Scary Reaction

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My son is 7 and is allergic to peanuts, tree nuts, & strawberries. A few months ago, he ate a cookie that I believe was mislabeled. He took one small bite and put it down. I knew right away that there was a problem. He went straight to the couch to lie down, put his hands to his throat. I gave him some benadryl, (should have used the epipen). I waited a few minutes to see if the reaction would stop. It didn't and we were off to the ER. I think the Dr. there made a bad decision by not using the Epinephrine right away either. The reaction progressed. His face was very flushed, he was irritable, and finally he started to have trouble breathing. They had tried steroids but it didn't work. They were going do give epinephrine via a breathing treatment when another Dr. was called in to evaluate. He immediately administered epinephrine right into the vein. He improved immediately. Since that time, I am scared to death for him. I won't let anybody else make a decision about food for him. I am so afraid of what will happen if this occurs again. I know that I will administer the Epipen right away. I realize now how uneducated I was. I don't think the Drs. do a good job of educating us. We are on our own. Sometimes, I think I know more about this allergy than they do! This was not the first reaction. He first reacted at the age of 12 months (the very first time he tried peanutbutter). He was already allergic to dairy at that time. He has since outgrown the dairy allergy! I am glad to find this web site. It helps to have other parents who have been there.

On Aug 16, 1999

Patty,

I've had really bad experiences with doctors at hospitals(California). They have wanted to 'observe my reation' for 45mins while I requested a shot. Too many doctors in California are on a power trip.

The best thing to do is be prepared and arm your self with the epi-pens!

On Aug 18, 1999

Hi Patti I can imagine how frightened you must have been...I also have had a scary experience with my 8 year old daughter. We live in Costa Rica, and the 911 service is not so reliable, and when my daughter reacted to an improperly labled icecream, we started on our journey to the hospital, (25 min. away) We gave her benadryl right away, and waited untill we were about half way there to give her the needle. Her lips were very swollen and she was very mellow, and said her chest felt like a cramp...We waited much too long, but it was our first time we had to administer the epipen, and we were afraid. I think in the future we will give benadryl first, wait a couple minutes just to make sure it's a peanut reaction, and that its not just a less severe reaction to something else, but only a couple minutes wait this time.... then give the epipen. It's such a scary thing , and i'm sure you have been hearing from everyone including doctors on what to do next time. So have I, I don't know for sure what i'll do if theres a next time but I do know i'll give the epipen much, much sooner. Stay safe and hope there isn't a next time!

On Aug 18, 1999

Never hesitate to give the epi-pen - I have found this out the HARD way. This is why you need to have several epi pens so you aren't so worried about "wasting" one.

I once ate a bite of some stuffed grape leaves at a restaurant. I immediately knew I was in trouble. I went to the lobby and called 911, then went in the bathroom to inject epi. A rude female police officer walked in right as I was injecting it and started accusing me of doing drugs. She was responding to the 911 call! I explained and she made me go outside to wait for the ambulance. Over the next ONE HOUR the police and fire fighters (who had shown up but couldn't do anything) forced me to wait outside the restaurant for the ambulance (it took over an hour). I used three epi pens during that time. They would not let me leave in my own car to drive to the hospital, which was 10 minutes away.

When the ambulance arrived they would not leave before they started an IV. They couldn't start the IV because a) they were incompetent and b) I had a lot of epi in my system which shrinks your veins. After 20 minutes I convinced them to call and get instructions from the hospital. The hospital told them to give me an epi shot and a benedryl shot and bring me in. They didn't know the way to the hospital and it took them 30 mins to get there at 5 miles an hour. This was a terrible reaction and I had to have some serious steroids later to get rid of it.

The moral of this tale is a) have plenty of epi pens and don't be afraid to use them, b) calling 911 isn't always best - if the hospital is close, just drive there! The epi pens give you about 10 minutes each.

On Aug 18, 1999

Rebgaby, that's got to be the worst ambulance story I've ever heard. It's a wonder we survive the incompetence of our medical system at times, isn't it?

