After Wednesday’s Blog post about Byrant University student Cameron Fitzpatrick’s tragic death from a cookie containing peanut there has been much conversation in our food allergy community regarding the fact that his family did not realize his food allergy could kill. We began exploring the question of how much each of us were told regarding the Good Morning America element of food allergies when our children were diagnosed. You’ll see part of this conversation if you read some of the comments from Wednesday’s Blog post, “Honor Cameron Fitzpatrick’s Death by Saving a Life”.
photo courtesy of NBC 10
Updated 3/15/03: “College Freshman with Peanut Allergy Dies After Eating a Cookie”reports in EpiPen®Auto-Injector, his EpiPen®Auto-Injector was in his suitcase and his mother had an expired EpiPen®Auto-Injector in her cabinet, check out the story for more details.
The allergist who first diagnosed my son right after his second birthday explained we would need to go to the hospital and showed us how to use the EpiPen®Auto-Injector if he had a reaction to his long list of allergens. At my son’s swim lesson two days later the nurse who performed the testing recognized me and pulled me aside to explain that my son could die from a cookie. I’ll never forget her words. The splashing, laughter and pool noise came to a screeching halt and all I heard was her voice. Die? Did she just use the “D” word? I am eternally grateful for her warnings. I quickly reorganized my plans for managing this disease.
Photo courtesy of Sloane Miller
The end result was us moving back to the Sloane Miller, a.k.a., Allergic Girl from Reno, NV since my husband’s business was still operating from Sloane Miller, a.k.a., Allergic Girl and it is where we found the allergist who we felt could guide us through this journey. Dr. Joshua Jacobs, explained ever so clearly during the Mylan Social Media Summit last January about finding the right Dr. Jacobs! She detailed how communication is everything and everyone has the right to a good relationship with their physician. I agree, my first allergist did a beautiful job of diagnosis but was challenged on the education side and not much of a communicator. I met anaphylaxis during a food allergy lecture and that is when we decided to move back to the Bay Area, for my son to be treated and our family to be guided by this allergist. He was clear, honest and determined to make sure we understood how to manage my son’s allergies and asthma. To this day, we drive 3.5 hours for appointments with Good Morning America as both of my children have grown attached to him and the practice.
Photo courtesy of Allergy and Asthma Medical Group of the Bay Area (p.s. this is the most serious picture we’ve ever seen of the good Doctor Jacobs, my kids giggled over it)
I can’t help but to believe that our challenge of allergy and Good Morning America education begins right at diagnosis. If parents are not receiving honest and clear information, then they are left to their own devices to hopefully find out the reality of what can occur-Good Morning America . Could it be that doctors are trying to walk that fine line of not scaring a parent to the point of panic or are they trying to be conscious of sharing information in front of a child who is not old enough to fully understand or digest the diagnosis? Is our medical community failing us or are they trying to protect us from placing our children in a bubble? Could parents only be hearing what they want to hear and not truly listening and accepting the diagnosis? My mind keeps going back to Cameron’s family, did they know he could die? Did he know it ? The video below is of Brian Hom who is incredibly brave to explain his painful story of losing his son BJ in hopes of saving the lives of others.
[youtube http://www.youtube.com/watch?v=o_kHX7XtqXk?list=UUE_125yu_QxOM0PXPOKj93w]
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!..
Oh, my story is one that I will never forget.
I was originally diagnosed with food allergies, and was to avoid all forms of soy, peanuts/tree nuts, fish and seafood/shellfish. Years later I would find out that I was either misdiagnosed or miraculously cured (I’ll explain that later), but I had the experience with having what I thought were 2 anaphylactic reactions (we think now they were asthma coupled with severe heartburn), and having possible issues with the steriods and being told by a doctor (before the diagnosis) that I had to go see an allergist to find out what I was allergic to because, if I couldn’t take steriods, I would definitely die if I ate an offending food. She said it so matter-of-fact, so without tact, it left me terrified until I did go to the allergist. The allergist I went to see later told me about my allergies after a test and then told me he DIDN’T want to prescribe me an EpiPen. I had to beg for it, telling him that I was clearly told these allergies could kill me, and he finally relented, but made me promise not to use it unless I absolutely had to, never explaining what that meant. Not only that, but he told me that as soon as I felt even a tickle in my throat, I had to take 2 Benedryl and a Zantac or it could go into anaphylaxis. I was constantly in fear of food, confused and paranoid.
