Stressed out with lots of Questions! 2 Yr Old w/ PA

Posted on: Tue, 03/08/2011 - 12:07am
MrsJewelsRae's picture
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Joined: 03/07/2011 - 12:53

My 2 year old was officially diagnosed with a PA this week. He had a reaction at 22 months after accidental first exposure to peanuts (Peanut M&Ms Daddy left out)- within 2 minutes he had hives, rash, intense itching in eyes and ears, swelling of eyes and tongue. He improved with Benadryl. I was given a prescription for Epi Pen Jr which I keep on me at all times, but now that he was seen by an allergist and officially diagnosed it feels REAL, I was hoping maybe I had exaggerated his reaction, maybe I was over analyzing because I am so paranoid and panicky about peanuts in the first place (have witnessed an anaphylactic reaction in a 3 yr old several years ago, complete with vomiting, itching, and swelling to the point of severe respiratory distress, frantic 911 call, ambulance, etc). Now it`s happening to me and my baby! I am reading everything I can and it`s freaking me out. After getting home from the allergists I found myself with so many questions and wish I could go back, but he is not available until the end of March as he is on vacation. They did a skin test testing him for milk, soy, eggs, peanuts, peanut butter. Why don`t they have an info session for parents of severely allergic children!??? There are some very important questions I need answered! The doctor said that his skin test indicated a severe allergy to peanuts and an allergy to eggs with the possibility of causing a severe reaction (only in lightly cooked or raw forms like fried, scrambled, etc- baked is fine in cookies, pancakes, etc). The doctor recommended a blood test for further info so we are waiting for results on that.

If I may bother those of you with experience to lend me your ear and give me advice or links, I would be so grateful! I am so nervous...

- How many Epi Pens should I have? I`ve heard that I should have 2 because the effectiveness of the 1st shot can start to wane after just a few minutes and the child may need more before emergency medical help arrives (my paramedic friend told me this). True? (and why did my family doc, pediatrician and allergist not inform me of this???)

- When do I give the Epi Pen? What if I wait too long because I am not certain it is a reaction? What if I give it too early and it turns out it was not a reaction after all?

- What is the reliability of the skin test? Does the size of the welt have anything to do with severity? My doc said that in his experience a 3mm welt indicated an allergy, 8 mm welt often indicates severe allergy, my ds` welt was 15mm! But I was told on another message board that there is no way to indicate the severity of an allergy...??

- Are there different blood tests? Which one was likely done on my ds? I`ve heard of RAST, IgG, and IgE- which one is most reliable and should I request further testing? Can these tests determine severity of an allergy?

- Shouldn`t they test for other allergens - tree nuts, shellfish, etc? The nurse said they don`t like to do too much at once. Thankfully he handled the skin pricks and blood draw like an angel, didn`t flinch, just watched with interest!

- Why do people die from anaphylaxis even with epinephrine and medical treatment? I was reading about Sabrina`s Law in Ontario (my home) and she was given an epi pen, but she still died.

- What is the actual risk of my son dying from this? I know it is morbid, but I am so worried about it! :(

- What about food? Potlucks? Visiting people`s houses? Should I always just bring my own food? I mean, I can`t read all their ingredients of their homemade stuff- like pot roast, etc. If they verify they didn`t use any peanut products in their pot roast is it risky to give him some meat and potatoes? I stay far away from other`s baking, just don`t trust it.

- Package info, if it doesn`t have a peanut warning ("may contain...", "manufactured in a facility...", "processed on shared equipment.." etc)- can I feed it to him? Things like Robin Hood flour- there`s no warning, so do I have to call all these companies to ensure they are safe?

- Am I being overly protective that I won`t let others kiss him?

- Any good websites I can direct family/friends and church to? My church has made an announcement for "No More Nuts" and told me they`d stop buying peanutty candy but I need them to realize the absolute severity of this. I feel it was too casual and they didn`t consult me nor was I even present when they made the announcement, I don`t think people really get it. I feel like printing out that story about the Brantford, UK boy that nearly died after biting into a Quality Street candy handed to him by a substitute teacher at school, print off the picture of him with the ventilator taped to his face, heart monitor on, etc and write at the bottom "This Could Be GIDEON with JUST ONE BITE. Please help us keep him safe. Thank You." Tack it on the bulletin board in the foyer. Too dramatic and abrasive???? I don`t know...

