Talking Allergies

How long did it take to sink in?
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Author:  laurensmom [ Fri Feb 17, 2006 10:58 am ]
Post subject:  How long did it take to sink in?

When your child was diagnosed with an anaphylactic allergy, did the severity take awhile to sink in? (Those who didn't have an emergency situation.)

My daughter was diagnosed awhile ago with a peanut allergy and for some reason the gravity of the whole thing is just starting to hit me now. I think it was the timbit skin reaction a couple weeks ago that really hit home. I was pretty relaxed about the whole thing until now. Now, I'm losing sleep and am becoming paranoid about it all.

Author:  AnnaMarie [ Fri Feb 17, 2006 11:04 am ]
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I understood and accepted the severity immediately. When my son was bit on the ankle and I watched the reaction go up his leg - I KNEW. I was also fully aware that it could be fatal.

I do have an advantage though - I had an anaphylactic reaction myself before he was even born.

Author:  Julie [ Fri Feb 17, 2006 11:22 am ]
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Laurensmom, For our family, it took awhile for the severity of our son's condition to set in. I think it kept hitting us in waves, until finally it was a tidal wave. It was probably a bit of denial, and not really knowing to what extent we were going to have to adjust our lifestyle and eating habits. When our son was first diagnosed, we were with a different allergist who did not spend the time to educate us about how we were going to manage to completely avoid peanuts, tree nuts, egg, fish, sesame seeds, sunflower seeds, beans, etc. (it seems so obvious to me now, but not in the beginning as we had never dealt with this before). We weren't even shown how to use the Epipen! We are now with an amazing allergist who has provided our family with good direction. In the first year of dianogis, and before we were with the new allergist, our son had several major reactions requiring emergency treatment (ER and ambulance), and I think this was the wake up call we needed to understand that this was very serious! We are now extra-vigilant, and we now understand what we need to do. I've heard from others that until you see a "real" reaction, you think you can be more relaxed than you should be. Then when you see a real reaction, it hits you like a ton of bricks.

Author:  ethansmom [ Fri Feb 17, 2006 12:14 pm ]
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At first, because my husband and I were completely ignorant about food allergies, we took it in stride. Thought, "oh well, we'll just keep him away from peanuts...". After we saw his allergiest, had his peanut allergy confirmed and began to educate ourselves on food allergy and anaphylaxis - I became very upset and wondered how I was going to be able to keep my baby safe. I felt very overwhelmed and "out of control". The "what if's" plagued me. I was concerned about the other people in his life that might not understand the seriousness of the situation....did people really understand?? I wondered how I would educate others and would they feel I was "overreacting". It took a while for me to deal with the fact that this was something that he could die from and in ways I feel that I am still digesting this -- it's not something that we as parents want to spend time contemplating. For me, it was time showing me that I could deal with this and also recognizing that there aren't certainties in life for anyone. Time showed me that I could "manage" his peanut allergy by educating myself and others and doing my best to advocate for my son. I'm constantly learning and changing how I deal with situations...but it doesn't overwhelm me like it used to. :D

Author:  Julie [ Fri Feb 17, 2006 1:19 pm ]
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Further to my previous post... I can't say enough good things about Allergic Living and the accompanying chat forum. The combination of the magazine and the chat has helped out our family tremendously. I feel much more grounded now, and feel we are much better prepared to deal with our son's condition.

Author:  saskmommyof3 [ Fri Feb 17, 2006 1:32 pm ]
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My husband already had food allergies when our children were diagnosed. I heard the stories of his continual anaphlaxis, and new I did not want my kids to have the constant near death experiences that their father had growing up. It was still hard to adjust, and making the decision to rid the house of all allergens, and may contains definitely saved me a lot of stress and paranoia.

I have come to the realization that it is a hard concept for the general public to grasp...that even milk too small to see can potentially kill my daughter. I have a hard time leaving my children with anyone, I just don't think that others really get it. I also am not comfortable having others cook for my kids. To me, if I have a gut feeling that something is at all risky, or unknown (such as cooking days at school, or cakes at bday parties), I pass.

I have become more "cautious" over the years, and feel much less stress with the elimination of potentially risky food being fed to my daughters.

Author:  ethansmom [ Fri Feb 17, 2006 3:14 pm ]
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Julie wrote:
Further to my previous post... I can't say enough good things about Allergic Living and the accompanying chat forum. The combination of the magazine and the chat has helped out our family tremendously. I feel much more grounded now, and feel we are much better prepared to deal with our son's condition.

I agree Julie -- I think a huge part of my being able to come to terms with the situation was being able to connect with others -- it helps so much to know that you're not alone. I think a big part of the fear is in the feeling of isolation and going it alone. I've said it a couple of times already in different threads on this forum - but it's true - this forum has been such a source of education and comfort for our family.

