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.

Annual Allergy Check-Up

Today was a our annual visit to our allergist.  We went this month so that i could get Reyna checked out before we start solids.  It also works as a good time to get Andi the flu shot, which she has to do at the allergist because of the egg allergy.

So Reyna checked out well! So far negative skin prick to peanut, almond, sesame & egg.  We will start giving her food soon and the allergist wants us to make sure she gets eggs and peanut exposure which will be tricky to do in our peanut-free house!  going to have to make a little zone for her and do it right before bath or something!!

For Andi I asked about other tree nuts as well, because i want to start getting some tree nuts that are safe for her to eat.  Luckily she was still negative to cashew, hazelnut, pecan, pistachio, walnut.  The GOOD NEWS is that the almond was negative! The sesame was also "smaller" this time!  Egg was about the same and peanut was actually a bit worse, which is sad.

Here are the measurements from last year and this year:
(one is the size of the hive and one is the size of the overall redness)

 

So since we had good news with the almond the Dr suggested a blood draw to test her IgE levels to see what comes back on the almond, and I guess if it comes back ok we might do a food challenge.  Being able to eat tree nuts would help somewhat, although shared facility for peanuts is the biggest challenge.  

Since it's my only day off with Andi for the foreseeable future, I took her right over to the lab for a pediatric blood draw.  The guy was definitely on the B team. Not good. in fact she's never had such a horrible blood draw. he tried twice and i wanted to punch him in the face so bad.  another guy came in and got it.  she was a slight bit dehydrated but still. 

so skin pricks, flu shot and blood draw... I got her an ice-cream from Chick Fil A... she earned it!! She was one exhausted kid and I am one exhausted momma!

Emergency Action Plan

So what food allergy reaction symptoms should you look for?  and if something happens, what do we do?  Well, we keep our EpiPen in a special thermal bag inside the diaper bag, it's easy to find.  We also keep expired back up pens on top of the refrigerator.

This handy guide provided by FARE (Food Allergy Research & Education) is what we follow:

https://www.foodallergy.org/file/emergency-care-plan.pdf

I couldn't get an image of a .pdf to show up in my blog, so you'll have to click the link to see it.

It says for ONE MILD symptom, you can monitor and do an antihistamine (like Zyrtec)
For ONE OR MORE SEVERE symptom or MORE THAN ONE MILD symptom, give epinephrine and call 911.

Mild Symptoms:

NOSE
Itchy or runny nose, sneezing

MOUTH
Itchy mouth

SKIN
A few hives, mild itch

GUT
Mild nausea or discomfort 

Severe Symptoms:

LUNG
Shortness of breath, wheezing, repetitive cough
SKIN
Many hives over body, widespread redness

HEART
Pale or bluish skin, faintness, weak pulse, dizziness
GUT
Repetitive vomiting, severe diarrhea

THROAT
Tight or hoarse throat, trouble breathing or swallowing
OTHER
Feeling something bad is about to happen, anxiety, confusion

MOUTH
Significant swelling of the tongue or lips
OR A
COMBINATION
of symptoms from different body areas. 

Why call 911?  Need to make sure the epinephrine is working for the reaction and that secondary reactions can be treated quickly (i.e. biphasic reactions).  Also, heart rates need to be monitored after epinephrine is given.

Sometimes we get the question, "So have you ever had to use the EpiPen?".  Thankfully we have not (although we should have during her initial encounter with peanut).  Not having used the EpiPen does not make her allergies less severe. It's a life threatening medical condition and thank God we have not had another reaction that has required it.

How does this affect us?  We are always in that mode of "ready to act".  I'm always on edge during mealtime (especially if we are not at home).  While the kids are eating, I'm always glancing over at them to make sure they look okay.  The tiniest little skin irritation or red spot is hyper analyzed to make sure it's not a reaction.
Or at the playground, for example, I wonder if another kid has recently been eating peanut butter crackers and has now touched all the playground equipment. What if Andi touches that and then rubs her eye or licks her fingers? You just never know.  That is the type of thing we are required to think about constantly.

Thanks for reading, let me know if you have any questions about our emergency action plan.

A history

It has become apparent to me that I need an easier way to document/share Andi's food allergy history and management with family members and caregivers.  Sometimes when learning about food allergies it's hard to understand/believe when you haven't seen everything first hand, so I wanted to document her reactions, doctor's appointments, check ups, and protocols here.

This is a journey.  I hope it ends with Andi growing out of her food allergies.  Or maybe we will get to do a peanut patch or even oral immunotherapy (OIT) which has been having great success.  I'm sure things will get even more fun when she "can't have that" and enters the school system in two years.

I will probably share this blog eventually, because I know so many other parents are going through the same thing.  Sometimes my Facebook support group is the only thing keeping me sane, otherwise the anxiety of managing allergies can be overwhelming.  1 in 13 kids now has a food allergy.  Older generations are not used to the sensitivities and precautions for keeping people with food allergies safe.  Every time I ask for accommodations from family, friends and restaurants I hope I am educating one extra person... it can save lives.  (same thing with car seats, but that's a different hot topic!)

