Hey! I'm Brandon and I've survived 26 years with a severe peanut allergy. I've had a couple close calls, almost died a few times, but have learned to manage my allergy without sacrificing my quality of life (for the most part).
My reactions are cyclical in nature. I'll have a reaction, sometimes anaphylactic, sometimes not, become hyper-aware of every peanut product everywhere I go, ask everyone I meet if they've been around or eaten any, and otherwise be paranoid. Then I'll relax little by little until I almost seem normal and unhindered. This is when I slip up. I'll forget to ask if peanut flour was used to thicken the chili, or if someone I'm sharing food with ate a Reeses earlier in the day. I'll have a reaction, and the process will start over again. I have learned from each incident. The peanut flour was a new discovery, stumbled upon the hard way.
I accepted that I would carry an Epipen everywhere I went for the rest of my life when I was 16 (and dumb) after I consumed part of a peanut 20 minutes from definitive care (I coded three times at the hospital). I also suffer from anxiety and panic attacks brought on my convincing myself I ingested something when I hadn't. All in all, it's a challenging life to lead. The unfortunate truth is, similar to riding a motorcycle, it's not if, but when you will have an accident.
Be prepared, carry an Epipen, or better yet Twinject, and make sure you and everyone around you knows how to use it. Also carry a half dozen or so Benadryl Strips. They fit inside an Epipen case or wallet, and (I believe) provide relief quicker than other types (except maybe the liquid which is a hassle to carry). If you've as lucky (and stupid) as me you might be able to manage a reaction without going to the hospital with a regiment of epinephrine, benadryl every 4 hours, and a taper of prednisone (I discourage this, but I don't have insurance).
It's a long hard road to walk, but I've done it and so can you (or your child)!
Thanks so much for your story. Can I ask you what your experiences were as a child? Did you have many reactions? Were you very conscious of not being able to eat like the other kids?
My 2 year old was recently diagnosed, so I'm still figuring out the best way to manage it and still have her feel as "normal" as possible as she grows older.
Brandon--thanks so much for coming here to share.
It really is helpful for us to hear from an "adult" with food allergies and to hear a male perspective. (I have a 7 yr old son.)
It sounds like you were raised well. I'm glad to hear that you carry your Epi religiously and that you seem to really take care of yourself. Good for you!
Interestingly I have suffered more reactions as an adult. My first really severe reaction was when I was 8. I suppose that I should attribute this to my parents, who were extremely careful and diligent with managing my allergy. I believe that I was also very fortunate that my mother taught in the same school district that I attended so she was very involved with my teachers and administrators. Your daughter will grow up with the added benefit of Peanut-Free Zones and the like.
At a early age I remember associating the smell of peanuts (which I am very keen to now) with being sick so I avoided it as much as possible. Depending on the severity of your daughters's allergy I would consider introducing her (in a controlled environment) to the scent of peanuts, peanut butter, etc. and make an effort to create a negative association. I can smell a pb&j if it's within one-hundred feet of me. I've also learned to smell it lingering on people, which has saved me in many situations.
The unfortunate truth is that parents of children without severe allergies just don't get it. They'll refrain from giving their child a pb&j, thinking that they're being responsible, but then they'll give them a peanut butter cookie. Or they'll give their child a peanut product before they go to school, and your daughter will come in contact one way or another and have a reaction. This has been my experience.
As I said before, until your daughter gets old enough to manager her own allergy, keep bottles of Benadryl and two Epipens (or a twinject) everywhere (school, friends houses, your cars, a backpack that she carries... everywhere) and make sure anyone (teachers, any adult, neighborhood teens) that she is around knows how to use it. Most state employees are trained to use Epipens, otherwise it's pretty simple to follow the directions. The issue is the followup after the initial reaction. Many people don't know that epinephrine lasts at most for 15 minutes at which point a second dose needs to be administered if the Benadryl hasn't begun to relieve the symptoms.
One day I asked my mother how she dealt with my allergy and her response was, "I knew that I couldn't protect you forever. I accepted that one day I'd get the call that you were in the hospital, and I'd know it was bad, and that I did everything I could to prepare you." I understood at that point that she did everything she could as a parent given the situation. She had prepared me to manage my own allergy, but accepted as I have, that I will have good days, and bad days alike. You'll find that you can't rely on other people to manage your daughters allergy. It's going to be you, and her alone.
Thanks for the information! It helps to hear from someone who lives with the allergy, and not just parents trying to manage it. I appreciate you taking the time to respond!