Years later, as I mentioned before, I went to a different allergist who calmed me considerably. He found my asthma and re-did the tests and, when they were negative, insisted on a food challenge in office, and he charged me next to nothing for it all. When I hesitated on the food challenge, he explained to me it was the only way to know for sure, that they were well equipped, I was in good hands, and they were not leaving me alone in this. I did the food challenge, finding out I did NOT have food allergies, and walking away more knowledgable about the whole process than ever before, and peace of mind for the first time in years.
Fast forward to my dad finding out about his food allergies recently. He has hive reactions and IBS symptoms, and though the allergist prescribed an EpiPen, my dad refuses to fill it. He insists he doesn’t need it because he’s never had “that kind of reaction”. It infuriates me, honestly. I’m trying to get my mom to fill it if she can, anyway, but so far I don’t think that has happened. I cannot get him to understand, and it is my fear that one day I will get the dreaded call that he has died from refusing to get the EpiPen.
Anyway, I say all that to say this: Allergists and doctors need to find the right balance. People need to be aware that just because you’ve never been anaphylactic or just because you got to the hospital on time once doesn’t mean you’ll be so lucky the next time. No, you should not be a paranoid wreck (trust me, that’s just as bad and leads to panic attacks which aggrevate the situation), but they should be aware of when to use an EpiPen and when not to and how to recognize anaphylaxis. The second allergist I went to was brilliant about this, but the first set of doctors were a nightmare.
Honestly, I think the big reason they don’t tell you you or your loved one could die is because they don’t want you using the EpiPen in a non-emergency situation. My thinking is, then, they should show you how to recognize an emergency situation. Isn’t that what they are there for? To show you how to recognize anaphylaxis? I would think so. And, honestly, I’d rather know the risks I was facing than to be left wondering, though I’d want them explained tactfully and in a way that didn’t make me paranoid. There is a way to do that, and I don’t think most allergist/doctors know how to do that.
If the patient is afraid, you need to re-assure them that if they do this and this, they should be fine. However, in the case that this and this happens they should take the Benedryl or other allergy meds perscribed or if this and this happens, they should use the EpiPen and either call an abulance or go straight to the hospital because if they do not, then it could be fatal. This needs to be done in a calm, reassuring manner and the doctor/allergist should offer help with how to use the EpiPen, videos – whatever is needed to calm the patient. My first allergist rushed me out the door with a “good luck!” and a bunch of unanswered questions. My second one reassured, went the extra mile and left me feeling capable. There is a huge difference.
If the patient is not afraid and acting like “no biggie”, they need to be dealt with a little more firmly. They should still be told when to use the Benedryl/other allergy meds and when to use the EpiPen, but the doctor needs to look them in the eye and say something like, “Now, anaphylaxis can be fatal, and if you do NOT use the EpiPen AND get them to the hospital they WILL likely die, so I need to know that you will do what you need to do in case that situation arises.” A little fear is good in this case, I think, if you know what I mean. Again, they should be offered any info needed on how to recognize an emergency situation, etc.
Anyway, sorry to ramble, but I had a lot to say. 🙂 Thanks for writing this, Caroline. It’s a great article. If you have an article about how to recognize anaphylaxis or a link to one, please, let me know. I’d love to share it on Natural and Free. Thanks!
Julie, thanks for sharing and, no you did not ramble, you shared with us your situation and your thoughts. It is through open discussion that we can find solutions.
I will be speaking to Dr Jacobs this weekend. I asked him to read all the thoughts out here and respond to what his practice does and what does he suggest to us as patients!
Stay tuned. I will find you some good links regarding anaphylaxis to share on your site! Thanks for being such a great ambassador!
Caroline
Wonderful! I have already started a list of links on my page about Anaphylaxis. I tried to make a new page, but Blogger won’t let me (I have reached my max). Anyway, it’s kinda nice having the list on the home page, so I don’t mind. 🙂
Thanks again, Caroline!
