Sunday, March 10, 2019

Pistachio/Cashew

So, just the week before reaching 1 whole peanut in her OIT, we had our first epi+911 experience.  I really credit the "No nuts mom group support and forum- all allergies welcome" FB group because you are reading pretty much daily about reactions and the swift actions parents take with epi pens and saving their little ones.  It really keeps the process in the front of your mind, and it works.  So the big take away is "Epi first, Epi fast" and I agree with that mantra.

So on Jan 20th, a Sunday night, we are just eating dinner and the girls were eyeing the bag of pistachios that had been sitting on our counter since Christmas.  They were Wonderful pistachios which i know are a peanut free facility and i believe separate lines from almond. So i encouraged Rich to hand them around. He questioned, "When is the last time we had Andi's blood tested for tree nuts?" and I said, "We are supposed to expose her to the other nuts she's not allergic to."  So very shortly after eating 1 pistachio, she vomited.  It seemed like it wasn't just a coincidence, we knew it was a reaction.   We got her sitting back down and she just kept acting like her mouth felt funny.  I was trying to look around in there, and the color was fine, but her tongue looked bigger.  When she started vomiting again, i told Rich yes, get the epi pen.  So he got it out, and I called 911, told them i was administering epi, and did it, and they had an ambulance on the way.

Immediately, she stopped vomiting and i could tell her mouth was no longer swollen.  She did start shaking due to the epinephrine in her body.  The paramedics arrived and checked her out.  She was breathing fine so they were not in a big rush.  They offered that i could drive her to the ER but i wasn't comfortable with that because we would need an adult with her, watching for a secondary reaction, and Rich needed to watch the other girls. So Andi and I took the ambulance ride.  They took us to the Cornwall INOVA loudoun, instead of lansdowne.  It's not the kid ER, but they did give her a brand new doll.  The ER staff monitored her for less than two hours and let us go home after a dose/prescription of steroid.  I did call Dr. Kim while at the ER to make sure he was good with that plan.

Toward the end of our ER visit, Andi looked at me and said "Mommy I just love you so much".  Really? After I stabbed her with an Epi Pen, and after this ordeal?  What a sweet soul.  She's so brave!!

Katie was able to come watch the other girls while Rich ran over to the ER to pick us up. And everything was fine.  It did not affect her peanut OIT at all except missing the one dose that night.

Overall, we handled it beautifully.  It would have been nice if the paramedics and ER staff had confirmed we 100% did the right thing.  But they also didn't say I over reacted.  None of them seemed familiar with allergy reactions and the protocol of administering epinephrine and going to the ER for monitoring.  It was their body language and a few things they said.  Knowing the plan and sticking to it, i know that we did do 100% the right thing.

We confirmed pistachio/cashew allergy with bloodwork the following week.  Pistachio and Cashew are typically "cross-reactive" due to similar proteins.  (Same for walnut/peacan).  Her walnut came up just ever so slightly positive, so I definitely want to challenge those ones in the office before starting tree nut OIT.  Definitely anaphylactic to pistachio and cashew and need to avoid for potential cross contamination like we were doing with peanut.  Looks like we will need to do tree nut OIT in the future.  I think we will finish peanut OIT and then do bloodwork again to see how numbers are trending.

So after the blood work  results came back i made myself a spreadsheet with her whole history so I could track every skin prick test, blood draw, and reaction in one spot.  (it's the nerd in me).  A full engineering analysis ;)  It looks like her egg and almond went up a little too.  Peanut was not in this test this time.

So her current allergens remain peanut (still anaphylactic but protected thanks to OIT), egg (baked egg ok), Tree Nuts (almond, pistachio, cashew).  A little disappointing, but we are thrilled with the OIT progress so far.  It's a marathon for sure.

OIT update

Wow, I'm so lazy i can't believe I haven't posted since just before we started OIT in July.  In summary, it is going wonderfully.  Since July we have been doing to Dr. Kim's office every 2 weeks to updose.  We discovered a new allergen a few weeks ago that I will post about next.

Dr. Kim and staff are so great.  On our initial updose day, we didn't make it all the way to "solution C".  The 1st part of OIT is small amounts of peanut suspended in Kool-Aid.  We ended up going home on solution B and taking a couple extra weeks to get to the initial starting dose.  This was due to her having some symptoms of itchy mouth/sore throat on the initial day.  The first few doses at home were intense, but went ok.  We quickly learned that we needed to give her a sip of juice box and an apple sauce pouch immediately following the dose, and we've been doing that religiously ever since.

She completed the kool-aid doses in Nov (5 months in) and moved up to powder! Then, in Feb (8 months in), moved up to one whole peanut!!  Just this week she updosed to two whole peanuts (we missed one week due to a snow storm).  She is on schedule to get to the maintenance dose of 8 peanuts per day by the end of May.

She was super skeptical of the whole peanut initially, a new texture, but is now doing wonderfully with them!  Dr. Kim said that once we get to 4g (4 peanuts) we can talk about substitution options (PB, etc.).  Not sure how that will go, I can't imagine her eating 8 whole peanuts every night.  Maybe we can do peanut M&Ms!!

Here she is on her 1 whole peanut day!!  So I'm so excited for her to be a little extra protected starting kindergarten this fall.  Just when i thought we were protected from cross contamination we discovered a new tree nut allergy.  Andi saw a little boy graduate (reaching maintenance dose) from Dr. Kim's a few weeks ago and she is super excited for the appointments and eventually getting to graduation!!


2/6/19