Epi Pens

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New to this and just read the in memory thread....dying inside. Bring me down...how often does it happen where a child needs the epi pen? Do most with PA live a nice long life? I am freaking out here

On May 15, 2007

I have 2 adults friends who have been dealing with this for 40+ years and my son has needed NO Epi-Pen for his almost 10 years with diagnosis.

Try (as best as possible) not to panic. I am always pleased to see few (and far between) postings on the Reaction Board.

On May 15, 2007

Thanks, good to know. I assume this is due to you being very good about what he eats. I am worried, I guess as I live with it for a while with her I will be in a better place. For now I just want to make sure she has a great quality of life and a super long one

On May 15, 2007

Hello and welcome! I'm so sorry that your introduction to the board is the "In Memory" thread. I still can't read that thread without crying, and I've been dealing with my son's PA for five years now.

To answer your question, yes, most PA people live healthy, normal lives. You'll meet some of the PA adults here who have been dealing with PA long before there was proper labeling or the type of support you get today. There are no reliable statistics on PA deaths, but they are rare, especially if epinephrine is used immediately.

Dealing with PA is a balancing act, but I try and think about it as I would any common-sense method of protecting my child. I use car seats, and require my kids to wear bicycle helmets. I signed them up for swim lessons, and supervise them closely at the pool. I lock away household cleaners and other potential poisons.

Does that mean my kids absolutely won't die in a car crash, or in a bicycle fall, or drown, or be poisoned? No, but I don't let those possibilities stop us from enjoying life to the fullest.

These boards are a great place for practical information and support, but at times the emotions here can become overwhelming. If you ever feel yourself becoming too stressed by the boards, it's okay to take a little break. We'll be here!

On May 15, 2007

(((( HUGS )))) I went through that feeling of fear and terror too but.. .it passes with time. You'll educate yourself, others around you and learn more and more. Knowledge is a powerful thing. Acceptance is too if that makes sense. Hang in there!

On May 15, 2007

thanks to all. it makes me feel better to hear this. I look at my adorable outgoing sweetie and can't believe this has happened to her. I know she will be fine and will have a wonderful life, just need to get past this initial shock.

On May 15, 2007

My 6yr old has actually had some pretty bad reactions(to peanuts, pistachios and eggs) and I should have used the Epi about 5-6 times in his almost 5yrs since diagnosis. I've learn 95% of my food allergy knowlege in the last 9mths....so I am hoping all his *close-calls* will improve greatly with my continued qwest for info. There is alot to say that I *should have* used it...because of course he is still here and all is fine. It's just I always thought the Epi was for when they were *out* (passed out, unconscious etc....) and that isn't true. Our last allergist said "there will be a time when you need to use the Epi, so don't be afraid of it, be prepared to use it". So now I am! HUGS

------------------ Chanda(mother of 4) Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma) Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma) Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig and EE) Savannah-1 (milk and egg)

On May 15, 2007

Here's a thread that might help. :-)

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum3/HTML/001688.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum3/HTML/001688.html[/url]

On May 15, 2007

Welcome! I'm sorry you have reason to be here. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

I've only been dealing with PA for a year, but no Epi. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Sometimes I think I can handle the Memory thread now, but I still find it extremely difficult. *I* would avoid it for now--just read what you can about keeping your child safe.

If you get too overwhelmed here, just take a break.

You can do this! We're all here to help.

Jen

On May 15, 2007

Hi! I'm PA (became allergic at 26) and I'm now 37. My son has been PA for 4 years now. You have to be careful but don't let it scare you where you don't enjoy your life. I sometimes get those days when I get overwhelmed but it's not everyday. Be careful and just make sure you are prepared in case anything does happen and try not to let it consume you. I sometimes get so concerned with PA worrying about my son then I get into my car and don't even think about the 50/50% chance of getting into an accident. Anything can happen to us anytime and sometimes I catch myself focusing so much on PA. It does get hard sometimes but I have to say that it's really not hard avoiding peanuts. I have other allergies and so does my son and it makes it harder than when all I had to avoid was peanuts. Most companies label for it. I always carry wipes on me. We go to the movies, the park, museums. We try our best. I'm glad you found this board because I didn't find it untill recently. It has helped me understand a lot. ((hugs)) It will get easier.

[This message has been edited by momll70 (edited May 16, 2007).]

On May 16, 2007

Hi Pinkysmom, The scary thing about reactions is that you cant tell how any individual reaction will progress. Next, the testing is ambiguous so that there is no way to say for sure that a certain allergy will/wont cause anaphylaxis.

There are fatalities and they are often to trace amounts of food, as in Sabrina Shannon and Emily VonderMeulen's cases.

These girls were different in that Sabrina was well aware that food could really hurt her but Emily was not aware of the severity of her allergy.

However, if you look at the huge and growing numbers of food allegic children in the US (up to 5 million kids and up to 12 million adults & children) and then you look at the number of fatalities @ 200 (granted that is not a solid number) The fatalities are very rare.

It is still an invisible condition, and as is often said, "there is no day off" Once you know, you must be forever vigilant.

However our kids can and will go off on their own and we will gradually put them down, let go of their little hands, and then watch them walk, run and even drive away from us.

We are lucky in that our kids will leave the nest. Others with more severe disabilities cant say that.

And although I've cried many times for my son after a trip in an ambulance or when I peeked into his preschool class and saw 15 kids eating a cupcake with sprinkles, and my little guy was eating his wheat-free pretzels, I also know that in other ways, we're lucky.

You can manage!

Take care, Gina [url="http://www.allergymoms.com"]www.allergymoms.com[/url]

On May 16, 2007

Personally, I don't believe in reading the memory thread. It seems exploitative, and it doesn't do anything to keep our children safer. All it does is create panic, and panic is not the right frame of mind to deal with things. Bugs me that it's even here and that people thing it's a good thing.

There. I've had my say and I feel better.

Yes, most kids will lead a long, long life, even with food allergies. Thank God we have Epi-Pens! What did parents do before them? Try to repeat to yourself that almost every food reaction can be dealt with. You cannot live waiting for the bolt of lightning.

I should know. I live in a house that was hit three times. We survived. ;o)

On May 16, 2007

hi i am new here, i just read the post about epi pens and the thread story. today my 16 year pa daughter was in school and the phone rang and the nurse told me that she was having an anaphalytic reaction and they asked me to meet her at the hospital. this was not the first time this has happened, the same thing happened last feb and last sept, and several other times, but today we got lucky, she is home now and feeling much better. lately she has required multiple epis and a few nights in childrens, the last time she was intabated. )and she is allergic to bendryll)for the most part she tries to live a normal life. she has many many life threatening allergies, but hse is very responsible about reading everything and always brings her own food out.i know she gets scared and angry but she is tough. her friends are awesome they come to see her in the hospital. we have a few very scarey episodes but she gets through them with a smile on. we dint live like she is dying or anything, she is going to live a long life and a as norrmal as she can life. just be sure to stay strong always have and epipen or two on you and read everything you eat. take care traci

On May 16, 2007

Hello and welcome, Traci! Just wanted to thank you for sharing your story - you must be very proud of your daughter

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