Noreen

On Aug 19, 1999

I am so sorry to hear of your frightening experience.

I hope that you are aware that there is no law requiring any American food company to state "may contain traces of peanut" on their pkg. Since your son's reaction was so severe it might be a good idea to telephone food companies and ask about chance of peanut contamination before using their products.

Please do not be shy to use your epi-pens!

Although giving an epi-pen is anxiety provoking for many people in a time of high stress, it is the single most useful thing that you could do to help your child.

In all of the case histories I have reviewed of deaths due to anaphylaxis, epinephrine was not administered right away. In each of these cases it is thought that immediate use of an epi-pen would have saved these lives.

To use an analogy I once heard from a medical professor...an anaphylactic reaction can be thought of as Niagara Falls. As the water is approaching (initial symptoms) it can be easily dammed and halted (administer epi-pen to halt/reverse reaction). As water progresses to the edge of and over the falls, (reaction increasing and encompassing more systems of the body) it is very difficult to stop/reverse the flow if not impossible (at this stage death often occurs).

Administration of an epi-pen when not needed will not be cause any harm to your child. Procrastination might cost you your child's life.

On Aug 19, 1999

Thank you all for your responses. I wish the Drs. would be so frank. They make me so mad! When I first discovered the allergy, the only thing the pediatrician said to me is "You know what he is allergic to, just keep him away from it". He did not even prescribe an epipen. It took me a year before he would give me a referral to an allergist. I told him I would not leave the office without one! They took me seriously and wouldn't let me out the door without an epipen. I was really in the dark, but no more!

On Aug 19, 1999

Hi Patty, Tim, and Rebgaby

I can sympathise with you all - thanks for sharing your experiences. Hope that your treatment improves in leaps and bounds from now on!

I too experienced the hospital "Observe for hours, inject one stage at a time, etc" drill when having a reaction. The "shock" part of anaphylactic shock is due to the extreme swelling and dilation of the blood vessels around the reaction site and in other places. You rapidly loose blood pressure, blood volume supplied to the brain is reduced, and shock is inevitable.

This causes drowsyness, and an inability to concentrate, and combined with reduced ability to breathe, it is a very scary experience!

If you take benadryl, phenergan or other antihistamine, this also adds to the sedative effect, and you can't really tell if you are sleepy due to drugs, lack of oxygen or both.

Once all that swelling takes place, it is near impossible to reduce it all. They have to use IV fluids to keep your blood volume up, and to increase the BP.

I have never injected epi before, but after experiencing 3 hours of "observation", I am determined to use epi no matter what!!! Do you have to loose consciousness on medical people before they will consider using epi????

Take your treatment into your own hands, get to hospital, and while you are there, educate the people who treat you!!!

I still remember the time I taught a doctor how to put my arm into a sling. I was 10 at the time! These medico's often don't cut the grade, or have to follow policy so they don't get sued. Its obviously better a PA person dies from the allergy, than at the hands of an incompetent doctor!!! Moral - TREAT YOURSELF!

Take care everyone!

On Sep 1, 1999

PattiR,

Has your child had CAP RAST for strawberries? I posted under strawberries on main board and asked some questions there too. Has doctor told you what levels are high for this food or when they might consider a food challenge?

Thanks for any info,

JanB.

On Sep 1, 1999

Jan B., My son was tested when he was 2. He is now 7 and I don't remember the exact test result. All of his allergies were very severe. At the time, the numbers did not mean anything to me. I was just told that his reactions were very high. They never mentioned the idea of challenging him and I am in no hurry to do it. He has never had another strawberry reaction since that first one.

