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

Catching up pre-OIT

Warning... long post. A couple things i've been late to update on but wanted to get documented before we begin our OIT (Oral Immuno-Therapy) adventure.

March - May 2018
1. Sesame challenge scheduled! (march)
2. Almond reaction (4/15)
3. Discovered Dr. Kim (4/17)
4. Sesame challenge passed! (4/18)
6. Environmental panel (5/3)
5. Met with Dr. Kim (5/21)

1. The allergist called (sometime in March?) to say they have added a new doctor (https://www.fnapc.com/directory/people/show/david-anmuth/) to the practice and were able to move up a whole bunch of food challenges (so much for Feb 2019)- scheduled for April 18th 2018. A little confusion on what to actually bring for food to challenge with... more on that with #2 & 4 below.
But this is fantastic news!

2. Working up to the sesame challenge, Andi had still been getting over some wintry viruses with breathing treatments and low grade fevers. One of the days i decided i wanted to get her used to eating chocolate frosting (because i planned to mix chocolate frosting and chocolate tahini for the food challenge).  I put the chocolate frosting on teddy grahams and it was a hit (she's so picky about everything including chocolate).  So it dawned on me to mix in some barney butter for almond exposure-remember she had tested negative in October- with the chocolate for this treat.  I did just that.  After one teddy graham worth- she said her tongue felt funny! (YIKES!) and didn't eat the second one.  So fine, no splotches, no swelling- I'm watching her like a hawk ready to epi.  She stopped complaining and everything seemed fine.  Then a few minutes later she vomited... another sign, but no further symptoms and they were not overlapping.  Luckily nothing else happened and she was fine, although i was watching her intensely the rest of the day.  So it appears that almond was a false negative on the skin test... more on this with #6 below.

3. I was starting to explore the options of driving to Philadelphia every two weeks to get Andi started on OIT. It appeared from OIT101.org that this is the closest city (or VA beach).  I started searching the FB allergy groups for people that did the drive from NOVA to Philly to read about their experiences, time commitment, etc.   The day before the sesame challenge (4/17) someone sent me a private message to let me know there was a Dr in Chantilly VA (like a mile from where i work EVERYDAY) who is doing OIT. I was floored.  I immediately started investigating, and the same woman added me to a NOVA OIT FB group. Wow. I called right up the next day (after the sesame challenge) and scheduled our first visit.
Dr. Kim (not the same Dr. Kim from my UNC post) practices at Allergy Partners of Northern Virginia in Chantilly.
I feel like we had won the lottery able to get an appointment in just a few weeks!!

4. sesame challenge 4/18
We arrived to see Dr. Anmuth, all prepared with coloring books (adult coloring books for my stress levels) and an iPad with movies. I had called the office to clarify on what food to bring (the paper said sesame cracker but that made zero sense as a way to control exposure to sesame for a challenge).  They said some kind of tahini was fine.  So I found chocolate tahini on amazon and we went with that. chocolate tahini and chocolate frosting mixed on a teddy graham, small amounts measured and brought to us in a plastic spoon every 15 mins. Eventually we went straight choc tahini on a few graham crackers.  Andi ate ALL of it!!! Every 15 mins for like two hours. She had zero reaction, passed with flying colors. I was floored and amazed that my picky eater downed all that food!!!  she is cleared for sesame no restrictions. Dr. Anmuth was very nice. I mentioned the almond incident from a few days prior.  He thought avoiding until we could talk to Dr. Miranowski again/test again would be best. He mentioned that if her seasonal allergies were in high gear she could have a flare to almond due to that (and test negative other parts of the year) as one possible explanation.

5. 5/3 we saw dr. miranowski a few weeks later for environmental panels for Leni and Andi.
Leni- almost all negative (slight tree) except cats and dogs!!!
Andi- a few moderate tress, slight cat.  Threw egg, peanut and almond on there. Almond was positive this time, ugg.  She mentioned the egg went down a bit and she'd like to do a scrambled egg challenge in 6 months.  I mentioned we were starting OIT for peanut and we could do egg in a year if OIT for peanut went well, she agreed.

Check out Leni's welts for Cat and Dog (27 & 28)... advised to give benadryl if attending b-day parties and such with dogs present.  Leni did NOT enjoy the 30 skin pricks :/  I should have had brave Andi go first.

Poor little Andi with some environmental trees.  Clearly her Almond, Peanut and Egg across the top are visible.

6. We met Dr. Kim on 5/21.  I had prepared Andi's allergy medical history in an easy-to-read table, because that's the kind of person I am.  I knew what info he would want, and what we would need to discuss to see if she was a good candidate (I knew she was), and he agreed it was perfect and he had all the info he needed and was comfortable starting her in the program.  Her blood and skin tests were pretty recent and didn't need repeating currently.  Rich and I read over a few procedures, protocols and agreements.

Side note 1- Dr. Kim mentioned that he is not on OIT101.org yet because he wants to have a lot of success rates under his belt.  This is referred to "private practice OIT" or PPOIT for peanut.  The FB groups are quite weirdly strict on these "rules" around if your Dr is listed or not. He mentioned that he has had high success rates so far and was very optimistic.

Side note 2- Dr. Kim went to listen to Andi's lungs and i explained the poor thing is not very good and blowing out... he runs out and comes back with a PINWHEEL.  This man is a GENIUS. Of course she blew the pinwheel and he could listen to her lungs. AMAZED.  He earned our trust right there. why couldn't the pediatricians known this simple trick???

We decided to wait until July to start- finish up the school year and get into a new groove. July 11 is day 1 to get the base dose before bi-weekly visits for updosing.
I got approval to work from home 1 day per week to accommodate a flexible schedule to handle the appointments over the next year (for that I am so thankful).
We are reaching my goal of doing OIT prior to entering public school (yesssssss!!!)
We are about to embark on a stressful journey that will hopefully eliminate MUCH future stress and it will be well worth it.

I think that's it for now.  I hope to do a blog for day 1 of OIT and then updates through all of those phases.  She should be eating 8 peanuts per day by this time next year!!

Clinical Trial Research

If I didn't advocate for my own kid, who would?  I would go to the ends of the earth to do something to help my daughter.  I would drive her to a clinical trial as needed to get her treatment to desensitize her allergy.  I am hopeful for the peanut patch to get FDA approved so that our local allergist can prescribe it.  Here is a story about some of my latest research on this effort:

SO! A friend of mine saw a flier in her allergy office about peanut patch trials and sent it my way (THANK YOU Dawn!)

So I did some googling, and eventually figure out i need to look at www.clinicaltrials.gov.  I find the EPITOPE study.  If you have some time, look around that website a bit, it's interesting.

https://clinicaltrials.gov/ct2/show/NCT03211247?recrs=abdf&cond=Peanut+Allergy&cntry=US&age_v=3&rank=6

It (initially) showed only three places doing the EPITOPE study, with study leads and their contact info.

Mount Sinai Medical Center, NY

Arkansas Childrens, AK

UNC, Chapel Hill, NC

The Mt. Sinai location matches up with my google search on Jaffe Food Allergy Institute from the flier. 

I decide to email the three doctors.  I get Dr. Kim from UNC Chapel Hill to answer a few questions for me.  I ask about other locations closer to DC possibly doing this study.  He reached out to DBV Technologies (the company doing Viaskin Peanut Patch) and realized there was actually 7 places involved with the study and they were surprised to actually see only 3 listed on the clinical trial site.  (so I just checked and it now lists the 7 places... YAY for me pointing out an error on a gov website).  John Hopkins should be involved and he puts me in touch with the clinical trial manager.  

JHU writes me back and asks for my daughters name, birthday, address, list of allergies we avoid.  They let me know that for any future trials they send a letter to the families on the list who qualify.  After that they conduct a lottery (because there is so much interest).  ANYWAYS, because of my due diligence, and the helpfulness of a Dr at UNC that answers emails, I have Andi on a clinical trial list at JHU.  

Dr. Wood is the Director of Pediatric Allergy and Immunology at JHU.  A friend of a friend saw him and said he was wonderful.  He also wrote Food Allergies for Dummies.

I'm hopeful that my efforts can make a difference for her.  I'd really like to get her the peanut patch or in an OIT trail before she enters the school system. 

THEN just yesterday i see this news: 

http://mentalfloss.com/article/531530/new-peanut-allergy-patch-could-be-coming-pharmacies-year

and

https://www.bloomberg.com/news/articles/2018-02-14/peanut-allergy-patch-will-get-fda-review-despite-failed-trial

She will be 4 in July, and the patch looks like it will available later this year for ages 4-11.  

When i asked about treatments like this, our Dr said she will only do something FDA approved.  Other doctors doing OIT are doing non-FDA approved treatments and closest ones to us would be Philadelphia or Virginia Beach... possibly too far to do Dr. appointments.  So I think our best bet is the patch later this year, or getting into some type of trial.

ALSO: Shout out to Judi who reminded me to check out ROTTEN on Netflix.  Episode 2 is called "The Peanut Problem".  While it leaves out a lot of things, it's an excellent look at the food allergy epidemic and how scary it can be.  It's definitely worth checking out.

Sour Grapes! (cross contamination)

Back on 1/26/18 Andi had a minor reaction to eating grapes, and we have narrowed down to a probable cross contamination.

She was eating her grapes first, as she usually eat her fruit first at dinner.  She complained to me that her throat hurt, so i had her take a break eating.  Later i urged her to eat her pizza but she didn't really want it, so i told her to at least finish her grapes.  She proceeded to eat more of them, gag, and vomit.  She had very flushed/pink cheeks but was otherwise acting fine, no hives.

I realized that a few nights earlier she had woken up gagging (i thought she was going to vomit) but I was able to get her some water and back to bed.  I think she had been eating the grapes.  Thank goodness we never put any in her lunch that week.  I called the grocery store to find out if there were any bags of peanuts anywhere near grapes in the produce section ( we order our groceries and curb side pick up).  They said no, but could not guarantee, because items come shipped together all jumbled up in one big truck.

I figure because grapes have a very "open" type of bag, and people can reach their hands in directly on the produce to make the bags different weights, etc. we were looking at possible cross contamination.  We quit grapes for a week or so.  I figured a grape allergy was highly unlikely because she'd been having grapes her whole life.  I got purple grapes next and we tried those with no problems, and eventually re introduced green grapes as well.

Annual Visit ... Continued

So a bit of good news from the blood draw.
Anything less than 0.2 is negligible, so almond and sesame are very low.
We heard back from the nurse at the allergist office... she said our Dr would like us to try almond at home (based on our history and previous discussions) and they would like to do an in-office challenge for sesame.

First the peanut looks slightly worse, and egg looks around the same.  Unfortunately the peanut is still very serious.  The "class" doesn't really describe the severity of the allergy, but the likelihood of an anaphylactic reaction.

Almond at home... I purchased Nuttzo butter which has like 7 different nuts and seeds in the butter including almond. They have another kind with peanut but it's made in a separate facility.  I have so far snuck the butter under some cream cheese on her bagel.. she didn't really like it. She's so picky she even hates nut butter substitutes that i have tried in the past.  I have also snuck Nuttzo into a strawberry banana smoothie.  So far so good (I secretly want to say YAY but want to wait a bit longer to make sure we have continued success). We will do it early in the morning on a weekend when we have no immediate plans.. so that we can monitor.  I hope it continues to go well and we can reintroduce tree nuts in our home.  Although Andi will still only be allowed to have nuts that were not processed in a facility with peanuts, which is pretty limiting still.

Sesame challenge... the appointment list is FIFTEEN months out. That's right, our appointment is in Feb 2019.  With the knowledge that appointments get canceled all the time and there is a waitlist and we will likely be seen at some point this year.  A "challenge" is when the allergist monitors your consumption of the allergen in the office in case there is a reaction.  They will recommend this when your skin and blood testing shows close to negligible.  Her sesame still had a hive this time while the almond did not.  I'm hoping we can eliminate sesame, it will open the possibility of more breads and stuff like that, although again still items that are not from a facility with peanut.

Tough luck on growing out of the unbaked egg and peanut so far.  Hanging in there.

We have also been going through some challenges with Andi and PFAPA syndrome.  That is for a whole different type of blog.  It's an auto inflammatory condition that is causing her to have high fevers that are cyclical (ours are every 3-4 weeks).  We just had our 7th fever in 6 months.  Luckily those tonsils and adenoids are coming out in December.  *send all the good vibes*

Here is the blood work, nearly 2 years apart, for comparison:

        

New challenge: Exposing Reyna to peanut and egg in the house. Not mentally there yet.