Author:  _Susan_ [ Fri Feb 17, 2006 10:45 pm ]
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I think we thought we had it under control at first. No egg, right; no milk, ok. It was a few months into it, that we realised that also meant not trusting anyone else to know what was hidden in the most basic of foods. "No, she can't have that bread... no I understand the jam is 'safe' but it could have butter residue from a knife...please don't touch her after eating corn on the cob with butter...we prefer not to give her candies from the bulk bin..." :roll:
Then came the anger that one set of grandparents got it faster than the other. Understanding doesn't always equate with love, concern does however.
Then the social situations came. We came to know how much our friends loved us by the lengths they went to keep our daughter safe. Small children really try to look out for each other.
My husband and I have not always seen eye to eye on how to approach the food issues and how to keep her feeling good about herself.
Talking is so important. Talking to each other, talking to others who have been through this and have answers to your questions and questions you never thought of. Putting your thoughts into sentences forces you to think logically about them and it gives shape to your fears. Only then can you begin to deal with them.
Sorry for the rant, I hope I answered the original question.

Author:  sarahjo [ Sun Feb 19, 2006 9:49 am ]
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We have a daughter with allergies and she has a feeding tube, and even through all that I can't still believe that this is my daughter, and her strength is what holds me together, I have lost alot of sleep, but the thing that keeps me going is god, and the her face I can see every morning when I wake up, you have so much strength in you I know it, as far as the allergy thing, I take card with explaining to people what, and why she can't have certain foods, and I have been told that I overreact, but when comes to your child there is no overreacting, this is such a WONDERFUL website, and the people on it are a blessinig, May god be with you to calm your way through your journey,sarahjo

Author:  _Susan_ [ Sun Feb 19, 2006 11:15 am ]
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They think you're over reacting by keeping your child safe? Have they seen a Mamma Grizzly protect her young? It's basic instinct. Don't let anyone make you feel bad for trying to keep your child safe. They just don't understand.

Sometimes people say and do things because they feel put upon when they are asked not to offer certain foods. Foods represent a lot in most cultures and refusal of a food offering is somehow equated with refusal of love, friendship, hospitality etc. Once people are educated (it can take a long time), they are happy to help by offering safe food alternatives. It becomes another expression of love and hospitality.

Author:  Nicole [ Fri Mar 24, 2006 1:42 pm ]
Post subject:  Getting over the shock, in more ways than one.

My 14 year old daughter had an anaphylactic reaction to peanut butter for the 1st time over a month ago. Seeing her in the ER, all hooked up with an IV, a heart monitor, a blood pressure monitor and a nebulizer, and being administered 4 or 5 different drugs was scary enough. It took me a week to get over the shock. But thankfully, she grew up with an allergic friend so we were "trained" to an extent, but you never quite fully grasp it until it happens to your family. Nevertheless, being young, she took it better than me and we are lucky that she is smart and old enough to ask questions and be aware of her surroundings. The timing of Sabrina's Law's coming into effect is also great.

Thank God also for websites and forums such as this one, and other people we know in this situation because they have been our only ressources. If I had to rely on the medical world only...Her appointment with the allergist is not until May 17th! Meanwhile, you think we could have access to some sort of councelling, epipen training, etc. No, we had to research it all on our own. They offer councelling to parents of children with ADD and other conditions that are not life threatening, why not to our children?

And now on to the task of educating family and friends...That is going to prove to be a doozy, I'm sure! Until then I have to make myself my child's advocate and champion her cause.

Author:  Helen [ Fri Mar 24, 2006 9:03 pm ]
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I'm with you on the need for more support for people who are allergic. And doctors need to do a better job of conveying the life-saving info. on how and when to administer the epipen. On epipen training--I actually found it helpful to have someone else watch me do it (with an epi trainer). I've heard that as part of an attempt to spread awareness about allergies pharmacists at Shoppers are offering training on how to use the pen. (not sure for how long)

Author:  Nicole [ Sat Mar 25, 2006 12:47 pm ]
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Hi Lisa,

Yes, the pharmacist at Shopper's Drug Mart was wonderful. He did take the time to explain the epipen, even though it was a busy Saturday morning and also directed us to the epipen website ( which has a wonderful training video. He also called us a few days later to see how we were coping with all the meds. I keep going to that drugstore even though it's out of my way because I have always had great help there. Sometimes they are more helpful than the doctors!

Author:  Helen [ Tue Mar 28, 2006 1:16 pm ]
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that's really impressive! I do find it is important to talk to one's pharmacist about meds...they are the best ones to go to on how to take one's meds and on possible side effects. A lot of doctors should be doing more on this front in my opinion, but at least we can get the info. from another source.

Author:  Rachael [ Sat Oct 07, 2006 9:38 pm ]
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It sunk in immediatly for me and I was absolutely terrified. My husband took a little longer, his initial response to me saying that we had to throw out the peanut butter was, "We'll finish it first." He didn't really get it until my daughter reacted to just touching some chocolates that he had brought into the house. Now he takes it VERY seriously. Extended family was another thing. There is still a little bit of, "Do we really have to do that?" when I tell them that they have to put all their nut-related products way out of reach, not eat any nuts or nut-related products before we come over, and put the dog and cat away. I think that the mother-in-law is taking things a lot more seriously though since I stopped talking to her for a while after she made a really snarky comment about her granddaughter's allergies. She saw my daughter's allergies as a weakness in character.

It really can take a long time to get the family on your side. Just be persistant and tell them everything. They may think that you are over-reacting or being over-protective, but it has to sink in at some point. Like I said, I think grandma is starting to get it.

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