We need info and encouragement

Posted on: Sat, 06/26/1999 - 12:48pm
Ginger's picture
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Joined: 11/17/1999 - 09:00

Our son (13months) had a severe reaction to peanut butter this past Tuesday. I gave him less then 1/2 teaspoon spread out in a sandwich. Within 2 minutes he start to swell and break out in hives. I rushed him to the doctor , (who is 2 minutes away) and that was barely enough time. His top lip had swelled so bad it touch the bottom of his nose. His left eye was completly swollen shut. And horrific hives covered his body all within 10 minutes! He was given benedryl and epi. He has since been tested and he is now categorized as having a life threating allergy to nuts. This is such a shock to us and we just don't know where to begin. We also have a 3 year girl( who has no known alleries) and have thrown out all nut containing food, but I have read about all of the food products who don't label the ingredients properly. I am so concerned and afraid. We have been taught how to administer his injection. I have been told to NEVER leave with out it. Will he have a normal life? Can he go to a friends house one day to eat dinner? Can he eat cupcakes in school? I would love to hear from anyone with similiar situations or advice.Thanks-Ginger

Posted on: Sat, 06/26/1999 - 2:00pm
DebO's picture
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Joined: 03/15/1999 - 09:00

Hi Ginger
Believe it or not, it does get better. This website is very useful for educating yourself - and friends. Eventually you will know which friends and family take the allergy seriously and you will start to have a more normal life. My daughter eats out at McDonalds, goes to daycare and spent Friday night at a sleepover at a friend's house (she is 4 1/2). The first couple of months are tough, but once you get used to which foods you can buy (even though you still check all of the labels) it is fairly easy to keep your own house safe, at least.
Good luck and use these boards for information and support!
Deb

Posted on: Sat, 06/26/1999 - 2:01pm
justinsmom's picture
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Joined: 04/10/1999 - 09:00

Ginger
We all can understand the panic in your voice. It is a terrible allergy, and leaves all of us in a state of panic when our children are diagnosed.
My son had a similar reaction as your son at 15 months. I am so happy to say that he will be 6 in November and Thank God - has not had another. It takes alot of patience, and diligence. We need all of the people in our lives to understand the severity of this allergy. If you can trust your friends ( I have one friend that reads all her labels every time she shops - this way she knows what he can't have. She also reads everything before he comes, and stops giving her kids anything that may contain for a few days before we visit.) She is one of the only people that I am totally comfortable leaving him with. Even my mom is not as careful as she is.
Your son can have a happy life - he will have to always be aware, and it will be a little more stressful for him to do everyday things. My philosphy is that it is only a peanut allergy - we could all have much much worse illness to worry about. I tell him all the time that yes - it does not seem fair that he has this - but he is lucky that he can run and play and basically live a normal life.
I would suggest that you may want to carry 2 Epi Pens on you at all times. Keep up with the posts on this board - the people here understand what you are going through and there is alot of wonderful advice and suggestions here all the time.
Good Luck
Donna

Posted on: Sat, 06/26/1999 - 11:12pm
MaryLynn's picture
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Joined: 06/25/1999 - 09:00

Ginger, What a scarry way to find out about your son's peanut allergy. My daughter would throw up, and since I was not getting any help from my pediatrician "it's just fleghm (sp?) from post nasal drip" was the first comment, I didn't figure it out until she was 2 1/2. We had to switch dr. to get someone who would treat it seriously.
My daughter is 4 1/2 and getting ready to enter kindergarten. The school she is going to is willing to work with me to meet her needs and keep her safe. They do suggest that I will have to sent in a special snack on birthday parties to ensure her safty. This I am willing to accomidate, esp. since we just found out she has devleoped several new food allergies, one of which is soy.
My daughter did attend a nursery program that would read the labels of all the snack foods and had been trained in using Epi-Pens and let her keep her pen in her bookbag in the classroom! It was a great experience for her and me. My allergist has recently told me to let my daughter be a kid and enjoy as much of life as she can. It is hard to do this, but we have a great support of friends (many made from the nursery school) and family.
Good luck and stay safe. Marylynn

Posted on: Sat, 06/26/1999 - 11:58pm
Shan's picture
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Joined: 04/05/1999 - 09:00

Hi Ginger. We found out my fifteen month old dd was PA a few months ago. We have had two scary experiences similar to yours. I know how scary it must have been for you. I'm glad your son is doing fine. This site has been a miracle for me. Everyone on here is so nice and helpful. I have already learned so much by reading these posts. I just check on them at least every other day so I can keep up! LOL Please feel free to e-mail me if you need any support. I remember crying for days, but I'm now getting a real handle on things. I'm so glad to hear you were given an EpiPen right away, I had to deal with bad peds who wouldn't give us one at first! UGH!!! Shan

Posted on: Sun, 06/27/1999 - 12:01am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Hi Ginger! I would recommend that you join the Food Allergy Network [url="http://www.foodallergy.org"]www.foodallergy.org[/url] . This non-for profit organization has an excellent medical board with leading food allergists. They also have educational materials which will not only help you educate yourself and others about food allergies. I would encourage you to also enroll in their peanut/tree nut registry. This registry is used to gather data about the peanut allergy and has already had some of the data published in the Journal of Allergy and Immunology.
Other great sites to explore inclued the American Acadmey of Allergy Asthma and Immunology [url="http://www.aaaai.org"]www.aaaai.org[/url] ; and [url="http://www.allerg.qc.ca/peanutallergy.htm"]www.allerg.qc.ca/peanutallergy.htm[/url] - These site have links to a lot of studies and abstracts.
Stay Safe!

