the epipen was in the car. Thanks for blogging I am always catching up thru your blogs!!
Oh, my this is terrifying. My son has been diagnosed with MILD allergy to peanuts and wheat. I’ve not ever been really concerned about them because he only has mild reactions (snotty nose the next day) if exposed to wheat. I have never been aware of him reacting to peanuts at all. We have recently allowed him to eat small amounts of wheat because he had some and didn’t react at all. We asked the doctor and she said he couldn’t outgrow his allergy so we’ve been trying to be more careful to avoid wheat. There are times that I have allowed him to eat a biscuit or a roll when we have gone to dinner because I felt sorry for him for missing out on something he loves so much. Now I am rethinking this. How tragic these stories are.
These stories are horrible beyond words and honoring these young men by educating ourselves and others is what I believe is key. Also, seeking second opinions and more information is permanently on our to do list no doubt. I feel that we never become experts, but instead, we are constant learners as protocol and information change.
Caroline,
I feel that fate and blessings brought me from a lucrative professional career as a CPA with a tax practice to owning an allergen free (not all allergens, since there are so many, but many of the big 8) bakery making treats for adults & kids nationwide, where I am not getting rich (financially), but am rich in friends like you and more knowledge about allergies than I have ever had in my 21 year old college daughter’s life with a severe peanut allergy and asthma. When Jaimee was younger, I was her protector…a mom with a super hero cape. As she’s grown older and more independent (and not wanting to be babied or appear “different”) I had to trust that I had taught her well. I realize that when I became involved in this community with the creation of my bakery (this community frankly did NOT exist on this scale back then (no Internet! No Facebook!) I almost didn’t want to read of scary reactions online. I’ve never, ever been a “stick your head in the sand” person, but a part of me wanted to believe with my daughter bring an adult, the worry and continued need for education was over. WRONG! Do you know I did not remember that one should lie down when having a reaction? When I had an anaphylactic reaction to sunflowers 12 years ago, and my friend was saying I was overreacting, I got in a car (with only a child’s dose of Benadryl!) and drive myself to the ER? I DID realize en route that I needed to call 911 and stay on the line. At the hospital I was appalled that the hospital took me to a billing agent for insurance questions, as I felt a surge of body chemicals signaling a feeling of dread, red splotches, throat closing. I demanded to be seen, and they put in an IV and refused my seeing a dr or getting even more Benadryl (much less an epi) for 2 hours, saying if I “crashed” they now had an access point (IV) to treat me?! My daughter is a 4.2 GPA student whose professors at her prestigious private college state her skills exceed those of many of her PhD professors, yet this same “child” of mine, would as recently as a year ago gone to restaurants and taken risks and NOT had a single epi pen? She complained of the cost (I paid!) for 4 epis when she went abroad last year to Sweden for 5 months) but begrudgingly took them. Thanks to my recent re-education by wonders like you, Grateful Foodie, and my renewed involvement and passion in being part of this community (I think I had liked thinking I didn’t need to be “one of those people”) I know much more about staying safe, and just yesterday when eating out I saw my daughter carrying not 1 but 2 epi pens?!!! I have more insights about this, being in year 4 of my daughter bring in college, and could write a “book” but suffice to say I am thankful for all my fellow food allergy sisters and brothers nationwide. Together we can learn, educate, share, and save countless lives. I’m in!!!!
Nancy, well said! We are all constantly in re-education mode! We either become too comfortable, forget or thinking that our kids are doing just fine. It’s staying constantly on top and learning. This is that one interesting disease that everything changes. What we know today, will change tomorrow. I ate all of my son’s allergens and he is allergic. I didn’t eat my daughter’s allergens and she is allergic. Protocol and knowledge changes. I always gave Benedryl first and now it’s second. This is soooo confusing needless to say. I’m grateful for this community, where we can explore, learn and talk together.
Thank you for writing such a tasteful piece
It is very painful and scary to discuss these tragedies since this is what we fear most. But it’s important to for us to explore our own learning and education of the public regarding life threatening food allergies. I just hope both families are able to feel the love and support from the food allergy community.