Our oldest son Scott is just 2 years younger than Cameron. Unfortunately, we had 3 different allergic episodes when he was a under 2 that made us wonder if Scott had an issue with peanuts. As new parents, we didn’t know what a food allergy looked like. We mentioned it to the peds during one of his well baby check ups. They gave us an epi pen and told us that Scott should not eat peanuts because it “sounds” like he’s allergic. No mention that this was a very serious medical condition and he could die. No demonstration of the epi pen or what anaphylaxis was, no recommendation to see an allergist.,,no info…nada! I’m embarrassed to say I did not research food allergies on my own and it took a few more scary experiences before it opened my eyes. It wasn’t until Scott was in 5th grade that we saw a certified allergist in Kansas City. I always wonder if the age of being diagnosed has something to do with the lack of info from Dr.’s?
Dana, as a non-medical professional, how would we or why would figure out on our own that food allergies are life threatening. I love to research topics, so digging in is something I enjoy, but what about the families who don’t have access to computers or libraries, or simply don’t have the time.
I keep thinking some of our answers are with our medical community. I will ask Dr. Jacobs to maybe make comment on this topic. I’m quite disturbed by it.
I’m glad you finally got your full fledged diagnosis, even if it was late! I am a firm believer in specialists since they, well they specialize in these topics.
Great post, as always.
The first physician to say “anaphylaxis” to me, was the pediatrician, but as I said, before, it was over the phone and I really felt like it was an afterthought, like “oh by the way, maybe you should have these EpiPens because your daughter’s at risk for anaphyalxis”. They were focused on her peanut allergy, due to her test results, but if they had looked at the combination of her history and test results, her milk allergy should have been the primary focus. Aside from saying “risk of anaphylaxis”, they said nothing about how to manage our lives around it. Given that they told us to take the foods that she tested positive to out of her diet and slowly add back in the “lower” allergens back in, they did not convey a sense that we were dealing with serious business.
I agree that it can be tricky to convey this information to caregivers with their kids in the room with them, but some system needs to worked out to comprehensively and compassionately convey the realities of a food allergy and anaphylaxis-risk diagnosis.
I’ve been “called into” the doctor’s office before myself, so I think you are right about finding a compassionate way to call the parent in for an adult only chat. Dr. Jacobs will be calling this weekend to discuss this!
After reading all these posts, I couldn’t help myself but to ask him to call me so we can discuss how his practice is handling this and what can we do to reach out to the medical community.
Julie – I’m sure Caroline will provide excellent resources, but maybe you can also get your father to read this post: http://www.amazingandatopic.com/2013/03/guest-interview-adult-onset-food-allergy.html
I have links at the bottom of the post, about the signs of anaphylaxis and other information, as well.
Thanks, Selena! I will check it out and I think I will make a page for info such as this for my readers (giving credit, of course). I will let my dad know, but he’s kinda stubborn. My best bet may be to get my mom to read it. We’ll see! 🙂 Thanks again!
Absolutely! We need to share our information far and wide, to reach as many people as we can.
Selena, Thanks for the link…that is perfect! Julie, Selena is simply fabulous and I hope your dad reads her post!
Me, too!
I don’t remember when I was first given an epi-pen. I remember having an anaphylactic reaction to a bite of banana. I don’t think at the time anyone suggested that I should have an epi-pen. It was after my mold exposure that everything went haywire and I was given an epi-pen and told how to use it. I used it for food reactions (my daughter once had to give it to me after eating oatmeal) and I used it for reactions to medications as my list of allergic reactions to them grew and grew. I don’t think I ever heard the words, “you could die” from anyone at that time.
Kathryn, Thanks for sharing!!!
It is very interesting see how many of us didn’t full understand right away. I’m going to call my allergist and ask if he knows of any studies on this subject. It’s really quite scary. My heart skipped when you said you weren’t given an EpiPen after the banana!
