Aden’s Story

Yesterday, my sweet baby Aden was under the weather with a fever. It was not coming down naturally and he seemed uncomfortable, so I gave him some paediatric ibuprofen. I had the dye free formula, which he has taken a couple of times before.  I thought it was “safe”. The “natural” flavouring is often grain based. Most foods, drinks and medicines use a grain base to deliver “natural” flavouring and/or colouring. FPIES triggers generally take a few exposures for the allergy/intolerance/reaction to develop. We had hoped Aden would not be FPIES to grains like his siblings. FPIES is supposed to be rare, it is not supposed to run in families, and it is not supposed to have the same triggers for each family member. Several hours after I gave the medicine Aden started showing all signs of a FPIES reaction. Having been down this road with Lily and Liam, we knew time was not on our side. There are currently no test to identify FPIES. It does not present like a typical allergy and reactions are delayed by several hours. It is an IgG response rather than an IgE response, meaning skin test are not helpful. Diagnosis is made through food trials and medical history. The only treatment is to treat the presenting symptoms. In this case and most cases treatment involves intravenous fluid resuscitation (rapid fluid replacement) for hypovolemic shock; secondary to the mass amount of vomiting and/or diarrhea.   

We rushed Aden to the children’s hospital and tried our best to get medical professionals to understand what FPIES is. We brought all the appropriate medical documents but it felt futile. We felt silently judged as “difficult” parents who did not want mainstream treatment. As we waited our turn in triage Aden’s body became more and more limp, he drifted in and out of consciousness, was pale, developing the classic small spread out red dot rash over his trunk and limbs. Every time we would try to rehydrate him orally he would thrash/arch, cry out presumably in pain, his stomach would ripple and then he would vomit large amounts of fluid. He had stopped passing urine; and his limbs were getting cold despite his fever. Our time in triage was long and not treated as a serious life threatening allergic type reaction. Even after going back to bring his changes to their attention, we felt dismissed.  

Once admitted, the attending physician did not understand what FPIES was and challenged our information.  Precious time was lost explaining over and over what was really going on. Aden was subjected to a battery of invasive tests.  As a medical professional myself, I understand the need to look at all possibilities to rule out infection, but this was not my first rodeo.  I had come prepared with doctors letters, and provided a history.  My baby was presenting with signs of shock secondary to the FPIES reaction and he needed treatment fast!  Luckily the nurse was quick and skilled with the medical tests that were ordered.  She managed a quick intravenous start despite his body shutting down to rapidly replace a large volume of fluid.  Medication to stop the vomiting was administered intravenously. Collectively, we found a “safe” medication to bring down his fever (not an easy task).  As the intravenous fluid infused my baby slowly started coming back to life.  Once the medication for his vomiting kicked in he was able to keep in fluid by mouth.  After a while he started urinating again. As expected all his tests came back showing no signs of infection. 

I am grateful we live near a world class children’s hospital. I am grateful that we were seen and eventually cared for. I am grateful that when we left maybe a few more people in the world know what FPIES is and how to treat a reaction. However, this emergency room experience was over six hours long. Only the last two hours were actual treatment. Today, Aden continues to cry out in pain on and off. His stomach still ripples and rumbles. He remains pale. He remains lethargic. He screams with elimination. He sweats in his sleep. Everywhere the rash appeared he has developed eczema.  He has burn marks from the “hypoallergenic” hospital adhesives in the most sensitive areas.  I am grateful my sweet baby is in my arms (hopefully recovering), but frustrated. I am frustrated with the lack of awareness of FPIES among health care professionals.  I am frustrated that the lack of awareness made our concerns feel dismissed. I am frustrated that this lack of awareness delayed treatment and could have been detrimental.

Please talk about it when the opportunity arises.  As much as I wish I could keep my children in a bubble, they will not be with me 100% of the time.  Their lives could depend on other individuals knowledge of this disease. Aden is eight months old, Liam is turning three years old, Lily is four years old. They all live with FPIES. Their triggers are: corn, rice, wheat, oats, and any other grain you can think of. These ingredients appear where you least expect it. Trace amounts can be hidden as “natural” flavouring and colouring. Their reactions have always been from trace amounts. If my children were to accidentally have a larger amount of grains, a reaction could be fatal. Reactions have not just been from ingestion. Animals we go to as a source of meat or dairy that have been fed grains can cause problems. As does absorption through toothpaste, shampoo, soap, cream, paint, markers, play-do, etc. Symptoms don’t stop with resolution of an acute reaction.  Our children live with challenging long term effects from every exposure.  