I am very sorry to hear about these deaths but I am not surprised about teens, especially boys, not wanting to carry an Epi-Pen. This is why I think the Auvi-Q is so valuable. The introduction of an epinephrine that is small and can be carried in a boys/man’s front pocket is so terrific. The Epi-Pen with it’s long cylindrical shape is so hard to carry and must be attached to a belt in a carrier. Who wants to carry this and draw attention to it dangling?. My son in college is now so happy to carry his Auvi-Q everywhere now that he can fit it in his pocket! He even put on his medical bracelet that his Auvi-Q is in his left front pocket! The problem is that our insurance will not pay for the Auvi-Q so now I don’t know what we will do as it is very expensive and I am afraid that if we are stuck with the Epi Pen, he will not carry it. (I am not affiliated at all with Auvi-Q. I just want my son to be safe! And, this works for him!). I resent insurance companies deciding which epinephrine my son can carry. I can see my son leaving his Epi Pen somewhere too because it is embarrassing for him to have, Won’t fit in his pocket so he can sit down, and must be carried around his belt. If Epi-Pen wants the full market they should come up with a version that will be convenient!
Hi Jeanette,
Regarding Chandler, we don’t know if he simply forgot, etc, but my teenage son carried his Epipens and I worried sick about them falling out of his pocket since they are so bulky. My insurance does not cover any auto-injectors so we are cash pay. Needless to say, I purchased him Auvi-Q when his EpiPen expired, which he is happy about. He can fit two Auvi-Q in his pockets easily. I like Julie’s suggestion from below about a key chain product. She is right, girls have it easy. My daughter carries a purse (she is 11) while at that age, my son carried a full sized back pack. I’ll be soo happy when that glorious day of finding a cure arrives!
Jeanette- You may want to contact Sanofi customer service or look on their website for auvi-q there is a way to get help paying for them. Caroline also- there is a form for medical necessity that I don’t know if you’ve tried with insurance (I have to confess it’s the first I’ve heard of all injectors not being covered but of course I don’t know every insurance ? Perhaps work with allergist for medical necessity also?)
Thank you for your precise information about response. This tragic few days makes us ever more vigilant.
Liz, I will look into that! Thanks for the tip. I’m insurance hunting right now. My hubby has his own small business, so insurance for individuals is rough. Thank you again for the tips..I’ll ask about the injectors being medically necessary. I truly never thought of that.
I am so terribly sorry for these two families and for others who have lost their loved ones to peanut and other food allergies.
I have two peanut allergic sons. The first was taught since he was diagnosed at a year old, and the second was taught since birth, that certain things just can’t exist in their lives. Being embarrassed, being afraid to say no, caving into peer pressure, making assumptions that an ingredient label hasn’t changed since the last time they read it, and wanting to try something new and tasty, knowing that it is more than likely safe. None of these things can happen for my children. The words “probably safe” and “the chef thinks it’s okay” are never good enough.
They know they won’t starve. There is plenty of food they can eat that has definitely not come into contact with peanuts, and manufacturers of tootsie rolls and snackwell cookiess, which quickly come to mind, deserve a tremendous amount of thanks for adding that picture of the crossed out peanut on their package. Restaurants like Jimmy Johns who throw down new paper, put on new gloves, and take out clean utensils are establishments that my family will keep coming back to. Sometimes my boys may have to wait until they get home before they can enjoy a tasty meal or a treat. And that’s life for them.
Many people think that my kids take things to the extreme. Good friends don’t question it, and simply support whatever we think is best. And some people think it’s a shame that the boys miss out on so much unneccesarily. But the boys were taught not to care what others think. There really is no such thing as “being over the top with peanut related fear” because even with complete avoidance and diligent label reading, accidents are simply inevitable.
My oldest son, when he was very young and we didn’t know as much as we do now, had four serious peanut reactions consisting of hives and vomiting. Thankfully, he has had none that have caused respiratory issues. He has about two hours before he begins to react. They both carry their AuviQ’s, along with the knowledge that the next reaction can be entirely different and potentially worse and quicker. History does not necessarily repeat itself with food allergies.