I may have more (!!!!) but I have to run for now! THANK YOU SO MUCH!! :)

Posted on: Sun, 03/20/2011 - 2:09pm
nutallergymum's picture
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Joined: 03/08/2011 - 21:57

Hi I sympathise with what you are going through, my son was 2 when he had his first reaction, I am allergic too so it made it a bit easier as I knew what was going on. I have just started writing a blog which will answer many of your questions and concerns, these are from real life experiences not just out of a text book. The website is www.nutallergymum.com, if you would like any specific question then please email me and I will be happy to help, I've lived with this for 38 years so there isn't much I haven't experiences.
Kind regards
Karen
www.nutallergymum.com

Posted on: Sun, 03/13/2011 - 10:01am
mom on a mission's picture
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Joined: 08/27/2009 - 18:26

It's disheartening to leave the doctor's office with a positive diagnosis and realize how many questions you still have. Knowledge is definitely the key to dealing with a severe food allergy. I started doing research 7 years ago when my 18 month old daughter was diagnosed with a severe peanut allergy, and I haven't stopped. Like Karen, I document all my research in a blog as well as our participation in a peanut clinical trial at Duke. Your best bet is to get on the internet, read blogs, participate in forums and google everything that comes to mind.
My blog is www.peanutclinicaltrial.blogspot.com. I've answered almost all of your questions in various blog posts. You can use the Label index to the left of the blog to help find the posts or the "Search this Blog" at the top. If it's still just too much to take in, contact me, and we can either e-mail or set up a time to chat.
Good luck!
Mom with a Mission

Posted on: Sun, 03/13/2011 - 4:11pm
lilpig99's picture
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Joined: 12/22/2005 - 09:00

Sorry to hear about the diagnosis. Knowledge is power. Readas mu h as youcan on sites like www.foodallergy support. Com.
Best wishes!

Posted on: Sun, 03/13/2011 - 4:12pm
lilpig99's picture
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Joined: 12/22/2005 - 09:00

Sorry to hear about the diagnosis. Knowledge is power. Read as much as you can on sites like www.foodallergy support. Com.
Best wishes!

Posted on: Wed, 03/16/2011 - 7:51am
nicksmom2448's picture
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Joined: 09/16/2009 - 08:52

Hi there,
You are not alone! I wish I'd seen your post sooner, but I just now logged on after a long absence! I understand how you feel! This must be so overwhelming and scary!
My son was diagnosed with a severe peanut allergy when he was 14 months old. He is 13 years old now and a happy healthy teenager, but still allergic to peanuts.
I believe there is so much more awareness and knowledge about food allergies than there was 12 years ago! I didn't get much information from our pediatric allergist either and had to do a lot of figuring it out on my own too!
You've come to the PERFECT place to get more information. Don't forget to check out the Food Allergy and Anaphylaxis Network---they are awesome for information and products. http://www.foodallergy.org/
I went to one of their conferences last year and it was so helpful. Also check out local support groups in your area.

Posted on: Tue, 04/05/2011 - 1:39pm
PA Mommy's picture
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Joined: 04/05/2011 - 19:56

I feel your pain. My son was diagnosed last october at 2 years, too. My first thought was to move out to DHs hunting property and homestead where no peanuts could get us. It's tough, but start small. I ended up initially going back to basics. Totally from-scratch cooking with few ingredients and adding a "safe" product when my nerves could take it. Check out "The Peanut Allergy Answer Book" on the FAAN web site. It's my bible.
Your son will be okay. You are obviously going to do what it takes. And believe me, it will get better. Yes, do get the double epi-pen. Stay away from pot-luck foods (besides, they're usually disappointing, anyway). If we're going somewhere questionable, I usually bring him a ham steak (he loves ham) and DD whines wanting to split it with him! Also buy him a cool lunch box and fill it with goodies (maybe a plain hershey bar or snack pack, tootsie pop, granola bars from peanut free planet or meta balls from vermont nut-free chocolates) The goal here is to make his lunch box contents so cool he won't care what the other kids have.
A few things that help make our tough times easier:
Hershey products. Frito lay. Betty Crocker. Breyers Vanilla ice cream. McCormick seasonings. Yogurt (we freeze it for flavored ice cream...most ice creams are risky). Cheese cubes. Fruits. Do some research. There is a lot of help here and lots of friends, too.
Oh, and watch relatives. I've found they are more likely to serve up a bad food than a total stranger. Sad, but true!
God bless!

Posted on: Wed, 05/04/2011 - 4:10am
Samantha418's picture
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Joined: 04/11/2011 - 12:44

I am 22 years old and was diagnosed with a peanut allegry when I was 8 months old. I always have 4 epi-pens, and I never let them expire before I get a new one. Skin tests are more accurate the less you test at one time, same as blood tests. Nausea and wheezing are some of the beginning signs of anaphylaxis, and my doctor advised me to use my epi-pen if I start to feel these symptoms. Also look out for hives as well. I never eat at someone else's house unless I can read the ingredients or I know exactly how it was prepared. I hope this helps, and let me know if you have any other questions! Also you can read my peanut free blog.

Peanut Free Store

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