Talking Allergies

A couple of weeks ago, just after dinner, my son started coughing - what started as a small nagging cough, turned into more coughing with wheezing. Since my son's diagnosis I've tried my best to educate myself about anayphylaxis -- but I have to say that while my son has fully recovered - I'm not impressed with how I or my husband handled the situation and hope that others can learn something from our story.
I was confused -- could this be an anaphylactic reaction?? No -- we're at home - I prepared the food -- I've called manufacturers...no nuts..??? Instead of responding to him and his symptoms - my husband and I were trying to intellectualize what was happening... Is this asthma? Where would a full blown asthma attack come from out of nowhere? (duh - peanut maybe??) Does he have hives? I don't see any (later at hospital saw that he had scratched the back of his neck raw due to hives) -- wheezing getting worse -- do we give him his epi?? Yes, no, yes, no -- let's get to the hospital. In the car on the way to the hospital (should have called an ambulance) I finally administered his Twinject when breathing became increasingly laboured. To make matters worse, when I injected him, he belted my hand (he was obviously startled and hurt) and pushed the injector out of his leg. So with stress levels already high, I had the additional worry of not knowing whether or not he received enough epinephrine with the initial injection. He must have - because by the time we got to the ER (a couple of minutes later) I had already noticed an improvement in his breathing (doctor confirmed this for me later). I have to say that the hospital was fantastic -- doctors and nurses couldn't have been better - he received more epinephrine, benedryl, ventolin mask - kept us for 3-4 hours to watch him for biphasic reaction - they made a traumatic experience all the better because of how they cared for my son. He recovered beautifully -- although not too happy for all of the needles, he was back to his old self before we left the hospital.
I have to say that I've spent a lot of time thinking about what transpired that evening and how pathetically my husband and I reacted. I guess you just never know how you're going to respond in a situation until you have to. I was ticked off at our indecisiveness -- more concerned at putting my son through the trauma of needlessly giving him an injection, that we potentially jeapordized his life. It was learning all the way around. My main lesson was -- respond to symptoms -- don't try to figure out where / how / why, in the moment. After reviewing everything that we ate for dinner that evening, while all of it was considered "safe" (companies had been called and food eaten before), there were two items that came from newly purchased packages. I called the CFIA and an investigator came out ASAP to take a report and take samples (thanks to this forum, I knew that I could do this). Although they don't always test, they did in this case because of the potential risk to others -- but alas -- the investigator called back to tell us that the two items were clear of peanut. I had mixed feelings -- I wanted there to be peanut so that I could definitively know where his reaction came from but didn't want them to find peanut because I didn't want to live with the thought of not being able to trust, trusted manufacturers. He's eaten all of the items since without incident (but we still have a follow up appointment with his allergist to discuss the situation) so I can only think that it was due to some kind of residual contact while we were out. We were at the grocery store before coming home to make dinner (but only near the toy section with my husband while I shopped BUT he did come into contact with the shopping cart and the store had those candy dispensers at the exit of the store which did have Reese's pieces). We got home, after he washed his hands he played with my husband for an hour while I prepared dinner without any signs or symptoms -- and immediately after dinner, his symptoms started...
Perhaps he stepped in some Reese's pieces when leaving the store, got home, took off his shoes and before making it to the bathroom for his handwashing, put his hands in his mouth -- maybe he sucked on the cart when I wasn't looking?? I DON'T KNOW!! (the "what if's" really can really drive you batty) Please don't underestimate the possibility of your child reacting to residual amounts in public places -- for us the message was, even though we do our best to protect our son - a reaction is still possible because he doesn't live in a plastic bubble (doctors confirmed that they don't make any Ethan's size ). It's too easy to get comfortable when you child hasn't had a reaction in a lengthy period of time...
My anxiety level was really high at meal time for the first week after the incident -- it's getting much better. I'm having to work through my anxiety when we're out -- I don't want Ethan to become paranoid because I'm paranoid but I want him to be cautious -- it's such a fine line...

Oh my gosh! I have read your message twice and while reading I thought to myself that I would probably do the exact same thing. I think your reaction was totally normal espeically since you prepared the food so I most likely would have done the same and run down through the list of foods that I had prepared.

Thank you so much for writing and telling us about your experience. It is defintely something to think about. I'm so glad that Ethan is okay now.

Take care,

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7 year old daughter-Allergic to Peanuts/Nuts
6 year old son-No allergies
4 year old daughter-No allergies

Thank you so much for sharing your story. It is really thoughtful of you to share it with all of us, knowing some of us may benefit from your experience.
I understand the intention of your post is to remind people not to hesitate by trying to figure out what went wrong....just deal with the symptoms and worry about the "why" later. It is a very important lesson, and thank you so much for the reminder. I have often wondered if I might react the same way. So, hearing of your experience will help keep me focused, if the need arises.
It is always pretty easy to see the 'wrongs' we've done, but really, you did so much right for your son. After all, you DID give him the twinject. You didn't wait until you got to the hospital. You DID get him to the ER asap...you didn't wait around at home to see what would happen. You called CFIA. You have racked your brain trying to figure out how it happened, so it won't happen again. I think you have done far more right than wrong, in an extremely stressful situation. You were in the situation that all of us here, who are parents, fear the most, and you and your husband handled it. Your son is fine, he's good, and thank goodness you were there and knew what to do.
So happy to hear your son is healthy and well.
Take care,

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6-yr old son: anaphylactic to peanuts; asthma
1-yr old daughter: No known allergies

Ethan's mom thanks for your story. I want to let you know that we have a very similar story - don't be too hard on yourself. My daughter was the same age as yours and it happened in September also. She was eating food that we had prepared also. I was in denial that the reaction was serious because I thought it couldn't happen with safe food. I was looking for the source and not looking at the symptoms she was experiencing. It was a real learning experience. I too did not call an ambulance and took her to the hospital myself. On the way it really dawned on me - what if she passes out on the way and I was alone in the van with her. Once we got to the hospital they gave her epinephrine and she had immediate relief. I was so amazed at the power of the epinephrine. It really showed me the importance of using it and not to hesitate.