They’ve missed out on a lot of edible treats and likely will never be overweight. They simply don’t eat at the homes of friends, unless of course the friends are close enough to be considered family. And even then, their guards are always up because their guards absolutely must be up. They didn’t have pumpkin pie for Thanksgiving, even though I bought one clearly labeled as safe. They’d probably love pumpkin pie, but they prefer to stick with food items and brands that they are used to. Or homemade here at home. No one can convince them otherwise. And speaking of Thanksgiving, I am actually very thankful for that.
They will always have each other in this. There’s sort of a bright side. As is the fact that they’ve both developed a tremendous amount of willpower and caution that extends to many other areas of their lives.
My heart goes out to Chandler and Jamie who sound as though they were also very careful, and are no lessed loved by their parents than our boys are by their Dad and I. Accidents are just that. Accidents. Tragic when they are children. God Bless Chandler and Jamie.
Kay, thank you for joining the conversation. That is one thing that really breaks my heart for these boys, they were doing all the right things in life. Accidents do happen though and I’m queen of that! I just had this conversation today with my daughter about how this is her life. So she didn’t get hot chocolate last night. Avoidance was a far better choice than risking a life threatening ER trip. This is just who they are. I keep trying to tell her to be who she is. It’s a tough disease and you are good mom for teaching them from day one how manage. We won’t be at their sides forever, so teaching them how to make great choices is the best we can do. Thank you for sharing and I hope Chandler’s and Jaime’s family feel the outpouring of love from our community.
If you aren’t near your epi pen, one thing you can do asap is try and induce vomiting. This saved me life more than once as a child.
To answer a question you posed here, our pharmacy has never given us any temperature guidelines on our epipen. I know what they are because I’ve done my own homework. Second, a good friend’s son was diagnosed with a “mild” peanut allergyblast year. When I asked her about what her doc had said in regard to the epipen she just looked at me very confused and asked, “Does he really need one of those?” The doc has not given them an Rx for a pen. I told her to demand one,or to find a new doctor. I’m not sure regular pediatricians fully understand the gravity of a food allergy.
Atomic Mom, thank you for posting. I only new about temps thanks to a nurse who explained that to me the 2nd day after diagnosis. I also agree that many physicians are not as current about the science behind predicting allergic reactions or should I say the lack of science. This is such an unknown and every time I now hear that statement: my doctor said it’s not severe, I share Georgina’s brave story about losing her son Gio and the instructions she had received too.
I meet parents & children with “mild nut allergies” all the time, which just leaves me scratching my head.
I wonder if part of the “no epipen” issue with various families is that perhaps the pediatricians aren’t as educated or rely on the allergists to inform families? I remember the day we found out my son was allergic to peanuts. He had some symptoms that led me to believe he might have some allergies (eczema and frequent hives). So I gave him peanut butter in the parking lot of the pediatrician’s office on the day of a well-baby visit. He immediately had hives and began vomiting. Anyway, my ped immediately checked him out (heart, breathing, etc) and referred us to an allergist, stat, because “nuts are in everything” and “you need an epipen.” My response? “You mean you can’t prescribe that??” It took a month to see the the allergist, and quite frankly, I didn’t want to go a single hour without an epipen. Needless to say, when I asked the question that way, my ped wrote promptly wrote out a prescription for an Epipen.
Gabby, I know exactly what you mean. After my son experienced a mild reaction the pedicatrician sent us ASAP to the allergist and even said he’ll call if we can’t get in with one day. Unfortunately, many of the other pediatricians in my town didn’t get this. So we asked for an allergist to speak to them during one of their monthly pediatrician lectures. This was 14 years ago and things have clearly not improved as much as we would think. BIG KUDOS to you Gabby that knew how to ask the right questions!!!! Bravo to families who protect their children–your family is very lucky!
Andrea: it sounds like you are seeing a GP it NP, not an allergist, about your son’s allergies.