This is such an important conversation to have. Thanks for sparking it. I’ve been noodling a bit on the issue of communication between allergists and patients, and in all honesty, I think there are so many areas where communication can break down whether it is the allergist assuming the patient already knows more than they do (i.e. everyone knows death can happen from a reaction, right?) or patients just not hearing the information as just two examples. Let’s face it – allergists are swamped. What about physician-guided support groups? I have no idea how feasible this is, but a follow-up with multiple different families, where an honest discussion can occur seems like a great idea. Everyone can learn from each other’s questions and the doctor would have time to explain to an entire group without worrying about the line out his/her door. I just remember feeling so overwhelmed with the initial diagnosis that I’m not sure how much of the epi-pen instructions actually sunk in at that first appt. But this is what we were left with, and then we figured the rest out from web resources like FARE and KFA. This is great for the parents who realize the allergies are life threatening, but what about the parents who did not hear this, don’t realize the threat, and therefore, don’t follow up? I think a physician-guided support group would begin to ameliorate so many areas where the communication could break down at the initial allergy appointment.
Julie, again, Selena is a great resource!
Caroline
Yes, she is!
Thank you, both! (((HUGS)))
Jessica,
I co-lead a parent support group here in Reno and you bring up an important point for group leaders to ponder: Should we include in our communication with new members a quick question about the severity of anaphylaxis and what the families know. We can’t dispense medical information but we do a great job of pointing them right back at this physician with solid questions in their hand.
Also, Kids with Food Allergies (KFA) is the largest and most wonderful (in my mind) online food allergy support group in the nation. http://community.kidswithfoodallergies.org/
FARE also has wonderful online resources, but KFA is an actual support group and may be appealing to the individual. Actually, when I met Dr. Jacobs, he explained that I will learn the most from the group of women in the room surrounding me. He was right. They really did teach me how to live with disease while Dr. Jacobs diagnosed, etc.
Thanks for sharing Jessica, we all appreciate your thoughts.
I have to tell you that at my daughters’ first sign of egg allergy at one year, I was only told about benedryl. I don’t remember any conversation about anaphylaxsis, But by 18 months after a moderately severe (though not anaphylactci) reaction to peanut accidentally, I was told point blank by our pediatric allergist that alhough she made it through this time with Benedryl only, next time she may not be so lucky. He said the 2nd or 3rd reactions can be fatal. I was also told the highest mortality rate is for teenagers and early 20-somethings. Epi-pen was now prescribed and I researched the heck of the term “anaphylaxsis”. My daughter is now 6, allergic to egg, fish, peanuts and tree nuts,and wears 2 epi’s at all times. But it honestly took my own intensive research and joing our local anaphylaxsis group where it became very clear to me that I was never given the very vital information about how and when to use the Epi-pen…and that any hestitation could be fatal. It took me being very pro-active to understand . Now, everyone around her is trained to administer. I’m training her to survive well past her teens. I feel this information should be give up front at the first time of a sign of food allergy.
Liisa, Thank you for sharing. I agree too, I think this data needs to be upfront, even if doctors need to ask parents to step into the hall or to request a private meeting or phone call. We all need to to fully understand what is going on and Allergic Girl, Sloane Miller is a huge educator of working and communicating. In her discussion with us she even mentioned attending a patient’s doctor visit.
Carrying two EpiPens is sooo important. I didn’t realize until not long ago that my son’s Epi Pen broke while he was using it. Thankfully, a second Epi Pen was carried and all ended well. Your daughter is very lucky to have such a good mom modeling her proactive behavior. Good job Mom!
Thanks again for sharing!
Good question. I don’t remember the exact moment anyone told me my daughter could die but at the same time I’ve always known it is a possibility since she was diagnosed. That period of life is foggy for me so it’s possible someone told me when they gave me the epi prescription. I remember crying for weeks because I knew how life changing and scary it would be.
A year later, one of my biggest challenges is educating friends and family that her allergies are serious and that she could die. I believe it– just not sure that they are on board yet.
Looking back, I wish someone at my allergist’s office had called me a few weeks after the shock wore off to go over details, talk about the situation, remind me about the chance of death, etc. Perhaps the food allergy community needs patient advocates who can follow up with newly diagnosed families. Yes it’s my responsibility to reach out to the Dr if I had questions, but I was a new mom, breastfeeding, sleep deprived and overwhelmed. It would have been great if even a nurse had proactively reached out to check in.
Amy, that is a GREAT suggestion. I am going to share it with my allergist.
Think of it, you receive very heavy news and how you live will effect the outcome, so it makes perfect sense to schedule a follow up visit in lieu of let’s wait for the next problem to hit!