We deal with this by trying to live a Paleo (grain free) lifestyle. We make everything from scratch and find grain free alternatives for everything out of medical necessity. We are not radical, we are not “hippies”, we are not trying to be difficult. We are saving our children’s lives. We did not choose this disease, we do not like this disease, we do not want this disease. This disease chose us. We face it, we learn, we educate, we survive, we thrive.

If you have made it this far, thank you for reading. This post was written to create awareness. To learn more please visit: http://fpiesfoundation.org and http://www.iaffpe.org.

Here we go again!

Okay, so I totally bailed on my blog and whole30.  I made it ten days, we ran out of groceries and I was hungry…  it was a slippery slope from there.  There may have been s’mores and a campfire involved.  What I learned was to prioritize grocery shopping and meal planning.  

In those ten days both Aden and I experienced many benefits.  I’ll try to break down my experience.  

Aden:  Skin cleared up.  Digestive issues cleared up.

Myself:  I didn’t miss milk.  I stopped craving food (with the exception of chocolate sometimes).  Everything tasted better. I had more energy and clarity.  My joint pain and inflammation was near undetectable.  My nails usually have ridges and the new growth was smooth.  Cons:  I missed yogurt in the morning.  It turns out nuts irritated my digestive system BIG time.

Of course there was a domino effect.  The house was running more smoothly and everyone was generally happier.  

After my derail I had a newfound awareness of how food affected me.  I was told I would experience this and I am sure it would be even more pronounced if I made it the whole thirty days.  It wasn’t until I slowly added back in the gains and dairy that I saw the massive difference.  

Here’s what happened, off the top of my head. 

Aden:  Skin flared up.  Digestive issues returned (bloody stools).  Generally more irritable (hard to see since he is a super happy little guy, but we noticed).  

Myself:  Tired and less productive.  Irritable.  Joints have stiffened up.  Digestive issues.  Bloated feeling.  Connecting less with nature.  Never feeling satisfied by the food I eat.  

Am I going to try it again…you betcha!

Whole30 Day 9

I skipped blogging my progress over the weekend and I’d like to come clean right off the bat.  Cover your eyes and ears if your under age.  I had Sex With My Pants On!  Not really, but as far as the Whole30 is concerned I did.  I have mentioned it before, the purpose of the Whole30 is not just about your diet.  It is also about changing your mindset regarding food.  Even though there are approved foods, your not supposed to combine them to re-create a non-approved treat.  The Whole30 refers to this as Sex With Your Pants On.  I will now attempt to plead my case.  

For as long as I can remember chocolate has been a staple in my diet.  I’ll take it anyway I can get it.  In fact as a young child the school called my parents out of concern over my chocolate addiction.  While receiving a group lesson on not talking to strangers, even if they offered you ice cream, I still wanted to know if it was chocolate before I gave my answer.  Of course they said yes and I failed the stranger danger lesson.  I have a chocolate addiction in it’s purest form and it’s thirty something years strong.  

I was SO good this weekend, and ALL last week really.  I was proud of myself for completing an entire week of the Whole30.  Grains and dairy were a breeze to give up.  I wanted to celebrate my accomplishments.  In our culture, celebration often involves food.  This has been one of the challenges I face with my children’s disease.  This weekend it was my challenge too.  Technically my rendezvous with chocolate was from the approved list, and I know I saved myself from a far worse Whole30 crime.  Here is how it all unfolded. 

Friday night, our village kicked off the annual festival.  A parade closed down main street and kids were swarming the coolest place in town, “My Toy Shop”.  They had balloons, a craft table, lemonade, and cotton candy.  I turned my head away from the forbidden fruit, but “The Gingerbread Man” was right next door!  I resisted and moved on.  Then out of no where a tractor drives right up main street towing a full on band! They parked in front of the “The Mill Tavern” to play for the patrons.  It would have been so easy to enjoy a “Mill Street Organic” after the show, but I resisted. 

