jovie had her 1st anaphylactic reaction after eating a peanut butter & jelly sandwich at 11 months old. when i looked back on it, this happened in november '06 and i had been eating reese's peanut butter cups from the halloween stockpile daily for a couple weeks. i had also noticed from halloween to her reaction in november, that she began to have episodes of vomiting in her sleep, after nursing to sleep. the scary part was she'd vomit everything in her stomach and not wake up - i'd find her sleeping in it still when i came in to check on her before i joined her in bed or at naptime once. i'd called the pediatrician about it and we were going to set up an appointment to discuss reflux. it didn't make a lot of sense to me, because she'd already completely grown out of that baby spit up stage and i wouldn't have said she could have reflux or GERD at this age.
then the fateful bite of a brother's sandwich (she'd had peanut butter several times already) and within 20 minutes her face was swelling, she was crying and coughing and wheezing and her lips were beginning to tinge blue at the corners. i'd also just given her a dose of antibiotics for strep and wasn't sure what was causing the reaction, but an urgent call to the ped and some benadryl while i kept an epi pen right in my hand all the way to the hospital took care of it.
testing confirmed severe anaphylactic peanut allergy and we went peanut free. (i laugh now at what a hardship i thought that was!) over the next 3 yrs, she had 2 accidental exposures. one in the grocery store when she rode in a shopping cart shaped like a truck and rubbed her face and eyes while in there. her eyes swelled 1st and we caught it quickly enough that benadryl stopped it before it got worse. the next one happened in a movie theatre, when they either used peanut oil on the popcorn (we asked, they said it was soy but i wondered if they were mistaken) or she touched peanut butter residue on a chair.
she started having the reaction while we drove home in the dark and she was sleeping in the car. it seemed to progress differently in her sleep, because it took longer to progress and our 1st sign was that she vomited up the entire contents of her stomach about an hr after leaving the movies. then she began to cough and wheeze in her sleep, her lips swelled, hives appeared up her neck and face, her lips started to tinge blue and we had to use the epi-pen. that was about 2 yrs ago.
which brings us to current times, last october, 2010. she turns 5 at christmas and my mind has been worrying about when she starts school. our school is pretty allergy aware, but only the classrooms are nut free. nuts are permitted in the lunchroom. if someone has a peanut butter and jelly sandwich and touches something like the faucets in the bathroom or the door handle after lunch... and then jovie comes along and touches them and then rubs her face and it gets into a mucous membrane, that's it, she can have an anaphylactic reaction. her allergist felt we should wait until before she starts school to retest her peanut allergy levels as even the pinprick skin test is exposing her to peanut enough to potentially sensitize her further and make it worse.
so i called and made an appointment to have her retested for school, so i'd know exactly what accommodations i might need to make - or ask the school to make - for her. honestly, i'd read that extended nursing can help with severe food allergies like this and had heard specific anecdotal stories from other parts of the world about children her age overcoming allergies like hers completely (ie, pecan allergy in africa) when the mother cut it out of her own diet completely as well and continued nursing long-term. since there are no studies available on women who nurse this long in the U.S., my daughter's allergist couldn't offer me hope that it would help, but he also said, it certainly couldn't hurt. so i was definitely harboring a secret irrational hope that i had helped "cure" her by nursing this long. he told me something like 95% of all children this allergic remain so for life, but you know what they say about hope. it springs eternal.
so, on november 2, 2010, we took her to our local hospital for a RAST (blood) test. this way it wouldn't expose her directly to peanut protein. it came back completely negative for peanut allergy. i was ecstatic. her dr. cautioned us that it could be wrong, could have been mishandled somehow...he said he was shocked to see that result and wanted to follow it up with a skin scratch test, which he feels is more accurate. i agreed and made cupcakes to celebrate what i just knew was going to be confirmation that breastmilk's magical, living properties had rewired and healed her immune system to respond normally again. the skin test on november 9, 2010 was also negative and the dr. was speechless. she did come up moderately allergic to cashews on this test, but i hardly cared, i was so excited about the negative peanut results. i passed out homemade organic corn, egg, dairy, soy, gluten, peanut, tree nut, bean free cupcakes to all the staff in celebration. jovie declared, "this is the luckiest day of my life."
while we sat in the office, awaiting dr. b's final instructions, don asked me what this meant as far as how we proceeded with peanuts for jovie now. i didn't know, but i said i guessed we'd still not feed them to her directly (why tempt fate, right? and if she was that allergic once, it seemed to make common sense that she'd be at more risk to become so again... (and hadn't i read somewhere like FAAN once that some deaths happened because people thought they were cured of a serious allergen like nuts of seafood/shellfish and were eating that item regularly with no epi-pen on hand and suffered life-threatening reactions? still not sure if i actually read this or just imagined i did...) at any rate, i said, "i bet he comes in and tells us we just don't have to worry that she will die at school from accidental exposure, we don't have to make the school go peanut free in the lunchroom now, she doesn't have to carry an epi-pen anymore and we don't have to live in terror that she can be killed by a random smear of food! but i bet it's not like she can eat it again or anything and i don't know if he'll say we should bring it back into the house for the other kids, we'll have to ask him."
dr. b. still just couldn't believe the results. when we asked him about jovie and peanuts now, he held up his hands and said he didn't want to assume she was truly over her allergy until she did a food trial with peanut butter in his office. he said this was extremely unusual and almost unheard of, for a child her age, at her severity, to overcome it so quickly. we agreed to the food challenge and set the appointment for november 16, 2010. she stayed there for over 2 hours and had no reaction whatsoever to first the smear of peanut butter on her lips and then from a spoon.
we were ecstatic, dr. b. shook his head in disbelief even as he gave us the final verdict, grinning all the time. imagine our surprise when he told us what we had to do now was give her peanut butter every week, to keep her body used to it, recognizing it and staying 'immune" to it! i asked if he was sure this was what we needed to do and expressed how scary it felt to give it to her like that, but he assured me this is the protocol for anyone who's overcome a serious peanut allergy. so, away we went to embark on our life with a "cured" life-threatening peanut allergy child!