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.

Now Labeled Asthmatic

I haven't yet broached the subject on the blog about our first hospital visit and part of that is because I have so many questions that are still left unanswered. In the meantime there is one thing that our hospital stint did get us...a new label.

Up until this point most of Monk's allergic reactions, severe and mild, presented as hives and vomiting.  Because of this, that little section on his allergy action plan continued to happily read: "Asthma: No."

This last reaction changed everything. For the first time he presented with breathing problems, and I learned a slew of new vocabulary words such as retractions and pulse ox and new mamma skills such as measuring breaths per minute. So almost a year after our first allergic reaction, we have another new label, asthmatic.

Warning Signs
Looking back over this past winter it should have been clear that we would eventually come to this point. Monk suffered through three rounds of RSV, and each time had to go on prescription asthma medication to help him breath. But these times were just temporary and only to get through the illness, so no real reason for a label, right?

Then there was another previous reaction where his legs got marbled and purplish. This could have been signalling a lack of oxygen in his blood stream, but I had no clue! I would like to note that we did call the doctor on call who didn't think much of it then so neither did we.

Hindsight is just that. I can harp on things that happened in the past, but I can learn from them.

Moving Forward
With a new label comes new meds. It makes me laugh sometimes at how easily my child takes medication. It is our daily routine now so it is something that he has gotten used to.  I do catch him carrying around his Aero Chamber on occasion, putting it up to his mouth and making noises like it is his microphone. 

I look at this new label as one more mystery solved, one more problem identified for which we have a solution.  The more we know and the more we experience, the better equipped we are for whatever is next down the line. I still hold out hope that maybe this label will go away if and when we cross out some of his food allergies, but as of now our updated allergy action plan reads, "Asthma: Yes (higher risk for a severe reaction.)"

Don't know what an allergy action plan is or what it looks like?  Check one out here.

Farm to Allergy-Friendly Table

As most of you already know, my sweet Monk has food allergies to several foods. The good thing about his allergies is that many fruits and veggies are NOT on the list.  I am hoping that changes in our family menu to accommodate for his allergies will result in an all around healthier diet for all.

With this in mind, I decided that it was time to investigate and test out a growing trend in the food market, the CSA.

What Is a CSA?
CSA stands for Community Supported (or shared) Agriculture.   It is a group of people that have opted to purchase fresh produce from a network of local farmers and food producers.  It can include fruits, veggies, meats, eggs, etc.  Food is collected by the CSA organization, divided into bushels and then delivered to either pick up sites or to your front doorstep.  Think of it as someone else shopping for a wide variety of fresh produce for you at the local farmers market.

Why CSA?
Everyone has a different reason for joining a CSA, whether that they want to supporter local growers or that they want to ensure that they get the freshest seasonal food available.  Of course both of those reasons are great side benefits for our family, but one of the real reasons is that during the last year of food allergy discoveries, the times when I was least stressed about feeding Monk something was when I knew what was in the food, where it came from, and that all preparation was done by me. Joining a CSA takes that comfort one step further in knowing that the produce was farmed locally, removing one more step in the process of getting from the ground and into his mouth. It might seem silly, and might not make a big difference allergy-wise in reality, but in my head at least, I am doing one more thing for the health of my family.

The best part of all with our CSA?  They deliver to my doorstep! Yep, no pick-up. Can you say easy and fabulous and I want to kiss the delivery person when he/she comes!

Farmhouse Delivery
The CSA that I chose to order from is Farmhouse Delivery.  After getting two different recommendations for them, I looked into it myself and liked their options, flexibility, price, and pretty much everything.  After you register on their site, you will be able to receive orders either weekly or every other week.  Here are your choices:

Choice 1: Medium or Full bushel
The medium bushel will feed 1-2 people for a week and the full, 3-4 people. My first delivery was a medium bushel and contained 1 lb of strawberries (fresh from Poteet and eaten in 1 day by my children), a head of green leaf lettuce, 4 beets (watch for my recipe for Oven Baked Beet Chips later this week), Asparagus, Sugar Snap Peas, and a bunch of rainbow carrots (purple, orange and white).

Choice 2: Substitutions
The online registration form allows you the option to select up to three dislikes.  On my last delivery I had selected braising greens as a dislike and thus had asparagus put into our bushel as a substitution.  I did email the operations manager before joining to ask about the ability to substitute for allergens and was told that it would be no problem as long as I alerted them to any changes I needed before the weekly deadline (for me our deadline is Tuesdays for Saturday delivery).

Choice 3: Add-ons
Farmhouse Delivery offers add-ons to your regular bushel such as additional fruits and veggies, dairy, eggs, meat, breads and sweets, prepared foods, and pantry staples.  You can chose to have these items delivered weekly, every other week, or as a one-time add-on.

Additional Allergy-Friendly Notes
I also asked them about cross contamination issues as I was worried that if I ordered dairy or bread goods that they could contaminate the produce.  They assured that these items were packaged separately, and they were. We ordered bread and goat cheese during this last delivery and both were individually packaged and the cheese was in its own cooler. They do sell nut butters as well, so I would make sure to alert them to your allergy needs if you plan on purchasing these items.

Although I haven't tried any of them yet, they also offer Gluten-Free and Vegan options in their Bakery and Sweets shop.

Drop Off
We came home on Saturday from a morning outing to find a plastic bin on our front porch.  It was filled with our order and a few frozen bottles to keep it all cool.  When it is time for our next order, I simply put the old bin on the porch and they will replace it with a new, full bin!

I am hoping that this new venture will serve to broaden our palate and offer some new options to our Monk. Case in point, next week's bushel contains a bunch of Kohlrabi. What?!?