On Sep 2, 1999

PattR,

Thanks for the info. I'm glad that he has had reaction to strawberries since he was one. My son has never eaten real straberries but his teat was in the high range. He can eat the Hershey twislers though because I check with company and it has no natural strawberry favor. JanB

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On Sep 30, 1999

Hi Patty My daughter Tiahn will be five in December. She had her first reaction with peanut butter at eight months. We are under a great pediatrician-dermatologist (there are only four in our state) who does skin tests every year. Tiahn also has severe asthma and excema and is considered to be dissabled by our government. It has become a problem with food labeling in our country. We live in Melbourne Australia. I am wondering if there has been a lot of legal problems as I have noticed that each week that I go shopping there is more labels that state "may contain traces of nuts". Maybe it has become mandatory. Shopping is such a drag don't you think? I find it so time consuming and I thought it would get easier but it doesn't seem to be. Anyway I have learnt to just roll with this, if I'm over protective, fussy or whatever, at least I know that while I am with Tiahn she will be O.K and if something does happen I know I can deal with it in a calm reasonable way. I thought I was alone with this sitaution, but it's nice to know that some other parents have the same fears as my husband and I Take Care.

On Sep 30, 1999

Hi, YES, shopping is a drag. There are many things that my son used to have that he can no longer have due to changes in labels. I am not complaining. It is good to know that these things may have peanuts in them. It is very hard on him to learn that more and more things are off limits to him. Here in the US, it is voluntary for companies to add that warning to their labels. I hope that it will soon become mandatory! I agree with you about just rolling with it. We are careful but try not to let it rule our lives. Good luck to you!

On Sep 30, 1999

The labeling issue is so frustrating in the US. On the one hand it is a positive sign that more things are being labeled "may contain peanuts", but on ther other hand I am a believer that the manufacturers are just doing that to save their "butts" if a reaction possibly occurs. I think the bigger problem is how food is manufacturered. I want to try to figure out how we can get laws passed so that food manufacturers can not process peanut and non-peanut foods on the same lines. We need to get rid of the threat of cross-contamination. Does anyone have an idea where we can start?

On Oct 4, 1999

i recently found this website & all the responses are helpful. i do urge the use of the Epi shot immediately in lieu of observation or hesitant on behalf of a parent. we recently moved from the country to live in town & have close neighbors. as i am watching my son in the backyard i see him walk into the neighbors garage. i opened the door & called him & as he is walking toward me he is chewing, he came into the house & i saw chocolate & immediately knew it was peanut filled. i picked him up & on the way to the car i asked the neighbor what she gave him & she handed me the fifth avenue wrapper. we live less than 3 minutes to the hospital, however, upon arrival he was definitely needing the epi shot. the doctor & staff were excellent treating him, however, the doctor indicated to me the shot must be given to him immediately upon finding he had ingested peanut product. one thing i didn't know is the symptoms can occur faster with each anaphalaxes & all my readings since then have been the delay of the epi shot produce worse results. I am more informed about the use now. this is our 3rd experience with visiting the hospital & the best treatment by far. the other trips to the ER have been a joke. i have learned more from other people who have PA than i have from our docters. we also have a 14 month old daughter, has anyone had experience with trying to find out if other siblings have food allergies and how did you go about doing it?

On Oct 11, 1999

Angela, I would ask your Doctor to refer you to an allergist/pediatrician to do skin tests on your baby, I was told that after having one p/a child the chances of having another is one in four. I hope you find a good allergist and have a sucessful outcome. Goodluck.