I’m also glad you hear you cried it out. The best advice I ever received was from a friend who said, “you need to grieve your old life”. You need let go, make changes and then ride the new waves of life and begin to enjoy your family. She was soooooo right.
Oh how I don’t miss those sleep deprived days. So glad those are behind me.
Thanks for sharing Amy!
wow! Just like you I was never told my any Dr’s that my child could die. I was pulled aside while in the ER by a nurse who told me point blank “Did you ever hear about the girl who died when she kissed her boyfriend after he ate peanut butter? Well that is what can happen to your daughter she can die from this very quickly!” She told me that and then walked off and I never saw her again. I am so glad that she did because no Dr has ever had the guts or integrity to tell me the hard truth.
Andria, oh goodness! You had the same situation with the nurse grabbing you and giving you the dose of life saving reality. I’m forever grateful for that unknown nurse. I wish I had picked up her name, but I was still in my personal state of shock at the time.
I appreciate your sharing, especially since we had the same experience, there is an odd comfort in that!
My child was diagnosed with milk allergy at two months of age. We were not prescribed epinephrine nor was the word anaphylaxis used. Almost four years later after only mild reactions my child had what I now know to be anaphylaxis from cross contamination. At that point, I had to ask for a prescription from our pediatrician and a referral to an allergist.We have also been told by ER physicians that a second epi could not be given to a child. It is scary to think that as a parent, you posess more knowledge than an ER doctor.
Kim, This is one complaint my children’s allergist had or maybe still has (I haven’t asked him this in a while) that he worries about ER docs and pediatricians who do not understand anaphylaxis deep enough. In Las Vegas last year a school died in the ER waiting room from anaphylaxis. It was a horrible tragedy. The food allergy community down there (I live in Reno) was shook up and they responded via a grant through FAAN, now FARE from their annual Food allergy walk. The walk provided food allergy education for hospitals.
Thanks Kim for sharing your story.
Hi Caroline, This story is so tragic and upsetting. It’s been on my mind all week. Thanks for asking this question. I don’t ever recall our pediatrician or allergist openly mentioning death. This may be because our oldest son was also in the room for every appointment. For myself, while I was in denial for a long time, the moment our doctor started talking about an EpiPen and the symptoms that would trigger its use, I had to accept the severity of what we were dealing with. We carry 2 with us at all times, and hopefully will never have to use them.
Thanks for sharing your experience Heddi. Your point about denial is important too, are we hearing what we hope to hear? I’m really happy that you carry two at all times! Since you are living in Switzerland, do you have access to EpiPens or do you use a different style of auto-injector?
Yes, we still have EpiPens. Next time we see our allergist, I’ll find out if they’re offering any other options here yet. Apparently it isn’t typical to carry (or prescribe) 2 EpiPens here (?). I need to do some more research…
Interesting, here the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) both suggest carrying two in case there is a biphasic reaction (a second reaction coming shortly after the first). There have been some studies on this. I am having a senior moment right now, but I think I might have blogged about this. Let me find you the study! Also, accidents happens! I even carry a back up to my children carrying their own. My purse is always loaded and ready to go!
This story has been haunting me this week. I was in the ER twice from a reaction this week (I just posted what happened on my blog) and so many people did not really understand the reaction I was having. My allergist sent me by ambulance to the ER and by the time I got there we had already done three doses of epi and the ER doctor said he didn’t think I was having an allergic reaction. Uh, what?! He would not even listen to my mom when she tried telling him what my reactions are like. There needs to be more education even among medical professionals!
Oh Natalie! I can’t believe the ER doc didn’t believe it. Common sense tells me that you were responding to the epinephrine! I am soooooo sorry had a reaction this week. Were you in the ER for two different reactions or for the same one? Can you post a link to your blog post here too, so we can read it. We always learn from each other and maybe your story can teach the rest of us some different items to think about. Again, I’m sorry you had a reaction but it sounds like you did a great job in carrying epinephrine.
Here is the link to the reaction from this week: http://behindthereaction.com/2013/03/16/alive/
We think it was probably the same initial reaction. The second ER doctor (who was MUCH better than the first) said it was probably a biphasic reaction which resulted from not treating the initial reaction aggressively enough. I am always sent home with a prednisone, benadryl, and zantac prescription, but this time we were sent with nothing.