An allergist would be giving your son skin tests to determine his allergies and would inform you that YES indeed it is possible to outgrow an allergy.
It sounds like your medical provider doesn’t understand the difference between a food intolerance (celiac or gluten intolerance, a lifelong condition) and IgE-mediated “true” allergy, which can indeed be outgrown! There is another *major* difference: mainly, that an EpiPen is not the treatment for the lifelong condition of gluten intolerance. If he is eating buns (!!) and feeling ok, it sounds like that might be the confusion. Please get skin testing by a Certified allergist so you know what you are dealing with! Treatment of the two conditions is very different.
My son has a severe IgE mediated response to wheat, confirmed by skin tests. He requires an Epipen for any exposure to wheat (and his reaction is terrifying ). Our allergist has told us -and we have read (FARE website, etc) — it can indeed be OUTGROWN: in fact, we go for testing each year. Kids often outgrow true IgE allergy to wheat. So if it is an allergy, not intolerance, all the more reason to see an allergist.
A certified allergist can give you more information.
I echo seeing a board certified allergist! My children have outgrown several allergens. There is so much that we don’t know about food allergies that using a specialist, who often keeps up to date on information is key. You can search the AAAAI.org website to find an allergist. They offer a link to search by zipcode. I’m not at my computer and I keep loosing the link!
these stories send shivers down my body as I think of these children who passed away, their families, and my two year son with severe allergies to all nuts, eggs, sesame and sunflower seeds.it is 24 hour worry and those who do not have a child with allergies can seem to understand the severity of what it is like… Nor do they seem to want to! I did not choose this for my boy… Nor am inexaggerating… But this is how I am made to feel! I will continue to tell restaurants to change gloves before making his food, etc etx until there is a better handle or cure for our kids! My heart goes out to these children!
Lauren, We need to stay diligent and the key word here is learning–for us and especially for those who are in our world. I am happy to wait for that one day that Food allergies is a common everyday word and we’ve all–those with and without food allergies have found a common path to travel.
My grandmother had severe allergies to more foods and products than I can count. I learned several things from her. Do not eat out. That is the first rule that kept her in our lives for almost 80 years. Always make your own food. Rule two always call ahead. Before you go anywhere call ahead and ask if they are cooking, can a vent fan be turned on, how about pets, and a million more questions. Variety is not the spice of life for someone with severe allergies. Oh and as soon as epi pens became available they were always with her. And everyone who was with her knew how to use them.
I hear you, Caroline! Great post! I will definitely be sharing it along. I would love to know the answers to some of those questions, too.
Julie, I’m hoping to continue to find solutions and then include them as resources on my site. The challenge here is that we are learning the protocol changes or to be honest, we just don’t know. If it wasn’t for Tricia, who is writing a guest blog, I don’t think I would have understood the reality of laying down during a reaction.
I had never heard about that either. Truth be told, Caroline, my son has excessive swelling reactions to bug bites at times but his reactions are related to his Hashimoto’s not an allergy (autoimmune reaction vs. immune). He does see a board certified allergist and was told that the EpiPen was not needed because the cause of his reactions was different and he was not at risk for anaphylaxis. However, once my son’s swelling starts, if it’s going to (he doesn’t react consistently or very often), the only thing that will stop the reaction is generally a steroid. It has never been an all over reaction or one that caused breathing issues, even when bitten near the face, though I do have concerns that if he was bitten on the neck that that might cause tightness in his throat, which would not be ok, though not necessarily deadly (not that I want to take that risk, mind you). Anyway, we see him again in a few weeks, and I intend to double check on the EpiPen thing. The ones we had were expired and the wrong dose, so he would need replacements if he decided we should have them on hand.
When I read things like this article, it makes me wonder if anyone who has ever experienced hives or any kind of reaction from food or bites or whatever – no matter WHAT the cause of issues (autoimmune or immune/allergy) – should carry an EpiPen or not. I am just thinking it would be better to be safe than sorry. If there is even a 1% chance that my son could have an anaphylactic reaction, you better believe I will get those EpiPens yesterday! At least I know that I have that allergist on speed dial and he will call in less than 5 minutes and let me know what to do. If I had any doubt of his integrity and expertise at all, I’d be taking my kids elsewhere.
