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PostPosted: Thu Nov 19, 2009 8:25 am 
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Joined: Tue Nov 17, 2009 11:01 am
Posts: 6
Hello,
I am new to these posts and was looking for some advice. My son is 4 years old and was diagnosed with a peanut allergy when he was almost 3. He ate some peanut butter at that time and developed a blister like bump on the right corner of his bottom lip. I gave him benadryl and brought him to ER and he was fine. Allergy testing (both skin test and blood test) later revealed he was allergic to peants (4+) and he was prescribed an epipen.

Since then we have always been super careful and (knock on wood) no incident. Until this past weekend.....

we were visiting at a friends house who has other children and my son was playing in the family room with some toys. He was not eating anything. He came to me and said "mom my lip feels swollen". I looked at him and his bottom lip had 2 blister like bumps on it. I rushed to get the epipen bag and took out the benadryl instead and gave him his dose. Then I began to wonder if I should give the epipen. I have been told it is best to give it at first symptom when you know he has been exposed. But he wasn't eating anything and I didn't really know if he had come in contact with any peanut protein on any toys, etc.

So I called the ER and they said to watch him. I couldn't relax so I ended up taking him to the hospital and they checked him out and he was fine. The bumps went away within 1hour to 1.5 hours and that was it.

But now I am second guessing myself. Should I have given the epipen? Would you have given it? And if not when do I know when to use the epipen? My mother is also posing these questions to me now because I always told her on first symptom of anything you should give it and now she is saying she don't know when to give it because I never. But I have no idea if he had any contact with the peanut protein. What are your thoughts? When would you give the epipen? Would you have given it in this instance?

Thank you so much. I appreciate your feedback on this.


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PostPosted: Thu Nov 19, 2009 10:08 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Hi there, I thought you might like to read a post I put in there a few weeks ago. Our son has had every reaction from swelling until his eyes were shut, blood shot eyes pouring with tears, asthma induced from a reaction, sneezing perfusely, vomiting, grabbing his tongue, chocking/ grunting sounds. How many times have I used the epipen, you must think all the time right.....nope....once. I will always use it when needed from now on. I am very very thankful that our son was able to recover fully without my using the epipen, I think our luck would have run out at some point and that makes me ill looking back. It is never safe to wait, I've learned that. Also read an article posted from the last Allergic Living called Use The Darn Needle I've copied it below as I tried to put the link here but it didn't work.
I'm glad your son is ok. My opinion would be, yes, use your epipen. Hugs to you.


Quote:
Ok, after a few reactions (gulp..3 to be exact) where I should have used the epipen but didn't I was all prepared for the time I did have to use it. He's had epinephrine before a few times but always at the DR. after vaccines so she gives it to him in the arm with a syringe. The good thing is as I've seen him have the epinephrine I know how instantly it works so that is comforting.
Last night at playgroup just after supper I noticed our son start to scratch. I don't think we would have touched food there but when I see the grubby hands show up to playgroups I can pretty much guess that someone had peanut butter for supper or from one of the kids who played earlier in the day and touched the toys.
I watched like a hawk, , he started out with a small amount of rash/hives. I gave him benedryl but after just a couple minutes my gut knew what I needed to do. The rash and hives were growing in front of my eyes. Did I use the epipen right then, nope (I know I know) . !! I took out my cell phone to call my husband, then all in an instant I put it back. I remembered at the OASG I attended how as the discussion moved from topic to topic how 'not having ' using the epipen came up. Other parents mentioned not using it also when they should have and how several people piped up that their first instinct was to call someone. A mom said that she learned if you need to calls someone you already know the answer. So during this mlilisecond of thought our son looked at me, his eyes popped out of his head as if asking for help. He was pulling at his tongue and gave this weird clearing his throat sound. Our daughter has practiced her epipen demonstration about 100x at home and literally I heard and saw her in my head step by step. The little guy cried but the reaction faded away instantly. It was a long night at CHEO but he was a trooper. The nurses were all so wonderful making sure to tell me I did the right thing and 'way to go' for using the epipen. I hope they know how important that is to hear!



----------------------------------------------------------------------------------
Learning The Hard Way:
How Not to Fear the Needle

By Kathy Lundquist

*See Also: A letter from Kevin

If I'd written this a year ago, my perspective might have been a little different than it is today. Our son Kevin is 11-years-old and severely allergic to dairy, eggs and peanuts. We used epinephrine on him only once in those 11 years, and were very proud of our track record, especially with his list of severe allergies. After all, how many times a day do we eat? Three meals, snacks, parties, holidays - OK we eat continually. Then we had two back-to-back accidents within three months that threw everything we thought we knew out of the window.

