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."

Food Allergy Vacation Spot !

this thanksgiving, we decided we wanted to take an affordable staycation somewhere in michigan. it would be the first time we were looking to stay in actual hotel accommodations with our multiple severe food allergy guy, 'lou - who just turned 3 and is test-confirmed as well as food trial-confirmed allergic to: corn, dairy, egg, soy, wheat, peanut, tree nuts, seafood, lentils, beans (white, kidney, navy, lima, pinto) and sesame. and that's with all the false positives from last june's huge reaction ruled out and tested back in !

however, the bright side was we were not going to have to worry about our almost 5 year old daughter as much now. she used to have anaphylactic-reactive allergy to peanuts but had just been pronounced "cured" by her allergist after a skin test, a blood test and a food trial in his office confirmed it.

we gave her her 1st dose of peanut butter at home, on sunday, november 21, 2010. we were planning to do it every sunday, so there'd be no confusion or over-dosing - we weren't taking any chances! i specifically remember her frist peanut butter at home, because i wanted to take a picture of her holding the jar of organic peanut butter to put on facebook with our happy update about her first eating of peanut butter in the house again, but i'd used a new toothpaste on her that day and she had a big red rash all around her mouth and looked like a clown, so i never took the picture.

we decided on great wolf lodge in traverse city, michigan for our weekend-after-thanksgiving trip with our close friends (and neighbors). i don't know if i was more excited or nervous. i had no idea how i was going to feed 'lou and myself away from home for a whole weekend. i decided to contact the chef there on the very small chance he could make some of our allergy food in his kitchen and enable us to eat in a restaurant like normal people for a change.

i was called back by executive chef greg nicolaou and couldn't believe my ears. he was willing to make 3 meals a day for the entire weekend for our needs and to our specifications. which included doing all the shopping for our very hard-to-find (corn-free especially!) items! i was sure the more i told him about our restrictions and the extent you have to go to to avoid corn, that he would back down from his offer. he never did, and in fact went out and bought items he'd found on his own that he thought we might enjoy!! in all my years as a food-allergy parent, i've never ever come across an establishment or person so accommodating and concerned about our needs.

as it worked out, we didn't end up needing (which is my genteel way of saying we couldn't actually afford) to eat every single meal for a family of 7 in the hotel's restaurant - we brough a lot of snack items and i made a big batch of stew to bring along for 'lou and i to eat in the room (with kitchenette), as well. but the meals they *did* prepare for us were phenomenal.

chef tom made our quesadillas and 'lou proclaimed them better than mine! chef greg made our pancakes and seated us in a private dining area and they were the best allergy-friendly pancakes i've ever had! we were charged prices comparable to similar items on the menu and i brought my own ingredients for much of it to save on paying more for those. my leftover ingredients were returned to me, professionally wrapped and carefully saved.

one night i even decided to let my hair down and see if they could make my margarita from scratch. food and beverage manager valerie micham was there every time we came to the restaurant and was completely accommodating and understanding. she made me 2 margaritas and i don't know if they tasted better because i was on vacation or because someone else made them for a change!

i can't recommend great wolf lodge in traverse city highly enough to any of my michigan allergy friends. of course, it's great for anybody, but food allergy families especially know how hard it is to go out to eat and how terrifiying it is to trust someone else to handle and feed your child something that could potentially make them very ill or even kill them.

after speaking with greg several times before we even arrived at great wolf lodge and then seeing how carefully he'd relayed all instructions and concerns to his very capable staff, i knoew i could let my worries go for the weekend and truly relax. this was the 1st and only time i've been able to do so since having this allergy baby and not staying with friends and/or family and it is one of my most cherished family vacation memories already!

the rest of the vacation went off without a hitch, with the exception of two things: on the way there, everyone voted to stop at a denny's to eat. of course i had brought along food for 'lou and i, but i had to call ahead to every place we considered and ask if they'd warm it up for us. some places will, some places won't. they say it's a health hazard to let anyone else bring in their own food. sometimes if you keep it in your own container, they can microwave it, but the food itself can't touch their griddles or pots and pans. denny's was okay with microwaving my glass dish of stew. (we call it sloppy 'lou stew, like sloppy joes).

as he sat at the table, waiting, he began itching and scratching, it got more and more frantic. soon he got red and splotchy and hives began to form down his forehead and cheeks. he was scratching ceaselessly and literally couldn't sit still. i realized it must be his egg allergy. the place was positively sticky w/ them, they were being served all around us.

i should have wiped down every surface near him, but we hadn't eaten out in so long, it just didn't occur to me. plus i hate looking neurotic and really hadn't known him to break out in hives just from touching them, it previously only happened when he ate them and he got exposed through my milk. (he tested allergic long before he ever got to eat them on his own - he's never had them.) we left as quickly as we could and he was completely cleared up in 20 minutes! you can imagine how concerned i was that we were about to be spending a whole weekend of this and how relieved and overjoyed i was to end up having a completely opposite experience.

the second thing was really minor. i was so proud of myself for remembering to bring jovie's peanut butter so she could have it on sunday before we drove home and i wouldn't disrupt her peanut schedule, but i forgot her toothpaste. after using the hotel's brand, she once again had that clownish red rash all around her mouth for the rest of the day.

our only other single complaint about the place would be the time of year we went. we were stuck inside the whole time and mainly let the kids play in the water park. the chlorine was so incredibly strong, it left you with a sore throat, sensitive skin and some of the kids with a dry cough. there were also a lot of sick kids there this time of year and the water area was shut down twice for barfing incidents. the only one of my kids to be bothered with the cough seemed to be jovie, who kept saying her throat tickled on the long drive home, but it cleared up by the time we got back to our own house.

all in all, a fabulous staycation and one we hope to turn into a tradition!

Jovie's "Cured" Anaphylactic Peanut Allergy

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!