Jonesing for a Bagel

July 8.  It started out like so many other days.  Grendel woke up, once again, complaining of a tummy ache.  She had been complaining of a tummy ache, almost daily, since February.

Yes, this is literally how she announces that she is sick.  She has a knack for dramatic flair.

When she first told me that her tummy hurt I figured that she had picked up a bug, given that it was February and she attended a germ factory - aka nursery school - twice a week.  After 2 weeks she was still having tummy aches, but she had developed no other classic illness symptoms.  I scheduled an appointment with the pediatrician who thought Grendel might be constipated.  Her poop was normal consistency, the baby bear of poop: not too hard, not too soft, just right.  But kids, especially when potty training, can get a little backed up internally while having normal looking poops.  We decided to feed Grendel prunes.

She enjoyed this treatment plan.  She ate handful after handful for over a week.  She continued to poop.  Her tummy still hurt.  The next step was to treat her more aggressively for reflux.  She was already taking an H2 blocker, so the pediatrician decided to try switching her to a proton pump inhibitor (PPI).  Unfortunately, after a couple of weeks on the PPI she had not improved.

Since we had knocked out the common causes of childhood tummy aches, it was time to seek the advice of specialists.  First, we went to see an allergist.  I thought she might be displaying allergic GI symptoms.  However, Grendel tested negative for all common, and some uncommon, allergens.  Next, we scheduled an appointment with gastroenterology.  Unfortunately, the first available appointment was over a month later, an eternity when your child feels bad and you don't know how to make them feel better.  Over the next 3 weeks she continued to complain of tummy aches several times a day.  I kept a food diary but could find no common links between what she ate and when she mentioned the tummy aches.  I asked her about the pain, but it can be difficult getting an accurate description of symptoms from a 3 year old.



Me: When does your tummy hurt?
Grendel: All the time.
Me: Did it hurt this morning?
Grendel: No.
Me: Does it hurt now?
Grendel: Yes.
Me: Where does it hurt?
Grendel: Here. (She says while making a huge circle with her hand all around her torso.)


Based on Grendel's history of having a milk allergy as an infant, her recent complaints of tummy pains, her regurgitation, and her negative allergy testing, we decided to do a trial off of dairy in case she was dairy intolerant.  A person will only test positive in a traditional allergy scratch test if they are experiencing an IgE antibody mediated immune response.  This is the type of reaction, for example, that might make a person with a peanut allergy go into anaphylaxis.  There are, however, five classes of antibodies.  Sometimes a person experiences an immune reaction against a food that is not caused by IgE (and would not show up on an allergy test), but by IgA or IgG.  Additionally, there are other non-immune mediated reactions that involve no antibodies but leave you feeling crummy just the same.  These are not allergies, but rather intolerances.

I sat Grendel down and told her she would be going dairy free.

"Cow's milk" is an important distinction as "milk" in our house is almond milk.

She wasn't thrilled with this idea, especially once she started asking which foods contained milk (cookies, donuts, chocolate milk, cake, etc), but her tummy felt bad enough that she was willing to go along with the plan.  After just a week of being dairy free, she went a few days without having (or at least complaining of) a tummy ache.  Hooray!  She was still experiencing some tummy pain, but instead of complaining of tummy aches several times a day she was only mentioning it every other day or so.  Per the recommendation of the pediatric gastroenterologist, we did a dairy challenge after she had been dairy free for a month.  It was awful!  Her tummy ache returned in full force.

We were on the right track, but she was still symptomatic.  I knew the next step, but I was dreading it.  I knew another likely food protein that might be bothering her was gluten.  But avoiding gluten, especially when you are a vegetarian who already can't have dairy, is no simple task.  I continued hoping that her tummy ache was an artifact of damage that had accumulated in her gut from dairy exposure, but after a few more weeks of being dairy free, and showing no more improvement, I knew it was time to make more changes.

And this brings us back to June 8.  It was a Wednesday, and Grendel woke up talking about her tummy hurting.  By mid-morning I had made up my mind: we were going gluten free.  She had been suffering for so long that I wanted to cut all gluten out of her diet as quickly as possible to let the healing begin, if that was what was bothering her.  What I didn't realize when I cut gluten out of her diet is that some kids metabolize gluten into a morphine-like protein.  These kids become addicted to gluten.  So, if you remove gluten from their diet, they go through opioid withdrawal.  (When we met with a developmental pediatrician two weeks ago I found out that they recommend gradually removing gluten over the course of a month to prevent withdrawal.  Whoops!)  This withdrawal can last anywhere from 4-6 weeks.