When I read accounts in the past of children who died because the EpiPen wasn't given immediately, I silently wondered how that could happen. Why would anyone hesitate? After all, it's easy to use, it barely hurts, it does no harm if used when not needed (caution is advised for certain heart conditions), it helps severe asthma attacks, it can save a life. Now I understand. Now, we have our own tales of near misses to share, causing people to look at us the same way.

Our son has asthma. Each time he was exposed to an allergen in the past, he had a sudden, severe asthma attack. Mind you, those exposures were mostly caused by his allergens being cooked in the same room, not by ingestion. The two times he got a sip of milk as an infant, he also threw up violently and immediately. Each of those reactions was turned around with antihistamines and albuterol.

When he was 7, a cheese slice touched his food. He didn't eat the cheese slice - it just touched his food. Sudden asthma attack. Albuterol and antihistamines barely made a dent this time. We rushed him to the doctor where he was given a shot of epinephrine and steroids. We had an EpiPen with us - we didn't use it because we were looking for more than asthma. Big mistake. We were lucky his symptoms turned around.

Flash forward five years, with no reactions in-between. In the back of our minds, we were silently wondering if he might be outgrowing his allergies. He outgrew several by age 5; maybe the allergy tests were wrong? That turned out to be wishful thinking. A few months ago, we gave our son a new product that was dairy/egg/peanut free, or so the ingredients indicated. He took a few bites, and then left the room. Being the paranoid, overprotective, cautious type, I followed him. He took a few sips of water, and complained that his throat was bothering him. So was his stomach. That was all, nothing more. No asthma, no noticeable swelling, no throwing up.

I had that nervous feeling that only a parent raising a child with food allergies can understand - it's sickening. I reread the label on the product about a dozen times - no allergens. But he was not behaving right. Where was his asthma? It had always been our early warning sign, but this time, his symptoms were different. So, being an educated person, I gave him the EpiPen anyway, right? Wrong. But we did take him to the ER.

At the hospital, they looked at me like I had a second head. The child didn't appear to be in much distress, no asthma, blood pressure was fine, a bit of throat stridor, and he was moaning and sighing and his voice was funny. I handed them a copy of his emergency allergy plan, and explained our history.

So they gave him epinephrine immediately, right? Wrong again. Although I asked them to several times. (Where was my parenting skill? Why didn't I just give him the shot I had in my purse?!) They took our son in the back where some doctors and nurses surrounded him and stared at him, pondering their next move.

Suddenly, our child's symptoms exploded. He threw up violently, filling five containers, getting it all over him and a few of those around him. His throat closed. They ran for the EpiPen, and injected him immediately. They put in IV's and started steroids, more epinephrine, and antihistamines. He was traumatized, but his symptoms improved and he fell asleep while we stayed there for hours, monitoring him.

We contacted the manufacturer later, to find out what might have been in the food that wasn't on the label. They happily told us their plant was peanut-free. Yes, but what about dairy or egg? "No, no, we're dairy-free too." Egg? "Oh, egg is everywhere. High probability there was egg cross contamination. Is that a problem?" Unfortunately, yes, since our son is severely allergic to eggs. It seems that many people, including some manufacturers, don't understand that other food allergies can be just as severe as peanut. That takes us to last (American) Thanksgiving. The extended family was gathered around eating dinner. My son took a few bites, got a funny look on his face, and said he wasn't hungry. That nervous feeling started to grip my stomach ... not again! We excused ourselves from the table, since he is now at that age where he is private, and doesn't want a fuss. He said his throat felt funny, but he only ate some corn and potatoes. I ran into the kitchen and rechecked all the labels. Nothing.

I looked at him and his upper lip was starting to swell. This time, I told him, we're going to use the EpiPen. He looked at me like all kids do when you tell them they're going to get a shot. Then, to my surprise, he asked me to hand it to him. He wanted to do it himself. He did it flawlessly, holding it in place for the slow 10 second count, with a big smile on his face. It didn't hurt, and he knew that what he had done was brave and mature.

We went to the hospital. This time, no drama, no IV's. They gave him steroid pills, which he was able to swallow, and monitored him for a few hours. That was it. Because we (he) acted quickly this time, he was spared more trauma and misery. We left after a few hours and rejoined our family. It turned out there were two batches of potatoes, one with milk, the other without.

The lesson in all of this? Take food allergies seriously and do all you can to prevent a reaction. Read labels and avoid cross-contamination. Even with all of this, accidents will still happen. When they do, act quickly, and use the EpiPen immediately. As our son recently proved, it's so simple to use, even a child can do it.

Kathy Lundquist lives near Buffalo, New York and is a member of the Food Allergy & Anaphylaxis Network's Speaker's Bureau. For more information, visit www.foodallergy.org or call 1-800-929-4040.

A Letter from Kevin

The following is a letter that Kathy's son, Kevin, wrote in response to a question from another child about his experience.