Saturday the festivities continued.  It was thirty degree weather, the streets were filled with bouncy castles and every vendor you can imagine.  Everywhere I turned there was ice cream, cotton candy, wood fire pizzas…  I carried the baby as I pushed thing one and thing two the whole way in our stroller.  Thing two was having an extreme meltdown the whole way home.  There had to be a cool reward at the end, but our pool was broken.  Our oldest had his first sleep over at our house.  Hubs made them a campfire and s’mores.  I retreated to take care of the baby and settle in for the night. 

Sunday we had a family event.  My uncle was about to be surprised with his ninetieth birthday bash!  I knew there was bound to be great food and cake.  Not to worry, I was prepared how to handle food during social engagements.  I would make myself a meal in advance so I wasn’t starving when we got there.  That’s when it happened.  I opened the cabinet and spotted the pure cocoa powder, technically Whole30 approved for flavouring.  Then I saw pure hazelnut butter, my favourite new snack poured over fresh fruit.  Bananas were in front of my face so I mixed and mashed my ingredients together.  I added a dash of pure coconut milk and voila, I had a nutritious chocolate pudding like snack!  The kids and I loved it.  I felt triumphant!  The feeling I got today when I turned to the same concoction told me beyond any doubt that I was no longer flirting with my addiction.  I had gone “all, the, way”. 

Lesson of the day: I am human.  The Whole30 is only thirty days and I CAN do this.  Until my next blog I vow to learn the importance of changing my mindset and have no more “Sex With My Pants On”.  

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Day 5 Breakfast was delicious!  Scrambled eggs & chives mixed with left over baked root vegetables.  Also pictured, some of our cloth diaper stash.  A large rotation preserves your stash, especially with two in cloth.  We can sell them and make 70-85% of our initial investment back.  I speak from experience as we already sold off our smaller cloth that number four has outgrown.  I prefer to see these cute prints and colours on a bum than disposables.  How about you?

Whole30 Day 5

I feel like a well oiled machine! My skin is changing, I looked pale & lifeless in comparison to my skin today. Even though I started my day feeling this fantastic, I did have a minor derailment. Lesson of the day, don’t skip re-fuelling yourself every 3 hours! Old me snuck in until I rebalanced myself. It wasn’t pretty, but it was easily rectified.

Our eating habits are not the only thing that changed when our children were diagnosed with their “allergies”. I use that term loosely because FPIES is similar to an allergy, and more people are familiar with the term allergies than FPIES. We also journeyed into the world of cloth diapering. After years of skin irritation from disposables, mastering the art of cloth diapering was life changing!

I won’t bore you with too many details but our start was much like yesterday’s post with the wading versus jumping in comparison. After trial and error we took a break before giving it another go. Diapers have changed since the flannel cloth my mother pinned on my bottom. Choosing a system can be overwhelming. Wanting to reduce our carbon foot print, the second time around we narrowed our options to Canadian made with natural fibres.

Once we choose the best brands for our needs (AppleCheeks, Omaiki, AMP) and figured out a good washing routine (The Cloth Diaper Asylum) we finally jumped right in and never looked back. Saving money in the long run, reducing landfill waste and healing our babies skin all at the same time just makes sense. An added bonus (you can’t do with disposables) is properly cared for used diapers retain their value. In some cases you can even sell them for above retail if it’s a discontinued print!

This leads me to the next exciting thing that’s happening around here. Number three is potty training! Time to de-stash half our cloth diapers. We usually go straight to regular underpants but this little bird is having a trickier time than the others, so trainers it is. I picked out a few from one of my preferred brands at Lil’Monkey Cheeks (an online, lovely mama owned, Eco-Parenting store).  They arrived last night and I am prepping them as I write this.  I  can’t wait to get them on the bum!

Whole30 Day 4

Day four was such a great day.  Grand-Maman et Grand-Papa came over for the morning and took my little birds to the park to play.  From the looks of these pictures, they had a blast.  The free time allowed me to catch up on a few things at home too!  

While waiting for hubs to return from work, my little birds and I took an evening stroll to our local library.   We are so lucky to be a stone throw away from this adorable and free, fully featured facility.  On our way we spotted a beautiful red fox along the river’s edge.  This was my second red fox sighting since moving here two years ago.  The first time it quietly and gracefully breezed through our yard to the ravine across the road.  On our way home I stopped to appreciate the progress we are making as we bring our once abandoned nest back to life.  

I hope you enjoy the photos of our day without photos of food, as we mostly ate leftovers and repeats.  I am surprised I haven’t had a single craving for grains or dairy.  Another new benefit is my posture has improved.  I can’t explain it but I am pleased about it.  

