Talking Allergies

We have never told our 7 year-old son that his food allergies are life-threatening. He has been asking about death and it occurred to us that someone at school could tell him that he could die from an allergic reaction. Our messaging has always been that food allergies can make him very sick (he remembers his last reaction) and that the epi-pen always makes it better and keeps him safe. I don't want him to learn about the 'life-threatening' part from someone else, but not sure how to break this news to him without scaring him. As he has been learning about death, he has had some bad dreams and worries that mummy and daddy and grandma and grandpa will die one day and he doesn't want us to go (the standard developmental stage). But, he hasn't yet thought about the fact that he or his sister could die - and definitely hasn't linked it to his allergies (and possibly a higher probability ).

Has anyone already had this talk with their child around the same age? What did you tell them? How did they react? Are there any resources you would recommend?

Thanks,
Fiona

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Son 11 yrs: Anaphylactic to eggs, milk, fish, shellfish, peanuts, tree nuts and allergic to soy, animals & environmental + Asthma.
Daughter 13 yrs: No allergies!
Me: Allergic to animals & environmental.

Why do we wear seat-belts? Same analogy could be made for the epi-pen. We fly in airplanes and drive cars even though others have died doing that.

It is a fine line with our children between scaring them too much and scaring them enough that they don't eat unsafe foods.

Online you will notice that many people use the "my child could die" quote regarding allergies and eventually your child will hear that from a classmate or a parent. I confess that I used it in my early allergy days but now I say "if she ate that she would need paramedics, an ambulance and hours at emergency".

It was years ago that I had to explain the allergies-death link to my daughter and I don't recall the words but it wasn't easy. Years later I found that she thought that the epi-pen would kill her if she used it when it wasn't actually needed. Since you are asking the questions you are sensitive to the situation and will do great.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

walooet, you have mentioned this before and I've rolled it around in my head for awhile now. When DD was first "diagnosed" I was so frightened of the epi-pen too. I am ashamed to say that I was one of those parents who told the school "take her to the hospital before you do anything"....mind you...that was a few years ago and I would hope that if a parent were to say that now, someone would step up and help them get educated. All I can say now about that is thank goodness I got over that.

I can't remember when we discussed the life-threatening part, just like I can't remember when I told them about all the other stuff we parents should be discussing....I just listen and talk and listen and talk...on and on....I guess it depends on when these issues (death, birth, inbetween & beyond ) come up in your family as well...

Fiona, I totally agree with walooet

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Myself - Seasonal, cats
dd-asthma (trigger - flu) anaphylactic to eggs, severe allergies to bugspray and penicilin,pulmicort
ds-Seasonal, cats and OAS
dh-allergy cats, bugspray and guava, outgrew egg allergy

I told dd when she asked. She was 3. I told her that there was a very slim chance but that she was far too important to take the risk.

We talked about all the things we can do to keep her safe. I'll try to find the thread and link it here.
viewtopic.php?f=15&t=301

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

I think if you are feeling like you should say something, then you probably should. You know he is probably thinking things. Best you tell him and not someone else. Kids sadly get half bits of information and tend to fill in the blanks in a way that can scare them. You know your child best so I am sure you will do a great job telling him what he needs to hear.
Remember other siblings with this subject in mind. I say that as I realized my children were afraid for my life! I don't feel that I had said anything to make them fear.... but they must hear things by me and others AND...
I did tell them that though I do have food item that I should not eat I am always carefully read all labels and that if I am ever unsure I just would never eat that item... Also see how good we are doing keeping our self safe. They see the daily label reading, menu questioning... We also have an epi pen so that gives us time to get an ambulance so we can be fine.
Here's hoping the words come to you easily.

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Me-Allergic to Peanut, Tree Nut, Coconut, Shellfish, ASA and Asthma
My Husband and Children No Allergies

Thanks Walooet, I will definitely use the car seatbelt analogy - it is something we can all identify with and is actually very similar to wearing his e-belt. It also works really well with Susan's quote "you are far too important to take the risk" - the kids know that they are also too important to drive around without seatbelts (thanks for the link to the previous thread - I knew I wasn't the first to cross this bridge).