Hi Curtis, The EpiPen didn't really hurt. I felt better right away and I didn't throw up. I was a little afraid to take it, but I wanted to do it myself. I don't know why. If I get an allergic reaction again, I would not be afraid to use it. You should use it right away, because the longer you wait, the sicker you get. You should try practicing it with a play EpiPen. If you eat the wrong food, sometimes you can feel it in your throat. The last couple of times I had an allergic reaction, I always felt it in my throat. I can't describe it, I just know how it feels. I had a little bit of a hard time breathing both times, too. Sometimes if you have the EpiPen and you have an allergic reaction, you should not be afraid to use it - then go to the hospital and get some steroids. They taste bad if you don't swallow them fast, but they help you feel better too. Drink something you like to swallow them easier. You can leave your clothes on - the shot goes right through and you don't get embarrassed from taking them off. After you take the EpiPen, you should put a Band-aid on where you did the shot.

From Kevin

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Thu Nov 19, 2009 3:16 pm 
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Joined: Tue Nov 17, 2009 11:01 am
Posts: 6
Thanks so much for sharing your story, it really does help. And thankfully my son was okay and I cannot go back in time but I think I will react differently if/when the situation arises again.
I must ask you how did your son react to the epipen? Did it hurt him much and does he fear it now?
How did you handle giving it to him?

It is funny because I have used the trainer and always said I wouldn't be afraid to give it to him but I was terrified at the time. Terrified to give it to him and terrified not to give it. Living with allergies is something that when you think you have adjusted to comes right up to haunt you all over again! Since this past weekend it is all I can think about once again :(


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PostPosted: Thu Nov 19, 2009 3:56 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
As parents we all do the best we can. I look back in time too and try not to kick myself, I just have to focus instead on what I've learned and move taking what I've learned with me. Susan had suggested I show him the trainer, she also had a great suggestion regarding educating him on the foods he is allergic to using pictures etc. to start to teach him safe and unsafe foods. It never occured to me that he could go years and never know what a peanut etc. even looked like as we steer so clear of them. I have to say that he was wonderful with the epipen. I think he was in so much distress that instead of fighting me he actually relaxed. After about 15 seconds he wailed like crazy but that was from being scared regarding having difficulty breathing during the reaction than the needle.

Quote:
While playing tonight I brought out the trainer epi. but only for a minute. I held it and said this was our special medicine to make you all better. I gave it to him thinking he'd think it was a felt pen but instead he took it and instantly pushed it into his teddy's belly. He wasn't upset at all and seemed to be just taking it in. We didn't push things but let him hold it and I asked where mommy used the special medicine and he patted his leg and said 'ow'. We all cheered he was a big brave boy and the medicine made him all better. Then after jabbing his teddy one more time he handed it to me and said 'all gone' so I took it away.
We'll let things go for a week or so now. I just wanted him to see the epipen sooner than later in case he was thinking about it especially as he can't express verbally how he is feeling. Now he's seen it, he wasn't afraid of it so we'll let him have time now to unwind. I like the idea of using magazine pictures and to start teaching him what foods are safe and what aren't etc.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Thu Nov 19, 2009 4:36 pm 
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Joined: Fri Oct 02, 2009 8:06 pm
Posts: 217
Location: Terrebonne, Quebec
I was petrified the first time I used the epi-pen. The first reaction, I didn't have one, and my daughter lost consciousness as I got into the ER. The second time I really should have used the epi-pen but wass too afraid. After seeing the difference the epi-pen made within 2 minutes of giving it to my daughter (she was 10 months at the time), I wouldn't hesitate again. Reactions can get worse so quickly, it's hard to judge. I know any reaction that shows up around her mouth, I wouldn't hesitate for a second (she has lots of skin reactions, but mostly on her hands, belly or back.. from who knows what, probably dust or dog or something..)

_________________
Daughter 3.5 years) - Dairy, Eggs, Peanuts, Sesame, Beef; asthma and eczema
Daughter (2 years) - Peanuts Eczema
Son (7 months) - Contact allergy to something food undetermined


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PostPosted: Thu Nov 19, 2009 7:00 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
In the past, I has given Benedryl but now I would just give the Epipen. The first few times are so difficult because you really don't want it to be a severe reaction but you can't be sure how bad it will get. Don't beat yourself up-you had a positive outcome.

