Jovie's UN-cured Anaphylactic Peanut Allergy

on december 5th, i gave jovie her 3rd dose of peanut butter at home, as was our new sunday schedule. i like doing it then because we're usually home all day and i can watch her carefully for any reactions. which, by now, i really wasn't worried about. until she came upstairs about 15 minutes after eating it with a bright red, clownish rash around her mouth again. it wasn't the rash that worried me, we'd been battling that same irritation around her mouth for a couple weeks now, it seemed to flare up when she used certain toothpastes and had happened to my other kids from new toothpastes when they were younger, too. it was the fact that she said her whole body was itchy.

sunday is housecleaning and animal washing day (we have one low-allergen great dane and 2 ferrets and all hardwood floors, so even my very dog-allergic multiple food allergy guy is hardly bothered by the animals) and she hadn't yet had her shower and was still in her long nightgown, so i wondered if it might be just from the cleaning going on, the dry forced heat or from not showering yet and feeing ashy.

i lifted her gown and checked, everything looked fine. i told her not to be silly and go play. she kept hovering, scratching and rubbing ceaselessly, all over her torso, neck, face, arms and legs. then she began saying her throat tickled and itched. now a red flag went up in my mind. i brought her into the room i was in and stopped what i was doing and looked at her carefully. she was beginning to get red bumps down her forehead and cheeks.

as i watched, they bloomed across her chest, shoulders, thighs, back...everywhere. i still wasn't panicked because they just looked like red flea bites or something... but i started dialing the after-hours allergy office number and grabbed my camera to document it for her allergy dr. i imagined trying to explain a fleeting, brief outbreak of little red bumps after the peanut butter sandwich and wanted to make sure i could show him exactly what was happening.

as i took pictures and put my number into the pager, the bumps swelled and merged and took on a yellowish, pressured looking outline and turned into hives. now i began to panic. i kept taking pictures, waiting for the dr. to call back. by the time he called just a few minutes later, the hives had elongated into welted lashes like she'd been whipped and i was wondering if i needed to run for the benadryl or the epi-pen first.

i kept asking her constantly, "how do you feel?" "how's your throat?" when i answered the phone and it was dr. b himself, i shocked myself by bursting into tears. i just had such a horrible, stifling guilt that i had done this to her. that i had fed her something i knew could kill her for the last 3 years just because she passed a couple of tests with the dr. my first instinct when he said she was over this allergy was to still keep it away from her, but i didn't listen to my instincts and fed it to her and now she might die.

i sobbed my fears into the phone and dr. b. snapped me into action by barking at me to get the benadryl and an epi-pen. i hadn't even showered yet, so i called don after dosing her, to come home and rush her to the ER while i showered and dressed and met them there. by the time they left, her stomach was cramping and she felt like vomiting. affecting more than one system is a sign of anaphylaxis. for her, the next step is the throat tickling gets a lot more intense and then the wheezing and blue lips come after vomiting. the benadryl wasn't touching the spreading welts and hives after 15 minutes, when don got home.

they gave her steroids and antihistamines in the hospital and she looked almost completely normal by the time i got there. she never made it to the vomiting point (the hospital is less than 10 minutes from our house). this is one of those times this natural-minded mama is absolutely in love with modern medical interventions!

dr. b. was just beside himself with concern and confusion on the phone. he kept saying, "it can't be the peanut butter, i'm thinking it must be something else, she was truly not allergic anymore!" and i said, "then i guess we made her allergic again, because it was all she'd eaten in the last couple of hours and the reaction started 5-15 minutes after." (her brothers were downstairs eating with her while i cleaned upstairs and said they noticed her mouth getting red immediately after finishing it).

he called again late that night to check on jovie and ask us to come in in the morning to see him. he told me again it couldn't be a reaction to peanuts as she'd had no reaction in his office. i thought about it and said, "but i thought the first time someone gets exposed to something they are going to be allergic to, they don't react? it's the sensitizing exposure and acts like a freebie, you don't know they're going to be allergic to it until the second time, isn't that right?" and he said, "yes, usually - but she didn't have a reaction until now, after 3 weeks of exposure, it doesn't make sense, i don't think it was the peanut butter. we'll talk about it more tomorrow and try to figure it out."