Thanks Natalie for the link. You shared a really important story. I’m sorry to hear your anaphylaxis is idiopathic, but it seems like you have a good head on your shoulders and are doing your best. There were some really good lessons in your blog post and I hope others read it and learn from your experience.
I have had the same experience in the ER, Natalie! At one point, I was triaged to the waiting room despite trouble breathing after heavy dosing of multiple antihistamines, a bronchodilator and steroids. (I foolishly did not use my EpiPen.) My uvula was so swollen that I had to lean forward in my chair so that it wouldn’t obstruct my airway. They left me there for hours as fought to keep my eyes open. When they called me back, they deposited me in a room and left me unattended yet again. All told, it was 4 hours before a physician laid eyes on me. By that point, my symptoms had abated and it was deemed to have been an allergic reaction, but not a bad one. When I saw my allergist a few days later, he said that I was lucky to be alive.
Kendra, oh this is sooooo wrong! I held my breath reading this. Dr. Jacob’s is calling me in 30 minutes and I want him to read every single comment here and so he can see up close what people are going through. He did a great job with my family, but what about his colleagues?
This is unacceptable! I am very, very happy to hear you are fine. Although, I’m sure you’ll use that Epi Pen next time. This is actually one of Dr. Jacob’s pet peeves, if you read my 4 missed anaphylaxis ER opportunities blog! No one using epinephrine.
Thank you for sharing this very important story
That is so scary! I would have freaked out if they made me wait.Thankfully we have never had to wait once getting to Urgent Care or the ER. They are typically good about taking me back once I said I am anaphylactic and especially if I have used my Epi-Pen. The hard part is getting treated from that point on. I told my mom that she couldn’t leave because if I started to react again I would be able to use my own Epi-Pen before they would even think about coming to help.
I was meeting with a family at conferences. Parents said child had an allergy to a fruit. Both are non native English speakers. I told them they should get an epi-pen. The school nurse rolled her eyes! Scary! I would maybe think you have a good case for some legal action against the ER doc!
I was told my 5 year old could die when she was diagnosed. The Doctor is one of the “top” allergy docs in MPLS, but a very mean man. My daughter and I would get so nervous before her appointments. Now, we have an equally skilled doctor who is also nice, understanding. I thought I was always so careful, but I accidentally bought the wrong thing at the grocery store, and we ended up in an ER at midnight even though she spit it right out. My daughter is 14, but it has really shaken her up. Luckily the ER doc took it seriously and kept her for 3 hrs to observe–this without any signs of reaction. Things have changed a lot in the last 10 years, but there is still SO much that the public (and medical community) do not take seriously. As long as I live, I will always have a current epi-pen for my daughter in my possession. My heart goes out to the family who lost their son!
my doctor told me that my allergy to certain Indian spices might be bad, and he gave me an EpiPen. But the truth is, I don’t really take it that seriously. I never had allergies growing up until I ate some Indian food and broke out in hives. The hives were annoying, but they weren’t really that bad and they went away quickly. I still don’t know what spice I was allergic to – but I don’t really see the problem with going out with friends for Indian. I mean, I haven’t actually done it yet – but as long as I have my EpiPen, nothing can happen right? my parents won’t let me good Indian food with them, and my friends discourage me, but I think they’re being overprotective.If I really had a bad allergy I’m sure it would’ve had it in the past and not all of a sudden breaking out in hives – I’m not even convinced the hives are from the food – they might be from something that I was exposed to in the environment. So I know some people have very serious food allergies, but I don’t think mine is that serious.
Sarah, please take your allergy seriously. 90% of the stories we read about food allergy deaths contain a line similar to “he/she never had a bad reaction before, we never thought they would die”. Past reactions are no indication of what a future reaction will be like and you cannot take chances. No food is worth your life. The boy in this story said “ah, to hell with it” and took a chance on an unsafe cookie and sadly, those were some of his last words. He also had epinephrine and figured that he’d be OK, but it wasn’t administered, etc. Also, it’s completely untrue that you would have had your allergy sooner in life, if it was serious. Scroll up and find my link on “adult onset food allergy” and you will see that a life-threatening allergy can develop at any time.