Posted on: Sun, 06/27/1999 - 1:06am
Tammy Lynn's picture
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Joined: 06/26/1999 - 09:00

Ginger,
I know how you feel. My daughter had her reaction similar to your child's at 18 mos. If I had not been with her, I would not have recognized her because she was so swollen. Afterwards, I was scared to death! It does get easier. She is now 8 years old. She goes to school, participates in activities and went to day camp last week. She is very careful and questions everything she eats. She will not eat anything unless the label is read and then if she has doubts, she still won't eat it. It is all she has every known and it is now second nature to question everything and read labels. I have taught her to use her EpiPen. Even if her eyes swell shut, she can still tell someone what to do. You will always be careful but evidentually it will become second nature. She knows this is life threatening and I have been very honest with her. She has to be aware of this just like I am. She still has a normal life and in her eyes, she is just like everyone else...she just can't have peanuts. Take care and remember...it gets better.
------------------
Tammy Lynn

Posted on: Sun, 06/27/1999 - 6:22am
Anonymous's picture
Anonymous (not verified)

Hi Ginger! Welcome to our world! I echo what everyone else has said: at first this allergy is very scary, but you will gain a sense of confidence as you learn to live with it day-by-day. You have found a great place to learn and gain support! I agree with Shan that you should try to keep up with the new posts, but also go back and read some of the older posts...there is a wealth of information to be found from personal experiences to case study reports and links. Also, I would recommend that you get your son a Medic Alert bracelet (you'll find the phone number and a link on the Main Discussion Board).
Like Tammy Lynn, my daughter had her first reaction at 18 months and is now 8. We are a very active family and are constantly on the go. She goes to sleep-overs and birthday parties. We do camping trips with our church and friends. She goes to public school. This allergy has not stopped her from doing any activities, it only changes the way we go about doing them. You must be prepared and you must plan accordingly.
Good luck and best wishes as you venture into the world of P.A.! I look forward to hearing from you.

Posted on: Fri, 07/02/1999 - 5:41am
clara's picture
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Joined: 01/17/1999 - 09:00

Forms of hydrolysed and partially Hydrolysed plant protein are ingredients that will no longer be in your shopping cart. You will find them in some soups and stews, crackers etc. The good news is that not all brands are the same.
Don't be afraid to call manufactures to check on any product. Most companies are aware of this allergy and can help you decide if you want to buy their product.
My daughter was also young when she had her first reaction. You are doing the best thing for her by educating yourself and starting to make her home environment safe.
I've joined a terrific support group and talking with others with allergies has helped me through this tremendously.

Posted on: Fri, 07/02/1999 - 8:53am
tracy's picture
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Joined: 02/03/1999 - 09:00

Ginger,
Your emotional reaction is very common. It took me about a month to calm down. Most of us have gone on the emotional rollercoaster.
I've learned that it's very easy to avoid peanuts at home. We are a lot more careful when we eat out, which isn't often. When eating out I've discovered "macaroni and cheese" is pretty safe, so we usually order that and fruit if those choices are available. We've also discovered a restaurant that has been very understanding... the manager told us there is no peanuts or peanut oil in the food except for a peanut topping on one of the salads, which is prepared in a different part of the kitchen from all the other food. So we feel really safe taking our child there, but we always tell the server about his allergy each time, in case the menu changes.
There are positives to this allergy... my experience is that my son is eating healthier now than he would have if he didn't have the allergy. I make all his food (using lots of vegetables) in large quantities and freeze meal-sized portions. He eats better than most children. If he didn't have the allergy, I would probably be tempted to eat out more. So that part has been good.
Other good news:
There is a study that found some children do outgrow the allergy, contrary to what we've all been told. There's some controversy about the study, but there is also some anecdotal evidence that indicates some children do outgrow it. I think a good way to deal with this news is "Plan for the worst; hope for the best."
Secondly, there is quite a bit of research into treatments and cures for the allergy. The offending proteins in the peanut have been identified (a major step) and my understanding is there are several initial studies with mice and maybe even a start with humans trials. (See the "Research" discussion group for the latest information.) The not-so-great news is that progress is glacial and it may be as long as 10 years before something is available. But if you can keep your child safe for 10 years, it's better than having to face dealing with it the rest of his/her life.
I'm starting to meet more and more people who have this allergy and who live good lives. The chance of a fatal reaction is very real, but statistically you are more likely to die in a car wreck. Also, studies have shown that most of the people who have had fatal reactions didn't have epinephrine with them, or who made foolish decisions. (Unfortunately, I heard that quite a few teenagers don't carry their epi-pens and tragically, that's the age group where quite a few of these deaths occur.)
The public is starting to understand the seriousness of the allergy more, although it's still a very misunderstood problem. I run into many people who know a lot about it. I meet just as many who don't know anything. I just try to educate our friends and family and ask them to be supportive and understanding. My best advice with people who are hostile or don't understand is to just walk away. You cannot change their minds and trying to do so will make it worse. Also, keep in mind that the way you handle this allergy will have a major impact on how your child handles it. If you live in fear, he/she will live in fear, etc. etc.. I have gotten some counseling on this -- it's easier said than done, and I am practicing every day on my reactions.
And finally, do join the Food Allergy Network. They have wonderful resources. I attended one of their Patient Conferences and learned quite a bit -- it was so useful I'm planning on going again and taking my husband.
--Tracy

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