Paige, thank you for the reminder to include my daughter in the conversation as well. It's funny, we just bought her the American Girl: Taking Care of You (body book for girls) and are of course anxious about explaining periods and PMS etc..., but in comparison to talking about life-threatening allergies, periods and PMS talks are a cake walk.

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Son 11 yrs: Anaphylactic to eggs, milk, fish, shellfish, peanuts, tree nuts and allergic to soy, animals & environmental + Asthma.
Daughter 13 yrs: No allergies!
Me: Allergic to animals & environmental.

Fiona as per "girl talk" one thing I noticed the girls never new or it never said in any book. How long, as in each time of the month does this last! Girls know they are going to get thier "P" they know it lasts years, but they don't always know how many "days". This surprised me when I realized my daughter did not know, but how would you know if you never heard it. I also found different than when I was a young they don't seem to talk to each other. That is until they know each other is in the same "boat".
Only big issue is the first time (after) they have swimming with school.
They all figure it out though.
Good luck with all your conversations.

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Me-Allergic to Peanut, Tree Nut, Coconut, Shellfish, ASA and Asthma
My Husband and Children No Allergies

My son is allergic to insects and has always been terrified of them. We felt telling him that some of them could kill him might not be a good idea.

He found out......at school.....during morning recess.....and then had to wait ALL DAY before being able to ask me if it was true.

Someone was teasing him (coming up behind him and buzzing in his ear). He told the teacher who spoke to the boys doing it right away. They were all pretty young, but she took it very seriously, using words like "bullying" and "zero tollerance". Then said, "Allergies are nothing to laugh about. He could DIE FROM AN INSECT STING".

I was glad the teacher took it seriously, but, what a horrible way for my little guy to fnd out.

So, my advice is....talk to your son about it before something like that happens to him. And, obviously, I have no advice on how to raise the subject.

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self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings

I have been thinking the same thing, DS is the same age as your son, and we have always gone with the 'very, very sick' route. Not sure when to tell him more..

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DSs 12, 12, 14 all PA

Well, we had the talk this morning and it seemed to go really well. We picked this morning because my son has a birthday party this afternoon and I would rather he have a fun event to think about before going to bed tonight. Both kids are also on fall break from school all of next week, so he will be home for the next 10 days in case any further questions come up.

We brought both kids - Tyson 7 and Jasmine 9 - into the living room to have the talk. I started out by asking what they understood about Ty's allergies. He explained that if he eats something he is allergic to he has to have his epi-pen and then go to the hospital. We asked if he knew what would happen if he didn't use his epi-pen and he said he could stop breathing and could die (he shrugged his shoulders like "that's it"). I asked Jaz if that was what she also understood and she said "yes".

So, they both already knew and didn't think it was that big a deal. We talked about the seat belt analogy and asked if we ever start driving the car without our seat belts on. They both said never and we asked if they knew why. They explained that we could drive to fast and fall over or get in an accident and get hurt or die. We told them that lots of people have died in car accidents, but that we always wear a seat belt now to help prevent getting hurt or dying in an accident. Just like you always were an eBelt with an epi-pen in it if you have food allergies to prevent dying from a bad reaction. They really liked that analogy.

So we talked more about how the epi-pen works and why it must always be worn. I asked them both if they knew who Sabrina Shannon was and neither did. So, we listened to her radio episode on CBC archives (http://www.cbc.ca/livingoutloud/episode/2011/09/). The show is great because she has so many funny moments and great interviews with her friends and mom. Of course at the end of the episode (in the update) it is explained that Sabrina unfortunately died two years later from an allergic reaction at her school. They looked a little perplexed and sad at that update and so I asked if we should get a little more information. They said yes. (Just as a side note, on Tuesday this week, we brought the kids onto the highway overpass near our house to see the procession and hearse carrying Master Cpl. Byron Greff down to the coroners office because they have been studying the song Highway of Heros at school for Remembrance Day - so the theme of death has been pretty common at home this week)

So we looked up the article about Sabrina on Allergic Living together (http://allergicliving.com/index.php/201 ... lergy-law/) which explains the circumstances of her reaction. We used it as teaching moment to explain why it is so important to not leave the epi-pen in our bags, cubby's or lockers, but to always wear it. The kids added a lot of details as well to explain how the cross-contamination must have happened. We talked a little bit about Sabrina's Law and how Ty, us and the school are all responsible to help keep him safe.