I have had a few people comment on how I would be able to do the Whole30 or even just Paleo.  I am only on day four but something that makes my experience unique is my children.  I started on this journey because they medically can not eat grains.  Emotionally speaking I have already gone through the grieving process to let go of foods I have loved and was raised on.  I have also gone through the panic over what we could eat and how to handle social situations.  With doctors and allergist knowing little about this rare disease, a Paleo lifestyle has really been our saving grace.  The Paleo diet is essentially a grain free diet.  We are not living Paleo alone, the survival of our human race is based on it.

Despite having my children as motivation to go grain free, I was still unable to completely kick grains to the curb.  I decided to do the Whole30 to end my grain addiction once and for all.  I’ll compare it to slowly wading my way into water versus jumping right in, the Whole30 is me finally jumping in. Another thing that has helped is my mindset.  This next paragraph is going to sound a little “out there” but try to keep an open mind.  

In preparation for the birth of my fourth child I read a book by Midwife Guru, Ina May Gaskin.  In it she describes envisioning yourself in a primal state or as a wild animal for childbirth.  I didn’t give it much thought at the time I was reading, in fact I thought this lady was a nut!   A day later her words came in handy.  I woke up in the middle of the night during a snow storm and knew a little bird was coming fast.  Upon arrival to our local hospital, there were several emergencies occurring at the same time.  Being a Neonatal Intensive Care Nurse I was in tune to what was happening in the maternity ward.   I instructed the night staff not to worry about me, that I would tell them if I was crowning.  As lives were being saved I was quickly transitioning in triage.  I needed a  coping mechanism and out of no where I started envisioning myself as a lioness about to deliver a cub.  Ina May’s words of wisdom worked like magic!  Of course it was all rather comical to both hubs and myself.  This led to my second lesson that night, that a light heart also helps ease the pain of transition.  

I am consciously using the same method to change my eating habits.  Only this time I imagine myself as a primal human nourishing my body with a primal diet.  It’s about changing my mindset, once I understood that, I was ready for the Whole30.  

Whole30 Day 3:  Busy Day.  Littles to the dentist & school BBQ!  Turns out on my last Blog I had a flu & illness was not diet related.  Was feeling great the next morning (sadly hubs wasn’t).  Also, snacks missing from photographs: Banana, AppleSauce with Walnuts, Pears with Hazelnut Butter.  Yes, it was a very nutty day!   

Day 2 - Whole30

Before I forget I want to start by adding to yesterdays post.   I needed a snack when I finally went to bed very late last night (normal for me).  If your keeping track, add a banana to my day one menu.  Worked like a charm and I was out like a light.  

On to day two.  I woke up feeling fabulous again despite a short night sleep.  I was even satisfied with just one cup of coffee instead of my usual two and enjoyed the coconut milk with it.  

My head is so clear, I look back at all the days before this and wonder who on earth I was, no joke.  I frequently run short on patience with my children at some point or another. The last 24-48 hours I haven’t felt a single hint of a mood swing.  After another productive start to the day I made time for a walk with the kids to watch the ducks in the river.  They thought it was a great adventure and we had nice teaching moments by taking in and identifying nature around us.  We also had lunch, picnic style in the backyard.  One sleepy head couldn’t make it through lunch without a meltdown and had some potty training issues, didn’t phase me at all.

We all came in for a little quiet time and then BOOM.  I think I started detoxing.  It began with a nap face first on the floor with our dogs.  Followed by a “hang over” and topped it all off with an evening headache/lightheaded double punch.  I read over the fine print again and reached out to my group.   Apparently this is normal.  Tomorrow I will add sweet potato to help me transition.

Todays menu (besides water, water, water…)

Breakfast:  1 coffee with pure coconut milk, 1 large grapefruit, 3 poached eggs, with a dot of coconut oil, salt & pepper.  

Snack: Fresh mixed berries with pure hazelnut butter drizzled (ok poured) over top.  

Lunch:  Avocado, cucumber, bell pepper & tomato on a bed of greens.  Olive oil, salt, pepper & fresh squeezed lemon juice to taste.  

Snack: Banana

Dinner:  Carbonated water, homemade tomato & meant sauce with spaghetti squash (one of our favourite meals), spinach & berry salad with lemon/olive oil dressing. 

Snack:  Banana