Anyway, I guess part of the reason I say all this is because there seems to be a couple schools of thought: 1) EpiPen any time there’s been a reaction (hives, rash, anaphylaxis) no matter if it is an autoimmune reaction or an immune reaction. 2) No EpiPen unless there’s been anaphylaxis; treat with Benedryl or other allergy meds first, using the EpiPen as the very last resort (this seems to be the most common). 3) EpiPen if any immune reaction but not if it is an autoimmune one, because autoimmune reaction does not lead to anaphylaxis. Treatment for that is to get the autoimmune issues under control and treat reactions as they occur with steroids if other methods don’t work. I know that doctor’s and parent’s fear about heart damage if EpiPens are administered when there is not a life-threatening reaction going on. I get that. But I’m reading too much about death from a reaction that came after “no big deal” reactions. It terrifies me a bit. I’d honestly rather have the “just in case” EpiPens than to not have them and have to bury a child.
Again, this is going to be the point a huge discussion the next time I see my kids’ allergist. If there is ANY chance that an autoimmune reaction could cause an anaphylactic reaction or something like one that would require an EpiPen, we WILL be getting them. I will insist upon it.
Caroline, thank you for this post. I’m kind of at a loss for words. Because it just seems like the deaths should end. And instead they seem to be multiplying.
I agree Doctors really need to understand this more, and if they don’t, they should know to send anyone with a food allergy to an actual allergist who does. When my son was diagnosed, in 2006, we went to an allergist and honestly learned nothing from him. We did come home with an epi-pen but basically learned protocol on how to live, how to eat out, how to buy foods and read labels and call companies, from other moms, bloggers and if not for social media, I would know nothing. I cringe when I think about how naive I was as a new food allergy parent, and how I didn’t know not to buy “produced in a facility with….” products. Anyway, early this year we finally went to a new allergist and couldn’t believe all the great resources he gave us–finally–6 years later! And my current doctor keeps asking me when my son will grow out of his allergy. Why does he not know the chances are slim? He’s a doctor!
Anyway, I shudder to think how my 10 year old is going to be when he’s more independent in a few years. And I am so counting on some of these smart scientists to help us end this problem with something that helps at least alleviate the reaction. I would hate to think our kids will have to deal with this for their lifetime…
I am grateful you posted about laying down–I didn’t know that one fact. We haven’t had a reaction since my son was 3 and thankfully it wasn’t terrible, but now I’ll add one more thing to the list of things-to-do and teach to others…
Hi Robin,
I really did not understand the laying down part until an ER nurse, food allergy mom and allergic lady herself explained it. There is still so much that changes as we go. I think this is our biggest challenge, okay one of our biggest challenges is that we are in the beginning stages of understanding this disease. So as soon as we hit our stride, we find out we need to change it. I guess this is good a thing in the long run since we are making progress. These tragic deaths are just so hard to understand and accept.
Thank you all for sharing your love and prayers for Chandler Swink and Jamie Mendoza. Chandler is my Grandson, the son of my son Bill. When we recover from this tragic loss and grieving we hope to join your allergy community and find answers that we all need, perhaps pass laws, whatever we need to do to protect these children. Senator Marty Knowlenberg is our family friend and was at Chan’s funeral. The news of Chan’s death has gone global, and viral on facebook. He has touched many, and raised much needed awareness of the deadly allergies. Chan’s death has resulted in many miracles already and I am positive will result in many more. He did not leave us without changing many things and will help us all from the other side. He has brought many together with love, he is changing the hospital entrance and direction to emergency, he has raised awareness of allergies, perhaps saving many lives this Christmas season, and motivated many hundreds of people for change. Chandler was by no means ordinary, he was loving, he was funny, he was smart and an athlete, he was our everything. He was deeply loved by everyone who knew him. We will together work for change, we need answers, why are allergies on increase, why are many so deadly, how do we protect those who have them.