i thought about this conversation all the way in to his office the next morning on december 6, 2010. i had don print off the pictures of the reaction to take with me. as i was looking through them in the waiting room, it hit me. i was staring at the one of her face when the hives started around her forehead. at that mouth. that clownish rash all the way around her mouth.

i realized in a dismayed rush that the last two times she'd had it had not only been days that she might have used other toothpaste, *they'd been peanut butter days, too - sundays*. i hadn't put it together because the first time i was just so secure and safe because she'd just eaten some in her dr's office the tuesday before that sunday and had no reaction whatsoever and i'd given her the wrong toothpaste myself. and the second time, we were on vacation and i was frazzled and she probably used the wrong toothpaste again...and the tickly throat on the drive home, that was probably part of her reaction and not just the chlorine from the hotel pool, too.

it all clicked and i realized she really may have been over the allergy, but we resensitized her in his office and she had her first reaction the first time after that and i missed it. then she had another, with slight respiratory involvement, and i missed it again. and the third one was a big one.

when i told dr. b what i'd put together, i saw his face fall as he allowed, "then i think it does sound like she is allergic to peanuts again - i just don't know how this happened or why, i can't explain it, this is very rare, this never happens like this." he told us that now her peanut allergy could be much worse much more quickly and that she is almost certainly going to be dealing with it for the rest of her life, she won't get over it again.

i lamented to him that we never should have given her any peanuts, but he insisted firmly that it is absolutely the right thing to do, the recommended treatment to keep her from relapsing into life-threatening peanut allergy. i asked him, "then how come it didn't work? how come none of this stuff ever works like it should with my kids? why are they always the exception? what's wrong with my kids that the rules don't ever apply?" he had no answers.

i told him he should change his protocol for testing life-threatening allergic kids that appeared to have outgrown their allergies. he should do TWO food trials to be completely sure they don't react, if the first exposure is always the sensitizing one that doesn't cause reactions. seems like basic common sense to me.

we would have caught that first reaction to her second dose of peanut butter in his office. if the third dose and this reaction had proved fatal, it could have saved her life. i told him this fervently, like i thought a light would go on in his head and he'd say, "my god! you're right! we should always do two trials to be sure!" instead he said, "but this never happens. if a child goes through all those tests and isn't allergic, they don't become allergic again at the first exposure." so i guess changing a whole medical protocol for a practice for one quirky kid is silly. and i'm back at square one, trying to understand *why* my kid(s!) is/are so quirky and how to find my way in keeping them safe between the dr.s recommendations and my own instincts.

we retest her on january 18, 2011 to confirm the re-allergic status. we have to give her system a few weeks to calm down and reduce chances of a false positive. dr. b promised to handle any arrangements with the school if accommodations need to be made, he says he feels it's his responsibility. he's a great guy, i know this wasn't his fault and i almost feel badly for giving him two patients that confound all his learning and experience.

i asked him the question about not knowing which to trust when it comes to my kids anymore: my instincts or the dr.s. he gave me an interesting answer. he said, "you trust both."


Anonymous said...

I'm so sorry about the allergies your children suffer. I was an allergic asthma sufferer for years. Then after starting an extreme stressful job at the age of 28, I suddenly became covered in eczema. It was stress induced. Recently, at age 44, I have developed an allergy to peanut butter. I wish I could show pictures of my rash. It's even in my eyes. So, sometimes a person can grow into an allergy. I have owned, bred, and shown Dobermans for over 30 years. I am now allergic to them. I lost the last dog of my own lines last year. Gone forever. So many great dogs with beautiful temperaments gone. They went anywhere from Show and Tell at school to the nursing homes as Therapy Assistance Dogs. I feel lost without them.

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