On Oct 31, 1999

Hello, I just found this wonderful group (courtesy of another friend who also has a nut allergy) and hope to learn and, especially, share what I know re nut allergies after decades of living with them. I'm a 47 year old woman who has been allergic to ALL kinds of nuts (all of which immediately send me into anaphylaxis) since birth. Until recently, I thought I was a bit of a rarity (unfortunately, now I know that's not true). During my life, I have had numerous accidental exposures to nuts (despite cards I carried as a child to show adults pronouncing my allergies and adult experiences grilling waiters and reading package ingredients). Despite my best efforts, I have ended up in ER's maybe 20 times in my life and quite nearly died twice (once I heard the docs actually say "she's gone"). My advice, based on my experience: (1)ALWAYS, ALWAYS carry extra Epi-pens and DON'T be afraid to "waste" one -- or, if you're an adult -- two. Better safe than sorry. I took 6 on a recent 3 week trip abroad. (2) If you have to go to the ER, try to take a friend or relative with you to be your advocate. Panic and your allergic reaction can prevent you from thinking clearly and asserting yourself properly and I once nearly died in a very upscale New York City hospital where I had to be "triaged" and "evaluated" (even though I obviously couldn't breathe) until my husband virtually broke down the door to my examining room and demanded I receive immediate epinephrine. (3)Carry Benadryl with you at all times. (And shouldn't we lobby for an injectible version of this if it isn't already on the market?) The epi-pen alone is rarely enough for severe allergic reactions. (4)When travelling in foreign countries (or, for children, on away-from-home field trips), eat bland. Boring, but, if you can't read the ingredients (or don't trust the labelling), better safe than sorry. (5)DRILL it into your child over and over to say "I'm allergic to all nuts" to anyone who might offer him or her food. (I did this from the time I started first grade.) Then have your child name the nuts they're allergic to (or hand out a card preprinted with all the nut names) to the person they're dealing with -- waiters, parents, teachers, cafeteria personnel or others who might be serving them food. People often don't think, for example, of pine-nuts as real nuts. Because of that, I had a horrible reaction to a meal on a 5 hour flight over water where there was no possibility of landing (and no doctor on board). That experience taught me to carry more than one epi-pen on future trips. (6) Along that line, ALWAYS carry your own food on airplane flights. There's no trusting what the airline's ingredients are and many airlines are unable to include the "nut allergy" notation on your reservation. (7)Be aware -- and this is REALLY bad news -- that your child's allergic reaction to nuts is HIGHLY likely to increase over time (mine certainly has). It used to take a bite of peanut butter to throw me into anaphylaxis -- now if I touch a nut with my finger (which will immediately make my finger itch) and touch that finger to my tongue, it's the same reaction as if I'd taken in a whole bite of pure peanut butter. I know this is scary to hear, but knowing this might save your child's life, if not now, as an adult. My reactions have also changed shape a lot over time, frequently, but no longer always occurring immediately. (For example, if I get a nut on a full stomach, the reaction might kick in as much as an hour later -- and still be able to kill me). The bottom line is this: it is CRITICAL to minimize every possible exposure to nuts. Every reaction, even if medically-managed, makes your child MORE allergic. (8)Last, but not least, I don't know if people are aware (since I haven't yet had time to read all your wonderful posts), but there is a low-tech timesaver/lifesaver you can use to slow reactions if you have nothing else available -- Karo Syrup or, lacking that, any kind of maple or berry syrup. When I was a child in the early 1950's (before anyone had epi-pens), my allergist always had my mother give me Karo Syrup for reactions. I'm very open to medical discussion on this, but my understanding was that, while the syrup would in no way stop the reaction, it WOULD coat the stomach and slow the toxic absorption (though not so much in the throat) to give me extra minutes to reach the ER. Thanks for letting me share. I'd love to hear back from any other adults with similar all-nut allergies, particularly those who find their nut and other allergic reactions changing and/or worsening as they grow older. Aislinn [email]aislinn@value.net[/email]

On Mar 20, 2000

I would like to know if anyone has had a reaction like my eight year old daughter she goes deadly pale and then shivers. she also feels just miserable and needs to lie down. Up to yesterday it didn't happen for a long time but she frightened me when it happened this time. It appears to be getting worse. Please help. She doesn't seem to recover until she had slept for a while. I haven't had her tested lately but i am having her done this week. The last time she was tested the results showed very low levels but i think after yesterday she is getting worse.

On Mar 20, 2000

Aislinn, Thank you for taking the time to write so much! the syrup thing is really interesting! how much etc?

On Mar 22, 2000

Catherine what are you doing for the reactions? Epinephrine? Ambulance? Emergency room? You are not just letting her sleep it off are you?!!! I hope not, I just want to be sure on this thread that you are more specific and that you are taking the reactions (and the allergy) very seriously.

I want to be sure and to let others know more details of what you are doing.

This will help others who read this post in the future also and have not seen your other posts on the other threads.

Thanks.

------------------ Stay Safe,

[email]"Chris@PeanutAllergy.Com"[/email]

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