Chan was alive when he first drove himself to the hospital, he had injected the EpiPen, the cartridge was in his car, then he walked up to the hospital main entrance, it was locked, he walked to a second door, it was locked, with no attendant or guard in the front of the hospital, the main entrance was lite up like the entrance to a hotel, however it was locked up tight. The emergency entrance was in the back of hospital, very poorly marked. Chandler was found on the ground by the front doors, by security cameras with no heartbeat and not breathing, no pulse. With CPR, they revived him and put him on life support and in an induced coma and cold state, his body remained alive for one week. After the week, they said he was basically brain dead and life support was terminated. Hundreds maybe even thousands were praying for Chan, 5 priests prayed over him , a faith healer laid hands and prayers over him. The doctors and we his family did everything we could to have him wake up. We prayed so hard for a miracle. The miracles we will receive by his death will be great, many will be saved by our” Chanman”. We hope many will join us and save many children by his story.
Judy, Bless you for sharing your wisdom and words. I will insert your comments into this post. You are a beautiful woman and your family is incredible and blessed by bravely sharing Chandler’s story. There is not a doubt in this world that is not saving lives. He is saving lives right now and making change. I can’t stop crying as I read and write this as I can feel your love for your family and for others. This is truly a miracle regarding how many lives Chandler and you are saving. Chandler has touched thousands and thousands and will save lives. We pray for your healing and please reach back out to our community and let us know how we can support you, honor Chandler’s memory and save lives together.
Judy, Thank you so much for the courage it must have taken for you to share those painful details. Chandler sounds like an exceptional young man, truly talented and clearly much loved. We all send our condolences to you and your family and please know that you and Chandler will be in our thoughts always. We will learn lessons, work harder and continue this fight in Chandler’s memory. Our love to you all.
Caroline you continue to amaze me and inspire me. I’m glad we heard from the Swink family so we know their wishes are. Be blessed my friend. To the families affected by loss my condolences on behalf of Flowers for Anaphylaxis. To those still on the journey I wish you well and happy/safe holidays.
Very sad. This is why we also need to have nut free schools especially for younger children so they will not be exposed to the allergens or at least the exposure will be minimized. I know those who argue against it say that it is not possible to make a school nut free. I agree that we cannot make a school 100% nut free but why not try. If we can make it 90% nut free and most parents and kids comply then that is a win for me. To allow allergens in class rooms and eating areas where there are young kids with food allergies is a dangerous thing and is like playing Russian roulette. My daughter as a toddler was given other kids food by accident and even drank out of another child’s sippy cup. Her risk of having anaphylaxis would be minimized if kids did not bring food with nuts. We also really need to ensure our friends and kids friends (when age appropriate) understand what to do when they have an allergic reaction. I even talked to my daughter’s first grade class about it in a kid friendly way. The six and seven year olds in her class know that if she is not feeling well to stay with her and try to get help.
I believe every Dr should give an epipen to every mother when a baby Is born, while still at the hospital. You never know in that first year what they might be allergic to, and by not having one on hand, there is a greater risk of not being able to get to a medical facility in time. If they should need to use it, then they can get a prescription for it for future uses. it’s better to have had it and not need it,then need it and be in a huge bind.my heart goes out to these 2 families for their loss. I pray that their stories can help bring awareness to other families.