Next time, give the Epipen (or twinject). :thumbsup

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Fri Nov 20, 2009 11:17 am 
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Joined: Tue Oct 06, 2009 11:08 am
Posts: 78
Location: Halifax
I have asked that very same question to our allergist and his response was "When in doubt, give epinephrine." So if you are asking yourself whether you should or not, go for it. Epinephrine will not do harm in this case, especially if the reaction is anaphylaxis. Also, the allergist stressed to me that Benadryl or Reactine will NOT stop anaphylaxis. I have seen this happen to my daughter. When she was in daycare we would give her Reactine before she went in. One dreadful morning, only one hour after taking her Reactine, she was exposed to milk and went into full blown anaphylaxis. Obviously, the Reactine did nothing but suppress a few hives but the other symptoms just kept manifesting. Each child is different, depending on the allergy and their reaction and where the mast cells are located.

Anyway, I designed a simple flowchart for other parents in our support group, which you can view here:
http://www.halifaxaag.com/uploads/9/5/0/2/950214/what_to_do_when_child_has_a_reaction_chart.pdf.

I use it with her babysitter and daycare, and plan to use it for school too.

I hope this helps.

Noha

_________________
Daughter: ana to milk, eggs, peanuts, allergy to pet dander, asthma, eczema
Husband: ana to aspartame, shellfish, allergy to pet dander, eczema
Myself: asthma
http://www.allergymom.ca


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PostPosted: Fri Nov 20, 2009 11:44 am 
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Joined: Tue Nov 17, 2009 11:01 am
Posts: 6
Thanks so much everyone for all your comments. I haven't used this forum before but I certainly see the value of being able to talk with other people who are going through the same challenges as I am. I will certainly be a regular visitor from now on.

Noha, that flow chart is great....I really like it. Thanks so much!


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PostPosted: Fri Nov 20, 2009 2:58 pm 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
Quote:
He came to me and said "mom my lip feels swollen". I looked at him and his bottom lip had 2 blister like bumps on it.


I might be "odd man out" on this one. I would not give epi for that. I would give benedryl, and I would keep my son within site of me.

Maybe part of the difference is, my son is allergic to some insects, and if I gave him epi every time he got bit by something, he'd be getting it daily some weeks.

I am definitely not afraid to use the epi-pen though. My son's first reaction was when he was about 15 months old. We were far from the city, no phone, so I sat in the back seat with him while dh drove us to the hospital. I had my adult strength epi out and was ready to use it if our son's condition warranted it. Fortunately, other then having one leg double the size of the other -- he was fine. I knew what would happen without epi if his reaction was anaphylactic. I was willing to take the risk of what would happen with a double dose because that was all I had.

_________________
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


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PostPosted: Mon Dec 07, 2009 10:37 pm 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1117
tanalpeanut wrote:
... Terrified to give it to him and terrified not to give it. ...



That was exactly how I felt too! Then after giving it there was immense relief. What I tell other people if I am not around is if in doubt call 911 because when I did that they had me talking with a paramedic within 30 seconds --- although it was after I had given the epi I think they would react just as fast if you were in doubt. I never want to bother 911 but there are people who call to ask them the time...

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


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PostPosted: Tue Dec 08, 2009 4:48 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
tanalpeanut wrote:

we were visiting at a friends house who has other children and my son was playing in the family room with some toys. He was not eating anything. He came to me and said "mom my lip feels swollen". I looked at him and his bottom lip had 2 blister like bumps on it. I rushed to get the epipen bag and took out the benadryl instead and gave him his dose. Then I began to wonder if I should give the epipen. I have been told it is best to give it at first symptom when you know he has been exposed. But he wasn't eating anything and I didn't really know if he had come in contact with any peanut protein on any toys, etc.


This is the part that makes you second guess yourself and I can understand why you might feel that you don't have to give it but...if you're considering using it, you probably should simply because you can't be sure how the reaction will progress, it's been prescribed and so the possibility for anaphylaxis is there and you won't do any harm.

You know your child, you know what a worry is and what is not a worry.

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Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Wed Dec 09, 2009 12:42 pm 
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Joined: Mon Sep 05, 2005 12:53 am
Posts: 373
Location: Alberta
I would not have given it either. He wasn't eating anything, and those blisters could have been from biting a toy the wrong way or something. I really like that flow chart - in this case it seems that since it was an outside symptom, then give the antihistamine and observe. We have had to do this many times with my son - he has had swollen lips many times, and we've only ever given the antihistamine for that. He has had several episodes of anaphylaxis as well, and trust me when I tell you that you will know when you have to give it...

Also, we just had a nut challenge at the allergist's office, and they "painted" his outer lip with some crushed walnut. His lips ballooned right away, and within a few minutes he was sneezing as well. However, they did not give Epi - the allergist was right there, and said this was of course an allergic reaction, but antihistamine would be fine in this case. They monitored him for another 1/2 hour then sent us home. So in our case, he was actually in contact with a KNOWN allergen, developed swelling and sneezing, but still didn't need an epi. HOWEVER, this was in an allergists office, so it might have been different if he were at school and this was happening.

I would wait until there are internal symptoms, like any sign of breathing difficulty or vomiting.


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