Summary list of significant dates/ages/event so far: (time just FLIES by)

2015/05/25- 10 months old - Scrambled Egg

2015/07/09- 11 months old- First allergist appointment

2015/12/05- 17 months old- Peanut butter

2016/01/07- 1 year old - blood test results

2016/06/02- 1 year old- Allergist check up

2016/08/06- 2 years old- Hummus (sesame)

2016/08/09 - 2 years old- Allergist follow up

2016/08/13- 2 years old- Almond

2016/12/08- 2 years old- Allergist check up

2017/12/x- 3 years old- next expected allergist check up


Description and pictures for each event:

2015/05/25- 10 months old - Scrambled Egg
Out to breakfast at Leesburg diner.  Suspected first time ingestion of scrambled eggs.  I had given her eggs previously but she always swatted them off the table. Our first indication of a picky eater!  She started rubbing her face and crying so Rich brought her out to get fresh air. When we paid the bill and walked outside it was apparent she was having a reaction.  I had only ordered her plain scrambled egg.  It was a holiday so everything was closed. We monitored her for swelling and breathing issues (none) and her hives (face only) subsided within about 2 hours.  We did a pediatrician appointment and got a referral and i did some research on local allergists and booked an appointment.

2015/07/09- 11 months old- First allergist appointment
Doctor asked what she had/hadn't been exposed to yet and tested for nuts and fish/shellfish because i was uncertain.  But I know she had no problems with milk, wheat and baked egg.  She encouraged us to give food with baked egg daily to help her outgrow the egg allergy.  Milk and egg allergies have a high % kids who outgrow.  Doc gave a prick/scratch test (doesn't hurt) with positive histamine (+), control (-), a handful of different nuts, egg, fish and shellfish.  Surprisingly (now) her nut pricks were negative at this time. Egg was the only positive.  Things we are not allowed to give her now include anything with undercooked or stove top cooked egg (scrambled, pancakes) as well as the need to check sauces and dressings (like mayo, ranch, etc.).  She can have baked egg like in processed foods or baked goods cooked at 350 for 15-30 mins. (High temperatures break down proteins in milk and egg only.  Some people can handle milk and egg allergies baked and some cannot).  Allergist seemed to imply a connection with egg allergy to nut allergies when she urged us to expose Andi to nuts as much as possible (my picky eater wasn't having it).  Seemed stressful but manageable.  I started joining some Facebook community groups for parents of food allergic children.

As I had been learning there are 8 top allergies that need to be labeled for on food product in the US. These include dairy, egg, wheat, soy, peanut, treenuts, fish, shellfish.  Manufactures are not required to label for shared processing equipment or facilities.

2015/12/05- 17 months old- Peanut butter
Running short on time for breakfast, I fed the girls a piece of bread with peanut butter for breakfast.  I folded the bread in half, hoping Andi would eat it without seeing the peanut butter (she never wanted it. I have no idea if she had ever ingested any in my past attempts to expose her).  She had eaten 1 or 2 bites from the sandwich. I was about to run out the door for a running clinic at the triathlon club and Rich and I noticed her lip looked swollen.

Remembering her mild reaction to egg, we reached for the benadryl and gave her a dose. We assumed it would be similar to her egg reaction.  She was negative to peanut before so we were really confused as to why it was happening.  We had an EpiPen but since her swelling went down we didn't use it.  Plus we were still rather uneducated and probably scared.  [knowing what we know now, this incident would have called for use of the EpiPen immediately and a call to 911].  I told rich to call me if anything changed and I ran out the door for my hour class (stupid me).  He called me after an hour and said she had all these weird symptoms and seemed to be not getting better.

When i came home she had been itching inside her ears so much they were scratched/bleeding.  It was like an instant cold. Watery, itchy eyes, sneezing, coughing. Wasn't sitting right, so I ran her over to the ER.  [in addition to the swelling, the following symptoms were a multiple system reaction and required the use of EpiPen, which we didn't realize at the time- did you know a lot of devastating stories end like this?].
ER agreed it looked like a food allergy reaction and wanted to give more benadryl. OK.
So as were were sitting there being monitored (hours after initial ingestion of the peanut butter), she had a biphasic reaction, first her ears turned bright red and a few mins later I noticed she broke out in hives all over her body.
Thankfully she did not swell again/have breathing issues (probably being masked by the Benadryl).
ER required to give her steroids to recover.

Left ER avoiding ALL NUTS until we could be seen by her allergist.  This was very close to a trip to NH for the holidays. Explaining this to everyone was exhausting, but still rather a new concept to both us an everyone else.

2016/01/07- 1 year old - blood test results
Before we saw the allergist we went in for a blood draw (not fun for my baby). We met with her to discuss the results.

What she told me confirmed what i had read online.  That blood results showing the "classification" are practically meaningless and there are no real ways to classify the severity of the allergy.  But the specific reaction to the "IgE Ara h 2"meant that she was at a VERY HIGH RISK of ANAPHYLACTIC reaction to peanut.  I will probably post at another time about the different blood testing for nuts.  There is about a 20% chance for outgrowing peanut allergies at some point.
Also note that her almond blood test was "equivocal/low" meaning the allergist thought it was nothing.
Encouraged exposure to other nuts as long as there was no risk for CROSS CONTAMINATION with peanuts.
No shared facilities or shared lines for peanuts.
That means reading labels and looking for the "May contain" or "Made in a facility with" statements.
If those statements are not on there, they are not required to disclose, so you need to call/research.

New things that are a NO for Andi:
Avoid all asian food/restaurants.
Avoid ice cream parlors (ice cream facilities share lines AND the parlors use a lot of nut toppings AND the dippers are constantly going in and out of different flavors).
Avoid bakeries- tons of shared equipment.  (No birthday cakes from grocery stores).
Obviously watch all candy, etc.
When eating out ask about product ingredients as well as risk for cross contamination in kitchens.

I later read that egg and peanut allergies typically go hand-in-hand for some reason.  Hoping not to add anymore to the list because i've been reading about families that have one or more kids with multiple severe allergies.  Not sure how i would eliminate dairy, wheat, soy and even meat and other obscure allergies.  At least her school was egg and nut free.


2016/06/02- 1 year old- Allergist check up
Routine 6 month check up. Andi hates vegetables and onto of allergies I was starting to worry about her pickiness of foods and thought that her avoiding things meant she was somehow allergic to it.  So they pricked her for broccoli because the girl will not touch it.  Negative :)
Peanut and egg were still significant.  Reco see her again in 6 months.

2016/08/06- 2 years old- Hummus (sesame)
So. We went to CAVA in Ashburn.  It's like Chipotle but Mediterranean instead of Mexican.  She had chicken and falafel and pitas with hummus on her plate.  She was being picky (surprise).  After the meal we went to target and noticed that she had some slight blotchiness on her face.  I suspected she had touched the hummus and then touched her face. I called CAVA to confirm they do not have any risk of cross contact with eggs or nuts.  I went online to look at all of their ingredients and made a complete list of what was on her plate and in her food. I made an appointment with the allergist.

This was a contact reaction, not an ingestion reaction.  No idea how sensitive she is if ingested.  Can't even really tell in the picture but her left eye is a bit red and there is some slight red splotchiness going on.

2016/08/09 - 2 years old- Allergist follow up
Doc agreed likely hummus and either chick pea or sesame.  Ground sesame is "tahini" and is a main ingredient in hummus and a lot of Mediterranean/ Middle Eastern food. They actually didn't have a prick test for chick pea but they did have one for sesame, so figured it was worth a shot, and it was positive.  Good to confirm but SO frustrating to add to our list.

1. Positive histamine, 2. control, 3. sesame

I also mentioned to the doctor that i suspected an almond allergy.  I had accidentally splashed her cereal with almond milk (what I use) instead of the 2% and she had some ever so light splotches on her face.  I had previously put almond flour in her muffins with no incident. The allergist said our blood test was negative and to go ahead and try exposure to almond again.

2016/08/13- 2 years old- Almond
So I took that advice and gave her cereal with almond milk.  This reaction wasn't anaphylactic but different symptoms and spread out: Minor blotchiness on her face that subsided within like 20 mins.  Later ate a fruit squeezy pack and then threw up (I think) and she was super grumpy for the rest of the day and I think even had a loose stool.  These were all very different reactions from egg and peanut, thankfully not as severe as peanut.

So we decided to avoid almond until her check up in december to confirm.  I had no rush since we were already avoiding peanut and her school was nut-free.

2016/12/08- 2 years old- Allergist check up
So the last time we saw the doctor for the 6 month check we pricked for Almond (confirmed), Peanut, Sesame and Egg.  None seem to have "improved" or subsided. I think the egg was just ever so slightly smaller.  The peanut hive was on her back for days.

So this is Andi's allergy history thus far, learning things daily. It's a struggle and stress to educate others but we are just trying to keep her safe at all costs.

We JUST returned from Andi's (& Reyna's) first airplane flight.  We were able to medical pre-board in order to wipe down her seats.  In addition to people snacking on nuts when flying, Southwest still serves peanuts on their flights, but were very accommodating for us and didn't serve nuts with an allergy on board.  I will have another blog post about my experience with that and dealing with allergies while traveling.  Coming soon.

Ideas for future posts:

Updates on reactions/appointments

Links to educational material

Food Allergy Action Plan (types of reactions, when to use the EpiPen)

Peanut proteins, blood tests, etc. and related information

What she CAN have/safe snacks

Traveling with food allergies

Holidays with food allergies

THANKS FOR READING AND HELPING TO KEEP OUR DAUGHTER SAFE!