Yes, I could see the value of having the epi along with education to new parents, our grandson’s life threatening reaction was to the 2 oz. bottle of dairy based baby formula when he was five months old.. Fortunately, he was taken to a nearby hospital immediately upon seeing his reaction and received treatment. Testing that day showed other major life threatening food allergies.
the love of my life for 5 years, Kc Ryan passed away after two heart attacks and 10 days in ICU on sunday. He left hundreds of people broken hearted at the age of 29. Artistic by nature, outgoing, and extremely loving; he had barely broken the surface of the man he would become in life. Maybe he would still be here today if we knew that there was peanut oil in the sauce we consumed at dinner on our date night. Please spread the word that peanut allergy is no joke.. its an under represented Killer of many with this allergy. We can’t change the world, but we can save lives. Share if you believe
Nikki,
I am very sorry for your loss and am sending you prayers, good thoughts and love. Rick, just sent me an email about Casey and I asked him if we can honor Casey here on this blog, but I wanted his blessing along with family members too. I’m just over the hill from you guys in Reno. Also, there is a group called Love Remembers Day on facebook and they are planning a special day to remember all of the beautiful people we have lost to food allergic reactions. I will put in you in contact with Aleasa Word so Casey can be honored. I know it is hard to share, but your courage to share will save lives. Sending you as much love as possible!
When you have guests post from the ER can they explain the process? I’ve heard medically induced comma. What are the reasons to do this & are there any reasons not to do this? I want to know in case we are ever faced. I don’t want to just trust what they are doing as I have recently found out a lot of ER’s use steroids before Epi.
in the case of my boyfriend Kc,
he had 2 heart attacks and was revived but unresponsive.
the steroid works as an anti inflammatory it is important that airflow and circulation both are not hindered
by allergic reaction and for Kc who also had asthma.
they put him in a medically induced coma, because they suspected brain damage right away since they could not wake him up.
His brain was swelling quickly due to lack of oxygen.
during the coma phase, they induce hypothermia using cold water blankets, bringing his core temp down to 32 degree Celsius. this is what we call ‘cookbook medicine’. they do this for 24 hrs as a last ditch effort to stop the brain from swelling to the point of tissue death. following that procedure, they begin to bring temp to normal, and remove sedation. if this worked, they will start to wake up early as two hours.. up to much later on. they did a ct scan on my kc after he had not woken up a few hour later and his ct scan was completely smooth. there are supposed to be many ridges and different shades of grey. this is when they told us he didnt make it. he will not wake up. i am not sure the success rates of this cook book medicine, but it is wise to trust the medical team. they know what they are doing and they do their best. I hope you find this helpful, always administer epi if you have it right away, a couple benadryl, call 911 immediately. im sure many people are different but ALWAYS be careful if you or someone you love has a food allergy!
Thank you.
Adding a comment since I forgot to select the 2 notification methods.
December 18th will mark one year that we lost our daughter, Abbie, to anaphylaxis. This has to stop. The unsolved problem is that there is an absence of early detection of anaphylaxis. The reaction has a potential to move so fast that it can be too late before your eyes can tell you what’s going on.
We were educated and prepared. We (including Abbie) were all vigilant about Abbie’s food allergies. We often had Abbie and her friends practice discharging old epi pens into grape fruits, much like a fire drill.
Our daughter was safe, at home with her parents, and her epi pens.
Abbie was 8 days of shy of her sixteenth birthday, getting ready to go into Boston to celebrate with her cousin and friends. Bags were packed and her birthday cake was in the car. She first complained of indigestion and then started to wheeze. My husband immediately responded with her nebulizer…asked her if her mouth was itchy or throat tight. She said no to both. Within 2 minutes her condition deteriorated. My husband was on the phone with 911 and she said, “daddy, my throat is tight…hurry.”
Abbie received two epi pens, and within minutes she was unconscious, not breathing, no pulse. After four days on life support she passed away.
Dr.s later told us that the tightening of the throat is the LAST symptom of fatal anaphylaxis. We had always been taught to look for that symptom early on and have an epi pen ready. We were always taught to look for the rash or hives. Countless of doctors over the years had told us to treat first with benadryl and save the epi pen as a last resort…So many mixed messages being given to parents.
Food allergy awareness IS so important, but Don’t be afraid to use your epi pens! Know where they are at all times!
Epi pens CAN work, but too often people don’t recognize anaphylaxis until it has progressed too far. That’s why we need some kind of early detection.
We established a fund, in Abbie’s name, to raise awareness and funds for this very cause;
http://Www.keepsmilin4abbie.org. Please check it out. Thank you.