We asked if they had any questions and Ty wanted to know how the epi-pen works so quickly. So we looked up what epinephrine is and how it works in the body (what did people do before the Internet?? ). I think they both liked the fact that we have adrenaline naturally in our bodies and that it gives you the same feeling as when you are excited or scared (we compared it to the feeling of dropping into the half-pipe at the skate park because Ty knows that feeling as kind of scared but excited) - he started skateboarding this year. We also reminded them that the epinephrine cannot hurt him because he is young and healthy. Jasmine also reminded us that it can also be used for a very bad asthma attack. And wanted to know if you ever needed to be given two shots. We said that, yes, which is why there are always at least two at school and home.

My DH was in the process of cleaning out the expired meds this week (including a ton of old epi-pens) and so we asked the kids if they wanted to practice using the real epi-pens on a grapefruit. We have also not shown Ty the needle on the epi-pen before because we didn't want to scare him - we have only used the trainer. They immediately jumped up and said YES ! They loved it. They took a few turns each giving the grapefruit the epi-pens and twin-jects (we had a lot) and learned how to handle them safely. Did I say how much they loved it!?!

So then we were done. They each wanted a halloween candy and we let them know that they might think of more questions later, so to just come talk to us. They both basically said "cool...can I have my candy now!". So it wasn't that hard. They both already had some idea of what "life-threatening" meant (although weren't familiar with that term) and don't seem to be scared or too worried about it right now. Deep sigh of relief

We will follow up again mid-week to see if any there are any new questions or thoughts. Thanks for all your advice!!!!!

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Son 11 yrs: Anaphylactic to eggs, milk, fish, shellfish, peanuts, tree nuts and allergic to soy, animals & environmental + Asthma.
Daughter 13 yrs: No allergies!
Me: Allergic to animals & environmental.

Well done! Both to you and your kids!!

Your children are very wise and clearly supportive. Love how you described all of it for other parents who will need to have this conversation.

I believe that how we react makes a huge difference for our children! Our body language and tone of voice really matter --- when we keep our cool they often will as well.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

That reminds me a lot of how it went in our home too...and in this case knowledge is power! We have quite a few old epi's and since DD's world is growing so will still find them useful as a teaching tool.

for finding the words to put all this out there for future references to those families following us. From my experience (before the internet, my mom & I looked in medical encylopedia she had & and the word anaphylaxis wasn't even in it) I can't even begin to express my feelings of gratefullness knowing that there are people out there that have walked this road before. Being a parent is the toughest job in the world, and when it's scary it's nice to know that you're not alone.

Sabrina died when DD was in grade three. She has been a shining light of hope and inspiration in my life since we heard of her story a few years later. When I cook, my kitchen faces my fridge and on it I have things that mean the most to me.....family, friends and dreams....and a picture of angels drawn by Sabrina that reminds me to "do some chores" because as my mom would say "they aren't gonna do themselves".

to you Fiona...that was a chore well done. Even though our family is way past this stage, it's nice to have the back up.

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Myself - Seasonal, cats
dd-asthma (trigger - flu) anaphylactic to eggs, severe allergies to bugspray and penicilin,pulmicort
ds-Seasonal, cats and OAS
dh-allergy cats, bugspray and guava, outgrew egg allergy

Great job, Fiona!
I'm sure you were dreading that talk but it sounds like you hit the points and stopped before they stopped listening.
Yes, don't be surprised if they have more questions. It's something that they shouldn't be afraid to talk to you about.
You can tell them that my daughter says the needle is long but skinny so it doesn't hurt much. It actually brings a sense of relief after the sensation of doom that accompanies the anaphylaxis reaction.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

Excellent, Fiona! I am so happy your kids have a great mother to help them research, answer questions, and do some injector tests. Leaving the door open to further questions shows just how much you care and want the best for them. Your kids are lucky to have you! Well done!

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anaphylaxis to tree nuts, peanuts, potato, wheat, sorghum; asthmatic, dairy intolerant, vegan
other family members allergic to to dairy, egg, peanut, peach, sesame, environmentals

My daughter said the same thing about the relief - her body reacted so quickly that she thought her body was shutting down and that she was dying. She said the immunization needle hurt more than the epi-pen.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental