a peanut allergy update

about a month ago, a 13 year old girl in california (named Natalie), died after taking a bite of a rice krispee treat that had a chocolate peanut butter drizzle on top.  three doses of epinephrine couldn't save her.  absolutely heartbreaking.  

she left behind a twin sister, a younger sister and a younger brother.  her father, a surgeon, and her mother with a medical background were there at the camp with Natalie and her siblings.  her parents followed the protocol exactly--benadryl, wait and see, administer epinephrine if symptoms worsen.  it wasn't enough.  she'd had one reaction to peanut butter, at age 3.  a simple rash.

the parents have been very vocal since the loss of young Natalie.  thanks to them, you are safer.  oh so much safer! 

............................

we took precautions but truth is, we'd grown too complacent.  yes, we'd created a peanut free environment for you, trained all of your loved ones on how to use an epi pen (incorrectly we later learned), and read labels over and over again (but still missed that bag of kettle chips from publix cooked in peanut oil).  we didn't allow foods manufactured with peanuts and we made sure restaurants didn't use peanut oil, but we didn't really grasp the severity of it all until we heard Natalie's story.

we learned we were doing things wrong, in spite of our best efforts.  a lot of things wrong actually.

we weren't administering the epi pen correctly (you are supposed to hold it in place for 5-10 seconds after the needle is engaged), we didn't keep the epi pen within the recommended temperature, we didn't carry both epi pens with us (we didn't know that that was why they came in a twin pack).  we knowingly went months with only a single expired epi pen in our possession.

the reality of leaving you in the care of someone else (Brandon Academy), in a non peanut free environment in the wake of the loss of Natalie Giorgi, made us worry.  i'm fairly certain daddy thought i was obsessing, but i felt so alone and helpless.  we didn't know anyone with a peanut allergy to talk about this stuff with.  we hadn't been forced to really deal with your allergy until that point.  but good thing we have facebook!  i posted some questions in a group aunt nelle added me to a while back.  i learned you needed an allergist.  i scrambled.  school would be starting in a few weeks and you HAD to be seen before then.  my first choice (based on qualifications and online reviews) had no openings.  neither did my second choice.  or third.  but there was an opening in the third choice's practice with another doctor.  

we went to see dr kalik on august 8th.  there was a lot of history taken and all of our questions answered.

dr kalik told us about a newer blood test for peanut allergies (uKnow) that he wanted us to do for you.  it tested for the four (or five proteins?) known to cause severe (anaphylactic) reactions upon ingestion.  he gave us a prescription for a numbing cream to put on your arms before the blood draw and two new epi pen twin packs (one for us to replace our one i'd left in the hot car on numerous occasions and one set for school). 

you had your blood work done on monday, august 12th.  we kept our fingers crossed that we'd know the results before you started school on the 19th.  you and mommy went for doughnuts after ward to celebrate how brave you were.  (we had a contamination scare--the lady behind the counter touched the peanut doughnut and then your glazed doughnut without changing her gloves.  english wasn't her first language and mommy failed at being the assertive woman she wants to be.  thank goodness nothing happened.)

 

now for a little trip down memory lane...

{07.27.11 - waiting to have your blood drawn}

{07.17.11 - two days before you tried and reacted to peanut butter}

{07.19.11 - in the ambulance}

i met with your teacher and the director of the junior kindergarten program at brandon academy on tuesday.  i told them about your reaction at 15 months, showed them how to use an epi pen and let them try with the demo and discussed precautions they'd taken in the past with students with food allergies.  i tried my best to not be the crazy mom, since we didn't have the blood tests back.  i think i succeeded.  i told them i'd inform them of the blood results as soon as possible.  (while meeting with the teachers, your teacher told me how last year, a student with a less severe peanut allergy went over to her desk and picked up a peanut butter cookie that was sitting on her desk with some chocolate chip cookies and took a bite before she could get to him.  mommy couldn't get that story out of her head!)

we got the call with the results of your blood work on thursday, the 15th, the night before orientation.  you tested positive for one of the proteins linked to anaphylaxis.  we were advised to continue a peanut and tree nut free diet and to administer the epi pen immediately if a known ingestion of peanuts occurred even if no symptoms were present and then call 911.  

daddy and i drafted an email to your teacher and the director mommy met with.  we asked for a peanut free classroom and explained the severity of your allergy.  i guess we scared them because we were told to see the principal at orientation.  i found the principal and was told she'd email me a time to meet on monday (your first day of school) to discuss the email.

to sum it all up.  they said no faculty members were trained to use an epi pen and thus wouldn't administer it if you needed it.  they said all students with epi pens on campus (locked in the teacher's lounge) were able to administer them to themselves.  they said they didn't feel that they could keep you safe.  mommy cried.  she felt like you were being kicked out for your food allergy.  they stopped the automatic payments but said that all monies paid up until that point would be kept for future enrollment (~$1500).

i spoke with the principal over the phone the next day.  it was a good conversation and i was hopeful that maybe we could work something out, but i don't know anymore.  i've spoken to A LOT of schools and we've toured some.  brandon academy is the ONLY school that doesn't have staff trained to administer epi pens.  i'm not gonna fight to send you to school.  i shouldn't have to.  you have a peanut allergy.  whoopty freakin' do.  we will find a place for you.  i'm sure of it.