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 Post subject: "I don't want to die!"
PostPosted: Tue Jul 26, 2005 10:29 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Our daughter discovered her own mortality Saturday night @ 0900. She's only 3 3/4 years old. :shock: We were reading a book about a song she's heard several times.
I Know An Old Lady Who Swallowed A Fly.- I never put it together but of course! She ate something and it caused her to die. Duh, I can be so dense at times!
She became very interested in dying when her Grandfather died last January. Evidentally this was something that only happened to other people.
She asked me point blank (a few months ago) if she could die if she ate something she was allergic to. I told her the truth (her memory is too good to lie), that there is a chance that that could happen and because of that we need to be very careful ei. No Epipen = No Food. It was only just now that it really sank in.
We had a short talk that night and a longer tak the next morning.
It was a great comfort to her to know that I come here and talk to people who have dealt with the same thing that she has to deal with and have managed to remain relatively healthy. I also told her about a co-worker who is 55 years old, has 4 children and also has Asthma.
Her main goals in life are to grow up and be a Mommy. She might also be a butcher, she thought tonight that it might be a good profession. (She's so weird in a cute sort of way) :D


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 Post subject:
PostPosted: Wed Jul 27, 2005 2:30 pm 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
I remember that story!
It would be really hard to know what to do in this situation!


Last edited by Helen on Sat Oct 18, 2008 8:43 pm, edited 1 time in total.

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 Post subject:
PostPosted: Wed Jul 27, 2005 2:35 pm 
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Joined: Wed Mar 23, 2005 1:17 pm
Posts: 50
Location: Hamilton, Ontario
Susan, reading your post brought back a lot of memories. My son was diagnosed as peanut-allergic when he was 4. My husband and I, also, were very straightforward with him. I remember how terrible it felt to tell the little guy that this could be fatal. But we have to do this to keep them safe. He's 16 and never had a reaction since. He was tested again at 14 and still rates a 4 on a scale of 1-5 (very allergic). But I believe his "flaw" has made him a very compassionate person. He sees the good in people no matter what their differences.


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 Post subject:
PostPosted: Wed Jul 27, 2005 8:40 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Thanks for the replies. Lisa, I told her you said Hello, but she's too busy watching Care Bears! :roll:
Yakkie, I think knowing he has been reaction free for 12 years is a comfort to her.
She thinks the ".com" is so cool!


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 Post subject:
PostPosted: Fri Jul 29, 2005 12:21 pm 
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Joined: Tue Apr 12, 2005 9:50 am
Posts: 205
Location: Canada
Susan;
I feel for both you and your daughter. I feel that explaining it to her is much better then not telling her anything. You never know if she may think up things. I also remeber that song. Never wanted to swallow a bug....
When I was much younger my neighbor (she did lots with me as I did not have a Mother after age 9 ), she tried to explain lots of things to me. Some where sucessful and others well she tried...
It is good that you can tell her these things and she understands, as young child can, and that she totally trusts you. I have lived through many reactions and made it to my age........ So, please I say hi to her and to you also. The glass is always half full. :D
I loved the Care Bears when my boys were young. They are so cute.....

Hi to Lisa and yakkie also

Kelly


Last edited by Kelly on Fri Jul 29, 2005 5:22 pm, edited 1 time in total.

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 Post subject:
PostPosted: Fri Jul 29, 2005 1:13 pm 
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Joined: Tue Mar 22, 2005 1:25 pm
Posts: 323
I was only diagnosed with anaphylaxis at age 10, but I have a really good memory of that time when the doctor just sat me down and said that if I eat fish again, I will die :shock: . I got the message, but I think there could have been an easier way to tell me.

Say hi to your daughter (don't know if we'll meet again), she would probably like the Ottawa group meeting for kids this fall as it could deal with some of her questions (did you get the notice?).

Mylène


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 Post subject: Mortality
PostPosted: Wed Aug 03, 2005 12:09 am 
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Joined: Sat Jun 18, 2005 11:39 pm
Posts: 30
Location: Nova Scotia
Hi guys, I've just read what you've been discussing about telling your child of his or her potential mortality due to allergies. My (just-turned) three year old daughter is severely allergic to milk and eggs, all products containing them. She understands that she can't eat anything with milk or eggs in it because it "will make her sick". I've never told her that she could die, I guess because I don't really think she understands what it means to die yet (she hasn't yet experienced the loss of a family member or pet) and I guess the thought of telling her that, even if she did understand, makes me feel nauseous just thinking about it. For any of you who have gone through this with a young child, any suggestions on when/how it should be brought up? I guess I've just assumed I would wait til she brought it up (kind've like the ** talk! :wink: ), but maybe I shouldn't wait that long. Is it important for her to know that part of it yet (the mortality thing) when she's not old enough to be ordering her own food in restaurants or eating unsupervised anyway? One thing that came to mind when I was reading the posts was an incidence a few months ago of extreme insensitivity as far as I'm concerned. My daughter has a good friend, who I'll call Jane, whose babysitter is a friend of mine. Jane's almost a year older and is very precocious and outspoken. My daughter and "Jane" play together when I get together with my friend the babysitter. So even though my daughter and I know Jane well, we don't know her mother "Sue" that well as it is the babysitter who brings Jane to our house or the park or wherever. All of my daughter's friends have been taught by their parents or (in this case) their babysitter about my daughter's allergies. But I never really knew what they were told except that she can't eat milk and eggs. So one day we're at the local YMCA and Jane is there with her parents, and Jane's mother starts talking to me about how much Jane loves playing with my daughter and talks about her all the time, etc. Then she mentions that Jane has told her about my daughters allergies, and then she says, laughing, that Jane said to her "If (my daughter) ate anything with milk or eggs in it, she could get a really bad cold or she could die". Then she proceeded to laugh as if it was the cutest thing she had ever heard Jane say. I was so dumbfounded that anyone could say anything so insensitive, or at least in such an insensitive way, that I didn't take the opportunity to tell her that that was actually a possibility which I didn't find so humorous. I know she was just ignorant of the reality of food allergy and didn't intend to be so hurtful, because she is a very nice person despite this comment! But that was the first time I considered the possibility that she might hear it from her friends before she hears it from me if I don't soon explain it a little better. And kids can be so cruel that who knows what she'll be told. I don't want her to lose trust in me if she feels that I've kept this hidden, what else haven't I told her. Am I worrying about this too soon? What do you guys think?


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 Post subject:
PostPosted: Wed Aug 03, 2005 9:00 am 
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Joined: Wed Mar 23, 2005 9:47 am
Posts: 305
Location: Montreal, Canada
I remember the doctor told my parents in front of me when I was 4 that I could die. Beeinng the wuss that I am, knowing I could get sick would have prevented me from eating any product containing peanuts or nuts, but for some kids, beeing sick is not enough of a threat. They are too adventurous. I know I would tell them the truth asap, but that's just my 2 cents. Of course, if your kid is like me, just the thought of beeing sick should keep them away from any allergenic products.


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 Post subject:
PostPosted: Wed Aug 03, 2005 9:18 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
You could always just ask her what she knows. Let her know that you're willing to talk or just listen.
I think it's most important that they learn how to avoid the allergen and how to say "no" when adults offer her foods.
I only told dd that she would get really sick and have to go to the hospital. She's had enough experiences through her asthma to want to avoid the hospital. (not scared just knowing that it's boring)
She figured out the dying bit when I realised I forgot the fannypack containing her EpiPens and told her that she couldn't eat anything even foods we'd had before.
No EpiPen means no eating (or drinking except for water).


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 Post subject:
PostPosted: Wed Aug 03, 2005 4:57 pm 
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Joined: Wed Mar 23, 2005 1:17 pm
Posts: 50
Location: Hamilton, Ontario
I agree with Susan. Looking back, we first told my son that he could get "really sick and have to go to the hospital" when he was initially diagnosed. But he was already in junior kindergarten, so we told him that if he didn't go to the hospital because of a reaction, he could get so sick he could die. That was a bad day for me. He didn't express any fear at the time but the next time we were in the grocery store, we had to skip the aisle that had toiletries on one side and bulk nuts on the other. So, even though he had developed that fear, it heightened his awareness of his surroundings. I wasn't happy about that fear but I was resigned to the fact that he needed to have that caution to keep him safe.


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PostPosted: Mon Aug 08, 2005 11:03 pm 
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Joined: Fri Apr 15, 2005 2:53 pm
Posts: 119
Location: Ontario
I am a woman of 46 and I know what it is like to have a reaction and go into anaphalctic shock. Not a pretty picture. About as scary as it can get when it comes to ones own mortality. I did not develope my allergy until my mid 30's and it got progressively worse. To the point where I had to leave the school where I worked. I am an adult and I can speak and tell you what happens when a reaction occurs. Little ones, they cant, so what ever you do, be villagent and dont take any chances.. I know first hand what it is like to have a reaction and have my throat close up as if a tennis ball is stuck in it. For a child to describe that would be difficult, to say the least. The allergin is only food and we can do without the allergin causing foods. If it means saving the life of a youngster. I have my own child, who is now an adult, yet prior she was allowed to eat or bring anything into our home that contained any of my allergins. Same for my husband.. Its only food, find safe alternatives. You know that 'bright white lite, that you are apperantely to see when you are dying.?'... Well when I was laying in the Emergency Room Bed and the Doctors were pumping all the meds into me. There was a tunnel of nothing but darkness and fear. As the doctors worked on me, Im my mind every 30 seconds felt like 5 minutes, it just was not fast enough for my body. I felt that I was suffocating and I was also in ana. shock. Terrible thing to go thru. I made it thru and, again I am an older adult. Parents, do all you can but let your little ones enjoy there life the best they can. I only tell you this because I am older and knew what was happening to my body. I cant imagine the little ones, they cant tell 'Mommy or Daddy', what they are going thru. That hurts my heart. Deeply.


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