Updates Spring Summer 2019- Peanut Graduation, Tree Nut Skin Test, Birthday Routine

A few updates for the blog.

May 29th 2019- Andi graduated from Dr. Kim's Peanut OIT by reaching her maintenance dose of 8 peanuts per day! She did not like the attention or the t-shirt.  I'm thinking they need a redesign with glitter and rainbows.

Sometime in June at a friend's birthday party i made the ultimate mistake of forgetting to pack a birthday cupcake and of course the two kinds of cake provided were not safe for her to consume.  It's the first time i forgot!! I had to distract her by going to play some arcade games while they served cake and letting her get some candy from a machine, and she seemed fine with it.  Mom fail!! (sorry my love!)

July 2nd 2019- Andi had her follow up appointment with Dr. Kim.  She continues on the maintenance dose for her peanut.  We did a skin test for all tree nuts and eggs to see where things stand.  Looks like her egg and egg yolk remain positive- about the same and Dr. Kim would like to challenge that one.  I remember Dr. Miranowski had said the same thing about challenging egg, so I'm ok doing that.  Her tree nut reactions kind of looked worse, and i think it was largely because the reactions of pistachio and cashew were so big causing so much redness.  The almond was bad enough that Dr. Kim did not want to challenge and wants to include it in the OIT.  The other two minimal reactions were hazelnut and walnut, we will challenge those first.  Pecan and brazil nut are negative and can be given at home. Our challenges are in August, September and October.  So getting on the OIT schedule for November is our earliest bet.  I will try to update how the challenges go.

Somewhere in here we had a couple times at day care where I approved items she COULD eat but it wasn't communicated properly so she was still left out.  In one occasion i approved a betty crocker cookie mix, which she could eat because the egg would be baked.  In another occasion I made sure to pre-approve the popcorn brand for their movie day and she was also left out.  They felt bad and said they would improve the communication in the future.  I just wanted to mention this because while I'm so happy there were no incidents, it's just a side effect of her situation and it's unfortunate.

July 8th or 9th- OMG and how could i forget, Andi's first field trip!! Can you possibly guess where they went???
COLD STOME CREAMERY.
So I had to do some investigation to find out which one they were going to and then call and ask what kinds of tree nuts they used.  I guess they have pistachio ice cream but it might not even be real pistachios.  Also they don't have pistachio and cashew as toppings.  The other stuff like PB and almond is serious too, but i was comfortable enough to let her attend and walk around the shop.  We packed her own little container of A LA MODE pink sprinkle!!! (AND a cupcake) and i think she was ok with it.
Lord have mercy, I had to roll my eyes big time at a field trip to one of the most concerning places we avoid.  Not one of the most allergy-aware choices.  We rolled with it and conquered.

July 14th 2019- Andi turned 5 and we took everyone to Chuck E. Cheese's for dinner and play.  She ate pizza around 5:30.  We didn't get home until almost 8pm and all had some cake.  We then gave her her peanut dose around 8:15 which is pretty late for us.  After chatting with my mom on the phone i noticed Andi was grumpy but figured it was because they were up SO LATE.  Then i noticed her lip looked a little swollen.  I momentarily freaked out and reassured myself my looking at her action plan.  "Significant" swelling of lips is a major symptom and requires epi pen.  I didn't think it was significant and there was no swelling inside her mouth.  I opted to call Dr. Kim.  After chatting with him, he said we may or may not give benadryl, but to sit her down with a snack.  He believes she did not have enough food in her stomach with the dose.  I was able to text him a picture of her lip as well.  About an hour later there was significant improvement enough that we sent her to bed.  I checked on her at midnight.  We chose not to do benadryl.  it was pretty scary, when you get out of your routine on holidays and birthdays you are susceptible to this. It also was a big reminder that she is still actually allergic to peanut, and our circumstances are very controlled surrounding her dosing.  Hopefully that will improve over time, but probably a couple years before we can reduce her dosing to a couple times a week.  In the photo below you can see her lip at 8:30pm (top) and 9:30pm (bottom) after resting/snacking.

In addition to gearing up for challenges, I am gearing up to have a discussion on implementing a 504 plan for KINDERGARTEN.  Here is the majorly awesome article on 504's- what they are and why they are important. It has been so helpful to me.
https://www.nutfreewok.com/504-plan/

I think I'm all caught up for now.  Getting on the lap top is hard, I may try to do shorter updates from my phone in the future.

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