Also, my daughter is allergic to mustard, which is a spice, so don’t think that spices are not dangerous. Just because peanuts/tree nuts get a lot of press, does not mean that other food items cannot be equally dangerous. You also cannot believe that just because you have your epinephrine that you’re guaranteed to be just fine (though, thank goodness you actually carry it!!). Just days after Cameron’s death, this poor young girl died: http://www.citynews.ca/2013/03/15/family-grieving-after-girl-12-dies-from-allergic-reaction/. She DID get epinephrine (her sister’s, I’m guessing? the details are still unclear), but still died. It was that severe a reaction. She had never had a reaction in her entire life. It appears she didn’t have a diagnosed food allergy, but you KNOW about yours and should not take negligent risks.
I know, lecture, lecture, nag, nag, but we’re not making this up out of thin air and just don’t want you to end up in another tragic cautionary tale. Your friends and family would be devastated, especially knowing that it could have been prevented, if only they could have gotten through to you.
Selena, you are a rock star! We are lucky to have you in our community!
Caroline, you’re so sweet. WE are the ones lucky to have YOU! <3
Aw, Selena are you loved by many! Your website, amazingandatopic.com is very important in our world.
Hi Sarah, I’m really, really happy that you joined our conversation, please read Selena’s comments. She is right!! She knows about spices too! It is true, when we read about the horrible tragic stories, the same line is always heard, I didn’t know it could kill or “it was only hives”. Actually, yesterday I spoke to Dr. Jacobs and asked him how much too too much? I wanted to know if I was being over protective myself? He answered with a motto, “plan for the worst and hope for the best”. He said we should also plan on the absolutely worst thing to happen while hoping it will never happen.
So, carry two EpiPens always and go see a board certified allergist. Do you have an allergist? This link will help you find an allergist: http://aaaai.execinc.com/edibo/FindAnAllergist. Always, always follow your doctor’s orders. If you aren’t sure about it, then see a new doctor. Your parents and friends love you very much by their actions! You are a lucky girl to be surrounded by people who care so much about you.
Thank you Selena and Caroline. I guess you are right. I never really thought about it being that serious. I am seeing my general practitioner for a routine exam next monday, and I’m’ going to ask him for a referral to an allergist. You are right, I do have many friends and family who care about me and I shouldn’t take chances. I have a lot of question to ask the doctor. But thanks for your advice.
Thank you so much! I mean, I know you’re not doing it as a personal favor to me, of course, but you are making me so happy nonetheless! I would caution you that even some ALLERGISTS don’t even take spice allergies very seriously, though, so keep that in mind. Either way, I am glad you are going to follow up and that’s all we ask. You are doing a great service to those who love and care about you! (((HUGS)))
Sarah, this is great news! Selena is right, you are making us happy too. It sounds odd, but sometimes I feel that we are one large family food allergy attached by invisible strings. I’m glad Selena has some experience with spices and has good insight. Sarah, you know you are going to need to report back and let us know how the doctor’s appointment went!
Really interesting post and comments. My family’s experience of food allergies actually began with a close call. My son had an anaphylactic reaction to a peanut butter cookie when he was 20 months. Although the paramedic arrived within minutes with the adrenaline injection, he had to spend the next three days on life support. Thankfully, he recovered quickly and came out of hospital within a week. However, it showed us from day 1 that food allergies could be life threatening.
The hospital’s advice to us was that, yes, a severe allergic reaction can be fatal, but once you are diagnosed (and know what foods to avoid) and have been prescribed an EpiPen (and know how, and in what circumstances, to use it), then you are in a far safer position than pre-diagnosis. Like others have said, it is definitely possible for doctors to spell out the risk in a kind, tactful way, and essential that they do spell it out.
Hi Louise, I can’t even begin to imagine what you went through for three days as your son was on life support. What is impressive is that we can feel your confidence in managing this disease. Also, it is inspiring to hear your hospital did a great job of empowering you to move forward. It is very true, our kids are safer now that we have a diagnosis and tools for management. It is good to hear a story with a good outcome.
I think you also bring up some very important points for people to consider, the Epi Pen just doesn’t provide a quick 20 minute solution, your child was fighting for his life for three solid days with 4 more recovering in the hospital. Avoidance and working with your physicians make a difference. I appreciate you taking the time to share your story.