I learned a lot that night. I thought I was well informed too and it was a real wake up call. We didn't figure out the source of the reaction. She had been outside in the garden before the reaction and was breathing in lots of pollen and maybe her immune system was already primed to react to something. Her snack had been heated in the microwave and it is possible that the tray was not clean. We are still not sure. I didn't know about sending food for testing but I will remember that in the future.

Hang in there and don't beat yourself up - Catherine is right - you did many things right that night and your son is safe and healthy and you are helping even more of us by retelling your story.

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies

Ethansmom, thanks for sharing your story. I am SOOOO glad he is okay now.

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

Thanks guys -- your kind words really mean a lot. It's nice to be able to "talk" to others who understand how you feel. Outside of this forum - I don't know any others that are dealing with LTFA. It's easy to feel alone in this and lose some perspective - especially when a crisis happens...

Hi Ethansmom, Thank you so much for sharing your story. What a frightening experience for all of you, and thank goodness your son is okay now. I also think you did many things right faced with an emergency situation, so I commend you!

The last time our son had a severe allergic reaction (a year ago last September) was the first time I had administered the Epipen (he had a reaction in the grocery store from contact with the grocery cart), but there have been other times my husband and I hesitated about whether or not we should or should not give the Epipen. I was also upset with our hesitation and not knowing what to do. I mean, we KNOW what to do, but it's frightening to actually follow through with the plan. Even one of the ambulance attendents was back and forth whether he should or shouldn't give the Epipen! And this was after seeing our son covered in hives, swollen eyes, and vomit on the floor. So, if an ambulance attendent can hesitate, is it any wonder we parents hesitate? When I gave my son the Epipen last September, he also jerked away very quickly (I now know that to have a VERY firm grip on his legs, or have someone else help in holding his legs steady). I think I was able to hold the needle in for about 3 seconds, and I also wondered if it was long enough. But within 5 minutes, his symptoms had almost completely disappeared.

Your experience helps to teach all of us how to respond, so thank you for sharing it.
Your experience also demonstrates how unexpectedly a reaction can occur and how we must always be prepared.

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14 yr old daughter: no health issues
11 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses

Thanks so much for sharing this. I'm going to talk to my husband about it when he gets home from work today. We've been "on a roll" with things for our son (sometimes I even feel a little normal! haha), and I'm afraid we would be as caught off guard, confused, etc. as you were if anything were to happen right now.

Thank you for providing a wake-up call for me (us), and I'm very glad your son is okay.
Marla

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*Son, 5 years old: Asperger's, allergic to eggs, peanuts, and mustard seed (outgrew dairy and soy)
*Son, 23 months old
*Hubby: allergic to cats and trees (non-specified types)
*Self: allergic to penicillin

Thanks for sharing your story. That is really scary not to know what caused the reaction exactly.

I have to say that I also hesitate before administering the epi even though I know that I shouldn't. . . I think that part of it is I feel like if I take the epi and make that 9-1-1 call then it is a scary emergency situation. If I don't take the epi, I can stay calmer.

I agree with the previous posters--you really shouldn't be too hard on yourself. You did a lot of things right!

Thanks for sharing your story. That is really scary not to know what caused the reaction exactly. I hope that your son is alright now and not too shaken by the experience!

I have to say that I also hesitate before administering the epi even though I know that I shouldn't. . . I think that part of it is I feel like if I take the epi and make that 9-1-1 call then it is a scary emergency situation. If I don't take it, I can stay calmer.

I agree with the previous posters--you really shouldn't be too hard on yourself. You did a lot of things right!

Hi Ethansmom, hugs to you and your son.

Don't be so hard on yourself. You did everything right. After all, you are dealing with a 3 year old who can barely verbalize how he feels. It's not easy to try to get a diagnosis without a stethoscope and blood pressure cuff, etc. We are not doctors, we only do the best we can.

Your little guy is fine today and that's what matters.

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

Julie -- that's exactly how I feel. I actually had a terrible nightmare after the incident where I was having to hurt my son, in order to help him. I think I underestimated the impact the whole situation had on me.
Thanks again everyone -- with everyone's help I'm actually starting to lighten up on myself about it...

Thanks for sharing your story. We can all learn from it. Glad to hear your son is fine now.

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15-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome

Sorry I'm so late chiming in but i agree with everyone else - it's very helpful that you've shared, and you should definitely not beat yourself up, because you did do a lot of things right.

I did things similar to you about 4 years ago (the last major reaction) with my youngest, only I didn't even administer the EpiPen - we waited until we were at the hospital and frankly that was a REALLY STUPID thing for me to do. But I think I was a bit in denial and scared to give the EpiPen too. I really wasn't proud of how I handled things. I'm still not proud!! But I definitely learned from the experience and I would do things very differently if there should be a next time.

It's definitely a good thing to keep in mind how effective the epinephrine can be. A friend of mine, who had to give her youngest an EpiPen about a year ago, makes sure she tells people how just effective it is and how quickly it works, and how the most important thing is to focus on how much better the person reacting will feel once they get it. And SHE administered the EpiPen sooner than she maybe would have... because she knew MY story and realized that she shouldn't wait.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma