No Great Pumpkin This Year, Charlie Brown

A few weeks ago we went into our allergist for a routine visit. Routine. Did you catch that?

It may not have a lot of significance to the everyday person, but routine means that we made it months without a major issue, without a major reaction, Epi incident, or new food failure. We made it through the entire summer without seeing a medical professional about anything allergy related.  It was a great new normal.

Heading into Fall, the season when all things pumpkin start getting thrown in our faces, I asked for a skin test for pumpkin.  Last Fall Monk reacted to eating pumpkin. He was never tested for it, but it was put on his list of allergies and we were told to avoid it.  Since our family hosts a pumpkin carving party each year I thought it might be good to find out for sure before 50+ screaming children go flinging pumpkin guts around my house and yard.

His skin testing was negative.

See that small insignificant dot in the bottom right corner amidst all the crazy big hives? That is the pumpkin.With instructions to try it at home, we reveled in being able to remove something from the list and enjoy the pumpkiny-ness of the season.

It seemed like all things pumpkin were showing up earlier this year, as if the finale to the 4th of July fireworks signaled all green leaves to suddenly shift in preparation for cinnamon and nutmeg production.  But no worries, because this was one food we could handle!

With our first taste of the pumpkin being successful, I found myself clearing the isles of pumpkin baby food pouches, so excited to be able to buy more than our standard 4 varieties.   

Typically we use food pouches for when we are out and about or following a minor reaction when Monk's appetite is waning. Since school is back in full force, our evenings are a bit hurried, so when Monk was still hungry after his dinner, I grabbed a pouch and handed it over.  Within a few minutes he started crying and threw the pouch, half eaten, onto the floor. I picked it up, he threw it down.

Then the real action began with coughing and vomiting.  Two systems engaged, but I still picked up the phone and called our allergist.  As I described the reaction, I saw the hives pop up.  Epi-time. After we gave him the shot we loaded the whole family into the car (Road trip!) and drove to the ER just down the street, checking in with the allergist on the road.

I feel a bit like we are ER champs these days.  I know the drill and almost answer questions before they are asked. I know the course of treatment and what medications to expect.  I am calm and cool under the pressure and pretty much the opposite of what friends and family see on a regular stressful day.

While I might be the one you can call to hurdle you through the inner workings of our Hospital ER system, there are some things that don't change and don't get easier.  I still take a deep breath and hold it as I have to plunge the Epi Pen into my child's thigh. I still feel the same aching pain in my chest when nurses hold him down to start and IV or when I have to hold the nebulizer to his face as he screams through another breathing treatment.  These are certainly some of the worst moments.

This time was not so bad.  After getting IV medication and fluids started, he began to get better and four hours later we were released and went home to regain a sense of normalcy (especially since school started for the other two 8 short hours later.)

So we did the hospital thing, again. We had an "Oops! Maybe no on the pumpkin." I can live in a world without pumpkin and so can Monk.  It doesn't send me to my knees to know that he can't have a piece of pumpkin pie, or enjoy fresh pumpkin seeds after carving a spooky jack-o-lantern.  This cultural obsession with all things pumpkin will pass, and we will move on. We are choosing to take a year off from our Annual Pumpkin Carving Party that we have hosted for 8 years straight, but in light of our new view on pumpkin, we hope all will understand.

We wish you all a Happy Halloween and certainly condone the use of sharp objects again the offending squash.  So ready, set.....CARVE!

A Different Kind of Challenge

With all the ice buckets being thrown around and on top of the heads of friends, family and celebrities alike, I started to think about how I could harness some of that enthusiasm for a cause close to my heart, food allergy awareness.

ALS #IceBucketChallenge
Given the millions of the money being raised for ALS, it seemed like a given that people around the world would become more educated about the disease.  I mean I had no clue what it entailed.  Without an educational component to the challenge, I wondered how much attention is the actual disease was getting.  I did want to pay my respects, and found out that ALS is a neurodegenerative disease that affects 30,000 Americans at any given time and the life expectancy after diagnosis is grim at just two to five years on average. 

It is amazing to know that in the just over a month since the first person called out ALS as the charity of choice for their polar splash, more than $15 million has been raised for ALS.  I hope that this challenge continues to help those who suffer from ALS and that awareness, education and research for the disease will grown at the same rate as their donations.

Changing it Up
In thinking of terms of food allergies, I wanted a challenge that would be educational along with being something that would be considered a "challenge."  I mean no one wants to be doused by a bucket of ice water, right? I started thinking about all the different ways to get people educated about food allergies. The facts alone are helpful, such as the fact that 15 million Americans have food allergies and that 1 out of 13 children ages 18 and younger is affected by this disease, but how does this help people to understand the world in which we live?

What if I challenged them to live as someone with severe food allergies for just 24 hours. Sure, it's not glamorous and it won't cause your friends to laugh hysterically while you suffer through gallons of ice cold water invading every bodily crevice, but maybe it will open some eyes to the struggles of managing daily life without everyday foods such as milk, bread, and eggs.

The Challenge
I hopped out of bed the next morning (I actually drug my butt unwillingly out of bed) and set to posting the challenge. Here was my first post:

"All of these ALS challenge videos have had my development wheels spinning, so I have decided to ask all of you to help me spread the word about food allergies by challenging each of you to spend 24 hours eating like my Monk. I will make it easy and only restrict you from the 7 of the top 8 food allergens that he is allergic too (not all 20 food allergies.) That means no eggs, dairy, wheat, peanuts, tree nuts, fish or shellfish. Don't think you can manage? Opt out with a donation to FARE (food allergy research and education) at the link below in support of our upcoming food allergy walk. I encourage those that take on the challenge to post pictures or videos of your favorite #monkmeals, and ask your friends to walk a mile in the shoes of those with food allergies. I was going to say that those who accidentally eat an allergen should donate the equivalent of the cost of an ambulance ride, but that might be a bit much." 

Since I have to shop for a much more restricted diet on a regular basis, my pantry and meal list was already prepared for me to follow the challenge and set the example.  

• Breakfast: Monk and I shared our favorite Kale, Mango and Pineapple Smoothie and for a bit of protein I had one of his Applegate breakfast sausages.
• Snack: Banana (which unfortunately, Monk can't eat since it is one of his allergies).
• Snack #2: I'm so hungry!!!!  Now I know why my child wants to constantly eat.  I grab a few turkey pepperonis (again, which Monk can't eat).
• Lunch: Corn tortilla filled with Daiya soy cheese and grilled using Canola Oil "butter". Served with a side of raspberries and strawberries.
• Snack #3: piece of Enjoy Life chocolate (free of all top 8!)
• Dinner: Ground pork, swiss chard and polenta skillet, which calls for parmesan cheese, but I substituted for Daiya Soy cheese again. The whole family got in on the action this time.
• Dessert: handful of Trader Joe's Citrus Gum Drops, which Monk and I shared.

After all of this there were actually a few things that I learned.

1. Soy cheese smells terrible, but it's not bad and melts very nicely.
2. Soy milk is terrible. Period. It just makes me sad.
3. A diet devoid of enriched carbohydrates makes for very hungry people. I totally understand why, "Eatie!!!" is the most frequent word coming from my child's mouth.
4. It really stinks when the rest of your family is eating ice cream bars and you get gum drops.

I hope that a few of you will join me in taking the 24 hour allergy challenge (or donate to FARE) . It can't account for the fear and pain of a reaction, but it can at least help people to understand the efforts taken daily by food allergy parents to keep their kids happy and healthy.

Eat well and remember to plan for lots of snacks!

Adventures in anaphylaxis

 Why would anyone who had a dairy allergic child go visit an ice cream factory?  My Monk has a dairy allergy.  It is both through ingestion and contact, so why risk it?

Allergy Prison
Over the last few months I have continued to try to educate myself and find out everything that I can.  Part of that journey was joining online support groups to be able to hear from my fellow allergy moms.  To know how they live, how they thrive and mainly to just know that there are children out there who have grown up happy and healthy with some of the same allergies that Monk has.

Unfortunately, instead of feeling empowered by their stories, I became more anxious.  Was I a bad allergy mom because I hadn't thought to call each food manufacturer to find out their labeling policies for cross contamination or because I still feed the rest of my family beans, carrots or bananas?

While I have the utmost respect for each and every allergy mom out there and the decisions we each make daily in order to keep our children safe, I was beginning to move back towards my desire to wrap my Monk in a bubble and let him float there beside me forever.  I am a worrier, a panicker, and someone who jumps to worst case scenarios easily, so this new found source of knowledge was threatening to push me back into an allergy prison, where everything would be a constant reminder of the dangers and threat to my child's life.

I need to find a happy place in the middle that will keep me educated but sane, and keep my child safe but with some semblance of normalcy.  So, when my older two children begged to be taken to the Blue Bell Creamery during their last week of summer vacation, I said yes.

Being Cautious
I will admit that the thought of millions of gallons of milk being heated, mixed, flavored, poured, and eaten was enough to give me hives, so we decided before we even left that Monk and I would not go on the tour.  Across the street from the creamery was an Aquatic Center with a great family pool, so our plan was that Monk and I would enjoy the pool while they toured and that they would join us after.

Turned out that we were not the only ones who were pulled by the impending start of school to run towards the country and call of homemade vanilla.  A small change of plan and we headed for the pool first, but not before we headed to the ice cream parlor.

A note for the dairy allergic: One of the employees told me that the scoopers in the Ice Cream parlor would give us a fruit bar if we explained Monk's allergy.  I have begun to carry special treats for Monk with me such as Dum Dum suckers, gumdrops or fruit snacks, so when we stopped first at the Ice Cream parlor, he was happy enough to get his own treat and saved me the additional neurosis of worrying about cross contamination.  I opted to forgo the ice cream as well, which helped defend against any possible jealousy.  Honestly, the lack of ice cream on my part was not as much in solidarity with my child as it was in opposition to my thighs.

Again at the ice cream parlor, I had heart palpitations just thinking of the hands, tables, walls being covered in milk proteins.  I was like the Predator except instead of infrared heat vision it was dairy vision. So I quickly found a table that was separated from most of the others, wiped it down with Clorox wipes and prayed that no one would try to touch my sweet baby. The result...we survived, no hives, no reaction!

Chilling Out Max
We headed off to the aquatic center to cool off and swim away the time before our scheduled tour.  The pool was great for the kids with the entire thing being shallow enough for Punkin to stand up.  There was a "rope course" across floating ice cream sandwiches and popsicles, a slide for the big kids and a banana split slide for the little ones, plus several other water features to keep them entertained.

When it came time for the tour, the other three took off back across the street for more dairy-laden fun while Monk and I enjoyed a bit more time in the pool, which included a short nap of snuggly baby tucked into the crook of my neck (aka...Paradise).

Between the fabulous Texas heat, two rounds of ice cream and plenty of time in the pool, the trip back home was a quiet one, but did include a stop in Chappell Hill, TX, home of Monk's favorite sausage! They have a great shop/restaurant that sells the Chappell Hill sausage and other products as well as serving BBQ, pastries and some of the most wonderful Kolaches ever! We only took a half-dozen home. So much for my thighs.

Vacationing with Allergies

It's not the first time. Last summer we went to Mexico for my brother's wedding. Of course all we knew at that point was that Monk had an egg allergy, and even then I was a crazy person who waved the EpiPens at any and every federales chanting, "Needles. Medicina por mi nino!"

At least this time there is no language barrier, no customs to get through,  and I have had a year of experience behind me to better prepare.

We opted for a much closer destination this time around, and headed out to the Hyatt Lost Pines in Bastrop, Texas.  Just a few hours car ride meant that we got to forgo the panic of boarding an airplane as well as having the option to pack the kitchen sink if I felt so inclined.

Prep Work
Anyone who has ever gone anywhere with three kids knows the prep work needed to make even a trip to the grocery store happen.  Needless to say, there was a bit more planning that needed to be done in order for all of us to be able to enjoy our time away.

Beyond making certain that everyone had enough underwear, appropriate shoes, and a toothbrush,  I needed to make sure that we could all eat without indecent. A quick call to the hotel and I was told that each room had a mini fridge, but none of their rooms were equipped with a kitchen.  I am not at a point yet where I am willing to trust others with food preparation for Monk.  I mentioned my concern to the hotel reservationist (side note: I have discovered that you get much more information and accommodation when you speak to the on-site reservationist, not the folks you get when calling the 1-800 number.)  Apparently the hotel has a finite number of microwaves available, but given our situation, she was able to guarantee that we would be able to have one.

I didn't really pack the kitchen sink, but I did pack the pantry.  I cooked pork, corn, broccoli and brown rice pasta, took various fruits, breakfast sausage, soy milk, soy yogurt, Chex cereal and numerous toddler squeeze pouches.  I researched the closest hospital to the resort (better safe than sorry).  I double checked ingredients on our sunscreens to ensure that they were allergen free.  Lastly, (and probably most importantly) we brought extra adults.  Vacations are always better with grandparents, right?  And when you are already outnumbered by your kids, the extra hands are much appreciated.  Plus, my parents have  actually gone the way of Benjamin Button and are more adventurous and fun as grandparents than I remember them being as parents.

Grams with Punkin on the water slide.

Monk and his favorite person, Boppa.

Rest and Relax
Well, sort of.  Has anyone ever rested on vacation with three children?

We arrived at the Hyatt Lost Pines where a very energetic young man had the privileged of unloading 400 lbs of suitcases, coolers, snacks, pillow, stuffed animals and such.  Kristen (yep, a guy) was our first staff interaction at Lost Pines and he set the tone for what would end up being the norm for their customer service.  Helpful smiles and, even though I'm far too young, lots of ma'ams greeted us consistently. 


Once we got settled I visited the concierge desk to ask questions about their medical emergency procedures.  I found out that I could dial a specific two digit number from any phone on the resort and immediately be connected with their emergency team.  Granted, it was not an emergency medical team, but they would go into action getting us to a safe place in the resort and getting ambulances to us.  They again mapped out the closest urgent care centers and hospitals in the area for me.

With all that handled, there was nothing left but to head to the pool and sit for countless hours soaking up the sun with a Mycolada in hand (just trust me that its better than a Pina Colada.) 


Entertaining the Masses
The pool area was a parent's dream. With a water slide, lazy river, splash pad, and beach all within feet from each other, the kids could enjoy themselves safely and within eye-shot of my lounge chair.  We found that the pool area didn't get busy until about 10:00 am, which was when the water slide opened.  So each morning after breakfast we went straight to the pool and staked our claim on prime territory at the base of the water slide.

The view from our shaded lounge chairs.

The pool was probably enough to entertain and exhaust my children by itself, but the resort offered several other activities on their daily schedule.  Bikes for all sizes (including ones with toddler seats for Monk) were available to check out, there were art projects twice a day (beyond your standard coloring sheet), visits from the resort's ponies and longhorns, exploring the butterfly garden, and Jag's personal favorite were the sports offered on the lawn each afternoon, such as soccer played with a 3 ft inflatable soccer ball! The Hyatt also offered paid attractions off property such as horseback riding and rock climbing complete with a zip line from the top!

Ponies were an added bonus for Punkin.

Jag got to show off his climbing skills.

Night time entertainment abounded as well with movie nights each evening on the lawn and s'mores at the fire pit, and even star gazing tours where we were lucky enough to get a close up view of Saturn and her rings. Amazing! And even with the added sugar of melted marshmallow and chocolate, my kids still managed to crawl into their beds and snooze off almost immediately each night.

Precautions
I knew that we would be spending countless hours outdoors and since Monk's EpiPens needed to be stored between 59°F and 86°F (meaning you can't be outside in Texas with one nor can it be kept in a cooler/refrigerator) I sought out a way to keep our EpiPens safe and cool.  I found Kool Blankets from Allergy Apparel, which have individual cells filled with liquid to keep the heat from getting to the medicine. I purchased two and kept one in the cooler while the other was wrapped around two EpiPens.  I swapped the blankets about every hour or so to ensure that they were kept cool.  I also purchased a waterproof EpiPen carrier so that we could carry them around the lazy river.  I will say that we did end up with condensation inside the carrier (none in the Epi containers), but overall it held up and relieved my fear of Monk having a reaction on the opposite side of the pool from our stuff.

Meals proved to be a different challenge. We don't eat out a lot at home.  Beyond having three children and the shear not fun-ness of having everyone sit still at a table for longer than 30 minutes, it can get expensive and certainly is not allergy friendly for Monk, but vacationing means restaurants and letting someone else do all the cooking.

Our reservation included a buffet breakfast each morning complete with omelet station. Cue anxiety! However, each day we would arrive at the hostess station and I would explain Monk's allergies and that we needed to be far from the food and omelet station as possible, and each day the hostesses were wonderful. They didn't blink or ask questions, but made arrangements to seat us on the far side of the restaurant.

For each meal I would pull out some of what I had prepared for Monk beforehand, pop it in the microwave and head out to the restaurants.  I would wipe their tables and their highchairs down with Clorox cleaning cloths amidst a few "she's that mother" kind of stares,  but, out of twelve sit down meals, we didn't have one food allergy reaction. Looking toward what I hope will be a future with less food allergies, I was actually fairly impressed with the resort's kids menu as it offered several allergy friendly meals, such as sunbutter, jelly and banana sandwiches and gluten free blueberry pancakes.

When Can We Go Back?
We managed 5 full days of fun and entertainment without the excitement of a full blown reaction (what's a week without a few hives to keep things interesting).   For our family, who were in much need of a vacation, it was perfect.  Close enough for comfort, but far enough away to feel the escape.  Thank you to the great staff at the Hyatt for helping to make it a great trip!

Is there such a thing as a family photo with everyone smiling and being still?

Check ups and milestones

Monk had his 18 month check up this week.  We went through all the questions of toddler milestones.

Does he say more than 8 words?
Lots more if you count "no" "mine" and different versions of "mom" used interchangeably depending on mood and how loud he has to be to get my attention.
Can he walk up stairs with assistance?
He can climb a 7 foot ladder with the bottom rung removed and get himself into his own high chair, so yeah.
Does he run?
HA!

While we all want to make sure that our children are hitting those milestones, I was anxious about a different measurement.  Weight.

Monk had been teetering just under the 20 lb. mark for months.  He would have a bad allergy month and loose several pounds only to put on enough weight to come back up to 19lb. 10oz. at our next appointment. No one said to me that he needed to be over 20lb. and no one seemed worried or was questioning his weight.  I mean he basically lives off of one source of meat (pork), fruits, veggies and rice, and doctors have commented that he is "small but growing." So the fact that we hovered just out of reach of what I considered in my head to be a milestone weight was really beginning to get to me.

When we got on the scale this week at the doctor, I cringed just a little bit.  I had the same feeling I get when I watch "Extreme Weight Loss" and the contestant needed to loose those last few lbs but ate a cheeseburger the week before weigh in!!!!  Beep, beep, beep.  The numbers go up and then down, and then...wait for it....your kid hits the power button.  Reset. Start again.  And the scale said...22lbs!!!  Needless to say I was excited.  Enough in fact to write a whole post about it.

It has been almost 2 months to the day since our last episode of anaphlaxis, and he has grown from being in the 9th percentile to the 21st percentile.  So I will be labeling this a success and hoping against hope that this is the new trend in our life.  In fact, I'm calling it a new year starting July 1. This family now runs on a fiscal year plan!

Maybe If I'm Packed I'll Never Use the Bag

Three trips to the hospital.  I should be a pro now, right?  But each time we hurriedly left for the hospital, my mind went blank and there were things forgotten. But preparing for our recent oral food challenge (story here) I had plenty of time to pack a bag and got to thinking that maybe I should just keep one packed with a few essentials that he and I will need to be comfortable (or as comfortable as you can be in a 10x10 room with a toddler strapped to a pulse ox machine.)

Spending anything longer than 30 minutes in one place with a toddler, there are certain essentials that you need to have on hand, but make it 4-6 hours and the list grows. I will start with a few things that will help anyone with a trip to the doctor's office for a routine check up,  getting your oil changed, or anything you dread doing with tiny humans.

Toys

PlanToys Nuts and Bots - $17.99

These wooden toys are rated for ages 24 months - 4 years, but all three of my kids at 17 m, almost 5 and 8 years old enjoyed playing with them.  The large circular topped screw was perfect for little hands, but to honest, while he wanted/needed my help to screw them into the adjoining "bolts" he mostly wanted to treat them as drumsticks.





Fisher-Price Laugh and Learn Baby iCan Play Case - $14.99

When I first saw this product (and this one) I was horrified.  I wanted to believe that I would never need to purchase something like this to keep my child entertained!  We are already turning into a world where we as adults are umbilically  attached to our phones, so I hate to think of passing it onto the next generation while they are toddlers. You know what I hate more?  Trying to get a bored toddler to sit still for more than 5 seconds as he tries to jump off of the hospital bed or exam table. This struggle only ends with me giving in and handing him my phone, which he immediately throws to the grown and...yeah, that is worse. This toy let's him press on the home key incessantly (his favorite activity) or play with other apps (which he refuses). It has a screen protector for sticky fingers and can handle being thrown without threat to that ingenious glass screen (insert eye roll). One warning is that this is only compatible with iPhone, iPhone 3G, iPhone 3GS, iPhone 4, iPod touch 2nd, 3rd & 4th generation.

Melissa & Doug Water Wow Paint Kits - $6.99 each

This was by far the most popular with my Monk and with Punkin, who loves all things art related. The spiral bound book comes with 4 coloring boards and a paint pen that you fill with water.  When the boards are painted with water the colors appear along with hidden pictures. No coloring in the lines required, and no worry that he will color the walls!
 






Melissa and Doug Jumbo Triangular Crayons - $7.99

A friend gave me the brilliant idea to have Monk color on the exam table paper. Why had I never thought of this before?  I bought him these special jumbo crayons because they fit better in his sweet chunky little hands, there is no wrapping to keep him from using all sides, and I love all things Melissa and Doug (no really, their stuff is just such wonderful quality!)

All four of these things can fit easily into a back pack or diaper bag with plenty of room to spare for all the necessities.

Clothing
As mothers we are programed to bring extra clothes for our little ones because no matter who you are or what your kid eats, an explosion of one kind or another happens to all of us. This is doubly true when dealing with a food allergy kid.  Monk happens to react by throwing up most of the time, so be it a trip to the ER, an oral food challenge, or just a day at the park, I always bring extras for him.

The thing that I forget about is extra clothes for me.  I didn't even think about it until an EMT, standing in the entry to my home told me, "Ma'am, would you like to change your shirt before we leave for the hospital?"  This really happened.  I had been thrown up on about 3 or 4 times and the epi shot had left Monk's leg bleeding, so I was literally covered in blood and vomit and had not given a second thought to changing my clothes in all the panic and worry.

Lastly, socks.  Two out of three hospital visits we didn't have shoes for Monk, but thankfully we at least had socks.  The obvious reasons for having socks is comfort, but beyond that, nurses will put a pulse-oxymeter on your kid's toe, and it only takes about one minute for curiosity to kill the proverbial cat and send little fingers to ripping at the tap holding the pulse-ox in place.  Socks will keep it covered and, voila, keep it on!  These Wrapables socks are super cute and they have great grips on the bottom to keep them from face planting on slippery hospital tiles.


Comfort Essentials
I dare you all to try to get a baby who has been given adrenaline followed up with steroids to go to sleep.  You might laugh and think that I am kidding, but my child was climbing up the side of his crib, not to sleep, mind you, but to climb. He was quite literally climbing the walls with energy. The only thing that got him to sleep was his own blanket from home (no, the gift shop decoy didn't work) and his passy. So make sure to pack along any comfort items that will help calm your little ones.

Food
Hospitals have cafeterias, and actually, so does our Allergist's office, but try to find allergy friendly food in a cafeteria.  The one time I tried, I came back with an orange and applesauce.  After 4 hours of no food I had one unhappy kids who could have eaten 10 containers of applesauce without blinking. So pack food. Pack lots of food. If you are hospital bound, pack enough for the entire night just in case.

Extra Stuff
Each hospital and Dr.'s office that I have been at is located in the black hole of phone service.  You can get a signal, and in fact they have wireless for their guests, but it will suck the life from your phone in a few hours flat. Imagine being stuck for hours in one place with no Facebook or Candy Crush means to communicate with family and friends. TAKE YOUR PHONE CHARGER!

Lastly, the strangest thing that I have packed in our little bag?  Plug covers. We actually spent 4 hours at a hospital following a reaction, whose electrical outlets were bed level on the wall with the bed pushed right up against them! Yes, I spent 4 hours keeping fingers out of sockets.

Medications
Not that I every purposfully leave the house without his medications, and it should be first on the list, but there is additional reasoning in bringing your own meds to doctors offices and hospitals.

The most important reason is in case secondary doses of medications are needed in route.  The one time we traveled via ambulance the EMT made certain that I had additional Epi Pens on me before we left.  Texas allows EMTs to administer epinephrine, but they may not have it stocked in the ambulance.

Secondly, My allergist once told me that they have to charge $25 for a single dose of Benedryl in the office.  Of course, if he needs it I never hesitate, but if he can wait until we get into the hallway, done.
Our pharmacy bill during our first hospital stay was over $1,000 with insurance. It amounted to one Epi Pen, Benadryl, Steroids, and Asthma medication. All of these things I either had in my medicine cabinet or in my purse at the time. Now again, I am not advocating for self administering meds in a hospital setting, but it does give me pause (and heartburn.)

I also had an experience in a non-pediatric ER setting, where the doctors on hand did not follow the same Benadryl dosage that my allergist and other pediatric ER docs had advised during previous visits.  When I mentioned that Monk's hives (which covered his whole trunk) were returning and, according to my calculations, it was past the time for his next dose, the doctor told me that I had to wait at least another 2 hours before giving him more.  What?  Thankfully we were discharged shortly thereafter and I was able to give him his next dose on the way out the door.

Scramble!
I hope that this post didn't cause anyone to jump from their chairs and start running through the house collecting items.  It does help to be prepared, but not panicked. Until now, each time I grabbed a bag to head out the door I remembered more and more of this list.  Part of me doesn't want to have a bag packed since that seems like in some way I am willing the universe to give us a reason to use it, but I prefer to go with "the watched pot never boils" theory. And I will watch that bag like there is no tomorrow!

Disclaimer: Links provided in this post will direct you to Amazon.com. I am a participant in Amazon Associates and as such will receive ad revenue from items purchased through the above links.

The Toddler Two Step

One of my last posts was brought to you by the number three, so it is only fitting that this next post focus on the dreaded two! It may have little to do with food allergies, but over the last month, my sweet little 17 mo has transformed. It arrived 7 months early...the terrible twos. 

We all reach that point with our children when we realize that public appearances must take a back seat.  No more dinners out, no movies, and even trips to the grocery store become a hassle.  I am there.  Monk has officially moved from baby to toddler, from sweet and cuddly to shrill and unpredictable.

Dance Shmance
Sitting at Punkin's dance dress rehearsal a few weekends ago I was overcome with sudden dread when a friend mentioned that her toddler was staying home with a babysitter.  Why didn't I think of that, and why in the world did I think my youngest child could sit through 2+ hours of piques and plies to every Disney princess ballad imaginable.

Lights go down, curtain comes up, sippy cup gets tossed under the seats, the passy gets thrown to the ground and cue the scream! So begins the tag team parenting at the back of the theater. 

But really, it was wonderful, and who wouldn't endure all that for this face!

Bye Bye Baby
So our sweet, once quiet, baby has begun to exert himself, vocally and physically.  The word "no" has entered into his vocabulary as a way to tell us just how he feels. Oh yeah, and it is usually accompanied by some vicious pounding on the ground just to drive the point home.  What is all this for you ask?  Typically it is that we won't let him play with the hello (phone) or that his brother or sister have...dare I say it....touched him!

He is a little man on a mission, and that mission has become to do whatever he likes completely unassisted and unobstructed.  Climbing is the newest and most popular sport in our house, whether it is up his brother's loft bed (even though we removed the bottom ladder rung), up storage shelves, on top of the coffee table or head first into the bathtub.  Like a shark in the ocean, he can't and won't stop moving! And recently he became the first Garcia to need stitches, although we opted for more manly Dermabond, for a small gash to the forehead. Those of you who know my oldest will try to please contain your shock and awe. He is ready to feed himself, to get up and down from chairs, the sofa, the toilet (no, I wish!) And lately, he has perfected his mad face.

And all this makes me smile. Why?

My little Monk is already an advocate for himself.  He didn't want any strawberries tonight so he threw them. He'd rather play than take a bath, so he screamed his way through it.  Diaper sound restricting? Kick, wiggle, go limp and then flail to keep from getting Pampered!

He knows what he wants and he lets us all know in no uncertain terms that he isn't that last child that get's forgotten, and he also isn't the sick and helpless one either.

When you spend the first year of your child's life afraid to feed them anything but applesauce, and become anxious as babies 6 months younger are outweighing him by 5 lbs, you worry that he will be the weak one, the small one, just ripe for future picking and bullying.  But seeing his personality start to explode blossom makes me feel a little better about the future.

My Monk is still as sweet as can be...as long as you are doing everything exactly as he wants it done.

Does it count as a first if he didn't eat any?

Written 6/14/14
I have been dreading today for some time.  The oral food challenge that would finally confirm whether or not we had a fish allergy.  Feeding a food allergic person the offending food in the presence of a doctor is the last step in food allergy diagnosis after skin and blood testing.  Some consider it the only true test of an allergy.

Preparation
Here is what I was told to expect. We would arrive at the allergist office first thing in the morning (7:30am to be exact) where they would start with a skin test for the fish. Why suffer through the challenge if a skin test would reveal the allergy? If the test was negative, we would begin the food challenge, feeding Monk increasingly larger portions of fish for about a 3 hour period. If he makes it through all portions without reaction then they would monitor him for a few more hours and then send us on our way with a green light for fish!

The pure fact that you are about to feed your child something that has landed him in the hospital in the past doesn't sound scary enough?

Throw in a few more criteria.

• Don't feed the child before or during the challenge. Last meal was at 6:30pm the night before.
• Napping? Nope.
• My kid isn't entertained by TV. 

So in my head I was imagining about 5 hours stuck in a small office with a toddler who is hungry and sleepy and active yet likely to be completely bored and unentertained by anything I provide. Oh and what's for breakfast? Salmon.

For Real Now

We are in the car at 6:45am and ready to go to the allergist office with empty bellies but Monk still had a smile in his face.

We arrive at the empty office (cause no one schedules appointments for 7:30am unless you have to be there all day!) and get shuttled immediately into an exam room. Our room. Get comfy!

Up first? Skin testing (Want to know more about skin testing? Check out my previous post here.) 

Per the usual we have a positive and negative control prick along with one for salmon and one for cod (apparently the gold standard for fish allergies.) Below is a picture of Monk's back during the skin testing.

 

See that large red hive on the top left?  That would be the positive control.  The only reaction.  Yep, nothing from the cod or the salmon.  This was the second skin test for fish that Monk has had. The initial test was given shortly after a salmon dinner sent us to the ER for the first time (read that full story here) and that one too was negative.  The negative result meant that we would move forward with the oral food challenge.

By this time my Monk has been pricked instead of fed and was not too happy.  In fact, each time the door to our exam room opened, he would start crying.  This was going to be five hours of unadulterated hell adventure! 

In walks the nurse holding the smallest piece of salmon. Think flea sized. Just as we readied ourselves for whether or not we would see Baby Jekyll or Hyde when tasting the salmon, the nurse discovered a hive.  And then there were two.  And as I looked over his body I discovered dried blood behind his ears (a tell-tale sign that he reacted to something during the night.)

On went the brakes and out went the nurse and our miniscule bite of salmon.  Since he had eaten nothing, been exposed to nothing, we had to assume that the skin test caused a reaction.  We believe that he even started reacting from the cooking of the fish, as he had the first time, and that was why his eczema behind his ears had flared and bled during the night. So he essentially failed the challenge before it ever began.  

For me the result was certainly a double edged sword.  I had managed to avoid a few hours of toddler mayhem in exchange for certified allergy.  But on the bright side, a certified allergy is better than a mystery reaction, and it brought us one step closer to completing the allergy puzzle.

P.S.  I will say that I was certainly prepared for our stay and had packed not one, but two bags with essentials, new and exciting toys and more. Want a peak into those bags? My "hospital bag" list, or "the list for anyone who will be stuck in a small room with a small child for any period longer than 30 minutes", is shared here.

Dinnertime Milestone

Last night was a dinner breakthrough.

For the first time in forever (Cue dancing snowman. Oh wait, wrong story.) we all ate the same dinner.  All five of us, Monk included!

I have been wondering over the last year if and when we would get to this point. Would we get to this point?  Sure I had to make an adjustment to the recipe for his plate.  But for today I am considering it a personal victory that we were able to eat as a family together.  To eat from one pan. Can I get an Amen for less dishes?

Did everyone eat the pork and greens skillet pie, cleaning their plates with smiles on their faces?

Hahahahahahaha!

Seriously? No. I have three children whose tastes and opinions change more frequently than the weather in Texas. But Monk loved it. Monk ate seconds! And that, ladies and gentlemen is how I measure success. 

Want the recipe?  It's a Martha meal, and you can find it here.

For dairy allergies, hold the Parmesan until the end, scoop out a bit of the pork and greens as well as the grits for your food allergy monkey, then throw in the cheese, bake it in the oven and everyone is feed from one meal!

Three Signs and You're Out!

Today's post is brought to you by the number 3.

Three for the number of trips we have had to make to the hospital after allergic reactions.  Three for the number of times that something/someone sent me a warning of something wrong.

Advertise Here
The past few months have been a series of ups and downs.  Whose life isn't, right? And we all have those times when the lows seem to sink a bit lower, when you feel kicked when you're already down. 

It seemed like several times within the last 6 months that I couldn't get every member of our family to be healthy. Someone was always sick, and it wasn't always Monk.  His brother and sister had their fair share of fevers, colds, and such. But it was days like the morning that followed our second hospital visit, the one were we didn't get treated (see full story here), that really brought me to my breaking point.

After a night of staying up watching my youngest to make sure that he didn't have a secondary reaction, I relished sitting alone in my office, only as a second to taking a long nap. So I gladly left Monk with his babysitter and dropped the kids at school, only to be called back to the school office within the hour to pick up Punkin, who had vomited in class.  Weeks, months of shortened days, of missed days, of work not getting finished. It's the life of a mother, but this mother was done.

I was spent and exhausted.  Feeling defeated, I took her home, relieved the sitter and fell to my knees. "If you have something to tell me, please just take out a billboard!" Some days wold just go easier if He would just spell things out.

I asked for a sign. In truth I wanted it 20 feet tall and hanging just off the interstate, and maybe that was all I was willing to see.

Numero Uno
That Wednesday morning began as they all do, with no billboard propped up at the foot of my bed to tell of me of auspicious things to come, so I woke up and went to get dressed. I pulled a shirt from my closet, the same shirt that I wore on the day that we had to take Monk to the hospital for the first time. That voice in the back of my head, the one so often downplayed, said not to wear it because of its previous affiliation. I hadn't worn the shirt since that day. But it was only a shirt, and it would be silly to wear something else, right?

Second Chances
Fast forward a few hours and the kids are at school, leaving Monk with me to do the grocery shopping. We only needed a few things, but one of them was milk.

Monk has been diagnosed with a milk allergy since he was around 8-9 months old. I had begun to suspect that the milk allergy was getting worse and not better so we contact tested him in April. Basically this means that the allergist put milk on her finger and touched him with it. Below is the picture of that days reactions. The two bottom-right reactions are milk extract and regular milk, just brushed on the skin, not pricked. The result: Monk is contact allergic to dairy. He can't be touched by it.

The allergist suggested that we buy the kids cups with lids for when they drink milk, reducing the amount of milk spillage during the ever-present accidents. But we could still have milk in the house and continue to drink it? As long as we are careful. (Did you catch that last sentence?)

Back to the point...

Checking off my list, we made it through the store and the register. As I scanned my groceries I had a sudden feeling of massive anxiety come over me.  You know the kind of anxiety that ties you up in knots and renders you helpless. The kind that makes you could swear that someone you love is in danger.  I quickly thought about calling my kids school to check on them and call the hubby's work. Scenarios of the school on lock down or fire in an office building ran through my head.

I jump to extreme conclusions quite often. The hubby has on several occasions said that I needed the "jump to conclusions mat" from Office Space (actually, they apparently sell them!). Given my propensity for panicking, I talked myself down from the cliff, bought my milk and left the store.

Strike Three
With Monk down for his afternoon nap, I decided I could treat myself to a snack. Option 1: frozen coffee (aka, milk with caffeine free white chocolate flavored instant coffee mixed in) or option 2: smoothie.  With 10+ lbs of baby still clinging to my thighs I stood before the fridge arguing the finer points of going the smoothie route (less calories, fulfilling my veggie/fruit servings for the day, non-diary). The voice returned, urging me toward the frozen pineapple and kale, but again, it lost out and was shoved back into the recesses of my cobwebbed mind.

I'm Out
My hour of peace and child-free time flies by quickly and when Monk wakes up I don't even think about my glass of half-drunken coffee/milk. Given my child's innate spidy-sense for finding food, it isn't longer than 5-10 minutes when he finds my cup and dumps it on his head in an attempt to drink some.

I have no idea if any actually goes into his mouth, but everywhere it hits him begins to get covered in hives and I notice blood running down from his ear, where his eczema spots have opened up. I call our allergist immediately and sit on the phone with her nurse, describing every 2-3 minutes the state of the hives, and when it become clear that they are spreading and will soon cover his whole body, she tells me to hang up, administer the Epi Pen and call 911. All of which I do.

Trip three to the ER.

Hindsight
Looking back as we sat in the ER for a few hours to ensure that the reaction had passed, I realized that I was given a sign three time, essentially, a billboard. There is a reason that they say that "hindsight is 20/20" and I can't spend my days looking back on should've, would've, could've, but I do know that I will be burning that shirt and listening to my gut a bit more closely from now on.

The Label Strikes Back!

Read the label, read the label, read the label...and then read it again. When you have a kid with food allergies it just becomes second nature.  I find myself reading labels of things that I am not even planning to give to Monk just to see if it is viable option.  If a package of strawberries had a label, I'd read it.

Or would I?

Labels aren't just on food
Sitting next to my kids tub are about 5 bottles of shampoo and body wash. Some for the older kids and a couple for Monk. He has special shampoo for when his eczema flares up, regular tear free baby wash, and then a bottle of "natural" head to toe wash that has been there for months but rarely used.

Well, I used it, and seeing as most of my posts end in reaction, you can probably guess what happened next. Hives. All over. I pick up the bottle, flip it over, and right there is a list of sources for the natural ingredients. Among them, coconut and sunflower.
 

The Catch
Now my label reading will extend to shampoos, soaps, lotions and such, but there is a catch. The labeling laws for these items are not the same as they are for food. The FDA requires food manufacturers to list the top 8 allergens by their source name in ingredients lists (e.g. Whey as Milk, etc.), and more and more manufacturers are moving towards "Contains" and "Manufactured on" statements to help those suffering from food allergies.  Beauty products are not required to do the same.  The ingredients in the body wash that come from Monk's allergens are polygyceryl-10 laurate, cocoglycerides, sodium coco-sulfate, coco-glucoside and glyceryl oleate.  Try remembering those the next time you are at the store. Of course, since coconut and sunflower oil aren't included in the top 8, the source wouldn't be listed anyway, and it is only because this wash is touting its natural ingredients.

So here is the problem: the hair must be washed.  I mean, the child was labeled "Baby Elvis" at 3 months of age for a reason.

Lip curl and mic ready!

Almost every shampoo that I have come across in the past few weeks of researching this issue has coconut in some form or another. Scouring the internet to find a coconut free shampoo is not an easy feat. I posted the question on two different allergy forums because someone must have had this problem before, right? I got a few great suggestions for soap that is allergy friendly but shampoo is difficult. This blog, Allergic to Coconut? had a few answers including going shampoo free with apple cider vinegar and baking soda (pretend you didn't just gag from the thought of smelling your sweet vinegary baby).

Before I run out and spend $20 on 8oz of shampoo or soak him in vinegar I will consult my allergist to see if I am taking things to the extreme (it wouldn't be a first.) It may be that the sunflower alone or in combination with several sources of coconut in that particular shampoo was what caused his reaction. Either way, that bottle is going the way of the dodo, at lease in my house.

Little Miss Mommy

I am a proud mama this morning.  My daughter, at 4 years of age, already "gets it."

Each morning my older children's school holds assembly. The entire student body (PreK - 8th grade) along with parents and teachers join together to start the day with prayer and announcements.  It is a wonderful time for community and Monk and I stay for assembly daily. 

Now that Monk is a bit older and a bit more mobile, sitting quietly in my arms isn't high on his list of priorities.  He wants to interact with the children, and they want to interact with him. While other parents of young children might worry about the spreading of germs and viruses from our sweet little school-aged incubators, I worry about a contact food allergy reaction. (Monk has reacted through touch alone to milk, eggs and peanuts.)

Each morning at assembly, the little girls in Punkin's class swoon over Monk. What little girl doesn't love babies, right?  There have been a few times when I have had to asks that they don't touch Monk in case they ate one of his allergens for breakfast. Of course, most look confused. I mean, they are 4 and 5 years old. Why would their milk and cereal or scrambled eggs make any difference when just touching him?

This morning Monk squirmed out of my arms to go visit his sister, already sitting with her class and friends.  Of course this caused squeals of delight from the girls who were excited to see him.  I see Punkin talking to one friend in particular and then they both walked over to me. "Mommy, she didn't eat peanut butter or eggs for breakfast. Can she touch Monk?"

I cannot express how proud I was that my daughter knew enough to ask her friend what she had eaten for breakfast before allowing her to touch her brother.  Add to it that she checked with me.  I know that my kids hear me when I talk about Monk's allergies and what we must do to ensure that he stays safe, but for her to take on the role of advocate was heartwarming.

Now if I can only get them to listen so well when I ask them to clean their rooms.

After the Epi

For everyone in life there are those days from where you measure things: before marriage, after kids, etc. Although it may be a slight exaggeration based on my current frayed nerves and heightened sense of fear and reality, but Monk's latest anaphylactic reactions makes me think that something has changed and we will never view food allergies the same AE (After the Epi.)

This was not the first time that we had to use the Epi Pen on Monk. It was however a day of other firsts. It was the first time that I was alone while he was reacting.  It was the first time that I had to decide to take him to the emergency room. It was the first time that I sped down I-10 while continuing to bop Monk on the head to make sure he was still responsive. It was our first time at the hospital.

Slow Progression of Symptoms
Given the fact that I have three kids, and my oldest had a certain panache for American Ninja Warrior type behavior, I was surprised that we made it this long.

The night before the trip to the ER, while I was baking salmon for dinner I had noticed a small bit of wheezing from Monk.  This had become a regular occurrence within the past few weeks as our trees released a deluge of pollen, so I didn't think much of it beyond giving him a few puffs from his asthma inhaler and getting dinner on the table. I left to met a friend after dinner and came home to quiet house with all three children tucked snugly in their beds (thank you, hubby!)

Morning rolled around and the before school roller coaster began. As I ducked between rooms and school kids I noticed that Monk was wheezing again and breathing very quickly. Could it still be from the fish the night before, of which Monk only had a small bite and spit out?  "Puff, puff" and I finished getting the kids ready for school.  When after 10 minutes the medicine seemed to wear off and Monk's breathing again got rapid and labored again I gave him a second dose and called my dad  (If you haven't read any previous posts or you don't know me, Dad's a pediatrician.) He told me to wait 15 minutes to see if the second dose continued to help him and regularly count his breaths per minute.

I loaded the three kids into the car to run them to school 2 minutes away. During the trip there Jag called from the back seat that Monk had thrown up. It seemed more like spit up so I didn't panic too much, but discovered later from the hubby that he had thrown up the night before too.  I quickly dropped the kids at school, came home, and called my dad again. By this time he breathing was back to being quick and labored. I counted his breaths per minute and they were just above 60 (I was later told that 30-35 was normal). Dad told me to look for chest retractions, which he had below the rib cage and between each rib (also referred to as intercostal retraction.) Web MD has a good definition of chest retractions here and how to use them to determine level of breathing difficulty.

We made the decision that he needed to go to the hospital, so I gave him one last treatment and put him in the car.  At 8:00am in the city, traffic was going to be horrendous getting to the medical center, so I opted to head to the West campus of Texas Children's Hospital (plus, that is where our allergist offices.) I have never gripped the steering wheel so tight and never had such a long drive.

If I had to do it again I would have called for an ambulance. What is typically a 20 minute drive (I have no idea how quickly I got there) is excruciating when you can't see your child in their car seat and have to depend on hearing him breathe or making a noise every so often in response to me grabbing his head and shouting his name.

Finally at the ER
I wasn't sure what was wrong with Monk. Had he developed asthma? Had his seasonal allergies gotten worse (in a week?) or was he in anaphlaxis? The only other times we had experienced an anaphlactic reation in him, it presented as hives and vomiting, so I was confused and scared.

When we arrived at the ER I told them that I wasn't sure whether he was having an asthma attack or whether he was in anaphlaxis.  We were brought into triage straight away to collect his vitals and then moved just as quickly into an ER room.

Within about 10 minutes we had been seen by at least 5 people.  I had no idea who was who but there were doctors, nurses, and respiratory specialists. They determined pretty quickly that it was likely anaphlaxis since he had thrown up, and ordered an Epi Pen.

As soon as it was administered his breathing was back to normal. An IV and pulse oximeter cords kept my active 15 month old from moving in anything larger than a 5 foot circle.  With that, the monitoring time began.  During our monitoring time, fever, blood pressure and respiration checks were done regularly. He received IV steriods, Benadryl and breathing treatments. A side note for medical personnel: A big purple dinosaur-faced nebulizer mouth piece does not make it less scary for children.

Lots of cuddle time while we waited out our monitoring time.

Around the 6 hour mark, when we should have been wrapping up our monitoring time, Monk's breathing relapsed and he starting having retractions again.  While we did not have to administer the Epi Pen a second time, they did put him on oxygen, which was twice as traumatic as Barney the Nebulizer, and decided to admit him overnight for more observation.

The next 24 hours were relatively calm, which the exception of a trip to the X-ray room to rule out pneumonia. Regular doses of medications and vital checks ran every few hours, even throughout the night.  I was actually thankful for the overnight monitoring, even if it meant that I was awakened every few hours.  When he has had reactions at home in the past I have either forced myself to stay up late or set alarms to check on him during the night.  The pulse-ox beeps and the sweet nurse were my alarm.

Finally napping. Steroids and purely being a 15 mo don't make for much rest.

Our discharge the next morning was delayed only by an odd discovery on Monk's X-ray that needed to be run through pulmonology. It was decided that this oddity was neither tied to his reaction nor cause for immediate alarm, so 30 hours after we first stepped through the ER, we were sent on our way.

Questions answered? Zero.

The Cause?
To this day, now three weeks after the original incident, we still don't know for sure what happened.  Monk was given both a skin prick test and blood test to check for an allergy to salmon (and fish in general) and they were both negative.

For now we must avoid all fish (treating them as an allergen) until we can undergo our first oral food challenge in a few months to rule it out completely.

After the Epi
I would like to note that the picture in the header of this post was taken soon after the Epi-Pen was administered.  For a long time both my hubby and I were scared of the Epi-Pen and what it might do, but this picture shows how much better he looked and felt. My fear of the Epi-Pen has somewhat subsided now that I have seen, twice, how quickly it can make my Monk feel better.

So maybe the AE should be an AH (after the hospital) but either way, something has certainly changed.  There is now a clearer sense of reality, that a life of ease with what food we cook or eat is over.  There is a great forum discussion on Kids With Food Allergies that is actually called "After the Epi-Pen" and is a great discussion about downloading all of those post reaction feelings and how to move forward.

For those that have already read my previous post, An Open Invitation to Moms, this was my first step in getting it all out, releasing the stress, anger, confusion of it all.  I wrote that just a few days after we got out of the hospital. This blog, my writing, is my therapy.  As a type-A control freak, food allergies can be a challenge.  It takes away my control, and sharing our story helps me to regain a bit of it.

Thank you for listening,

Please note that I am a mom, not a doctor or medical professional.  My posts should not be taken as medical advice, but are intended as stories about our own experiences. Each and every allergic reaction can present and progress differently.  Always follow your allergy action plan and contact your doctor if you suspect a reaction.