Of course, I chose to make her gluten free the day before we left for an overnight trip to a lodge in the middle of nowhere.  I thought I was prepared for our trip: I packed all of the food we would need for our 36 hours away from home.  However, I was unprepared for Gwen taking her alter ego of Grendel to an entirely new level.  When we arrived at the lodge, Hobbit needed to take a nap.  Since we only had a single hotel room, and not a suite, Hobbit was too distracted to nap in a pack and play. In order to get her to nap, I had to pace with her in a front carrier, and in order to keep Grendel entertained and quiet, I let her watch the TV in the room.

After a 45 minute nap Hobbit woke up, and I had the crazy idea that Gwen would enjoy leaving the room to go swimming at one of the two pools at the lodge or at the nearby beach.  I was wrong.  I turned off the TV and woke up the monster.

Grendel started screaming.  Being in a hotel room, I thought our neighbors might be unhappy with a shrieking 3 year old as a neighbor, so I did the only thing I could think of and tried to take her for a walk.  We walked in the lobby.  We walked outside by the pool.  We walked past the game room.  We walked and she continued to hit decibels that I did not know were possible from someone so small.  I knew Dr. Dad's conference was letting out and thought it would be good to have a reinforcement.  Hobbit, Grendel, and I headed back into the lodge and hung out outside of the conference room.  I tried to quiet Grendel, but it just infuriated her even more.  One of Dr. Dad's colleagues could hear the commotion outside of the conference room and asked him:

At that moment, Dr. Dad was in a state of blissful ignorance feeling the euphoric effect of spending the afternoon talking to other grown-ups.  Of course that wasn't his banshee in the lobby!  But then the conference room doors opened and Dr. Dad was greeted with this:

I naively believed that seeing daddy would make everything right again, we would be able to move past the meltdown of the previous hour, and could end our evening in the swimming pool. Wrong, wrong, and wrong.  Seeing daddy resulted in more of a meltdown (Finally! Someone who might understand the injustice of mommy turning off the TV!).  The meltdown continued for yet another hour.  We put her in the car since we couldn't return to our room and we hoped that the beach would turn her mood around.  It didn't.

Facebook aside: a parenting sanity PSA. Don't believe all images you see on Facebook. We tend to put our best, happiest selves on Facebook while omitting the rest. This is the picture that I posted to Facebook to show everyone what our vacay was like.

Hobbit and I had a lovely time on the beach as Grendel was melting down

After two hours of screaming, kicking, crying, and being a monster, she finally lost steam.  We got back to our hotel room just in time for both kids to go to bed.

To complicate matters even more, Grendel has pretty consistently woken up daily at 4 or 5 am since she was about 9 or 10 months old.  We invested in one of those color-changing clocks when she was almost 2 years old because I couldn't handle waking up that early anymore.  Since then, she has woken up at her normal early bird hour and then has spent the next 2 hours staring at her clock until it changes colors from blue to orange signaling her that she is allowed to leave her room.  But when we sleep in the same room as her, like we had to do at the lodge, this happens:

All this to say, cutting gluten out of her diet the day before leaving for a short vacation was not a great idea.  Even worse was the fact that I made our gluten junkie go off of her drug of choice cold turkey, thereby triggering withdrawal.  But, when we were driving from the lodge to my in-laws house, a short 90-minute trip, something magical happened.  Grendel fell asleep for her first nap in months!  I sat in my in-laws driveway with her asleep in her car seat for almost 2 hours as she napped.  We have literally gone on 5 hour car trips during nap time where she has stayed awake the entire trip.  Generally, she will only sleep in her room with room darkening blinds and a sound machine turned up to the highest volume.  The next morning there was more magic as she didn't wake up until 5:30!!!!  Then, on the way home from my in-laws house she fell asleep within 5 minutes of pulling out of their driveway and slept for over an hour!!!!!  Since then her sleep has continued to improve.  It is crazy to think that gluten could affect her in that way, but now, 6 weeks later, she wakes up daily between 6 and 7 and gets about 2 more hours of sleep in each 24 hour period than she was getting while on gluten.  Once we cut out the gluten, she started responding to sleep like a normal 3 year old.

I don't know if I want to cry tears of frustration that we could have been sleeping well for the past 3 years had we just cut gluten out from the start, or tears of joy that we finally have our answer and can sleep past 6.  Either way, my mascara is running, but it is no longer running over dark under-eye circles.

The Main Players

Good Morning, Sara.  Your mission, should you choose to accept it, is to raise two nutritionally complicated children...

...Hah! Forget that.  You have no choice.  They are your children.  Of course you are going to accept this mission.  It comes with the territory of being Mom.

Here are the main players in your mission:

GWENDOLYN

CODE NAME: GRENDEL

She may look cute and innocent, but cross her and you awake the monster within.  Her given name is Gwendolyn, but she quickly earned the designation Grendel (on bad days, Grendelyn on good days; for a quick overview of her literary namesake's character analysis, click here) due to her temperament as a baby.  The name applied well as a toddler and continues to hold true as a preschooler.  

Grendel has struggled with GI issues her entire life.  Beginning as an infant, she had severe reflux.  While some kids are referred to as happy spitters, she was an unhappy, or, more accurately, furious, spitter.  She also had chronic diarrhea, bleeding diaper rash, and colic that lasted well beyond the usual 3 to 4 month timeframe for colic.  At the age of 3, when baby sister (Code Name: Hobbit) displayed similar symptoms that were relieved when mom went on a Total Elimination Diet, it was determined that she had undiagnosed allergies as an infant to allergens that were passed through mom's breastmilk.

Grendel's spitting continued through toddlerhood and still occurs as a preschooler.  For the past 1.5 years she has thrown up into the back of her mouth roughly 20-30 times a day.  More recently, during the past 5 months, she has experienced daily tummy aches.  A pediatric GI specialist has given her a presumptive diagnosis of eosinophilic esophagitis.  She takes a proton pump inhibitor once daily to control her GI symptoms and protect her esophagus from acid damage.

Furthermore, Grendel was recently diagnosed with Sensory Processing Disorder (SPD).  She receives Occupational Therapy once a week to help her to manage her senses and to better integrate sensory information (more on this in future posts).

Mom has been drastically changing Grendel's diet in recent months in hopes of relieving both the GI discomfort and the SPD symptoms.  Grendel, who has been a vegetarian since birth, is now gluten-free and dairy-free.  Mom is continuing to modify her diet by cutting out all artificial colors and flavors and by limiting sugar intake to one "sometimes food" a day.

FIONA

CODE NAME: HOBBIT

Hobbit experiencing her first taste of solid food at 6 months

Hobbit earned her code name from her tendency to eat breakfast, second breakfast, eleveses, luncheon, afternoon tea, dinner, supper, and several meals throughout the night.  Born at 36 weeks, and weighing in at a whopping 5 lbs 10 oz, she used her love of mommy milk to triple her birth weight by approximately 7 months.

Like big sister, Grendel, she has had GI problems from the start.  She developed meningitis at birth landing herself in the NICU for two weeks for administration of IV antibiotics.  The combination of illness and Mom's overactive letdown resulted in complete refusal to breastfeed directly from Mom.  Mom pumped exclusively and continued to work with Hobbit.  After 6 weeks, Hobbit had pity on Mom and began breastfeeding directly.

The feeding difficulties with Hobbit did not stop there.  Hobbit developed diarrhea, colic, reflux that was unresponsive to the maximum dose of Zantac, and a bleeding diaper rash.  Mom was able to put together several clues that led her to believe that Hobbit was reacting to allergens in breastmilk.

1. Hobbit was diagnosed with failure to thrive while in the NICU and a soy formula fortifier was added to Mom's breastmilk.  Hobbit's belly bloated, the NICU staff were worried her intestines had stopped moving, and the fortifier was discontinued.  She still struggled to gain weight.  At discharge she was not yet back to her birthweight and the doctors recommended she go home on the same soy formula fortifier.  By the next morning her belly was bloated again.  The pediatrician agreed that the fortifier should, yet again, be discontinued.  
2. Hobbit was spitting up more at home than she had been in the NICU.  The pediatrician recommended adding rice cereal to her bottles of breastmilk to help keep the milk down since she still was not gaining weight.  After adding rice, Hobbit began spitting up even more and drinking less.  Mom discontinued the rice cereal.  Mom read the ingredients on the rice cereal and realized that it also contained soy.
3. Mom thought about changes that had taken place in her own diet since returning home that might result in increased spitting and realized that, due to her vegetarian diet, she had begun eating more soy at home than she had when eating from the hospital cafeteria.  

Step 1: Mom removed soy from her diet.

The pediatrician informed mom that a soy intolerance without a dairy intolerance was uncommon, and within a couple of weeks Hobbit had developed mucous filled stools.

Step 2: Mom removed dairy from her diet.

Hobbit improved drastically and began responding to Zantac.  However, she was still obviously suffering.  Mom could not find any patterns in food consumed that might be causing Hobbit's symptoms, so with the support and encouragement of the pediatrician and pediatric GI specialist chose to go on a Total Elimination Diet (TED).

Step 3: Mom went on a TED diet.

A TED diet works by eliminating all of the common allergens and reduces mom's diet down to some of the least allergenic foods from each food group.  Mom subsisted off of squash, potatoes, pears, rice, and beans (the actual TED diet calls for turkey, but mom has been a vegetarian for the last 5 years) for a couple of months and then was able to add foods back into her diet once every 4-7 days as Hobbit enjoyed each new solid food.  Essentially, mom expanded her diet as if she were a baby.

Hobbit did well for months.  As long as mom stuck to this diet and dosed hobbit with Zantac, Hobbit was relatively happy.  Then, at 9 months, Hobbit had two episodes, separated by 4 days, in which she vomited 15-25 times over the course of 3 hours.  During the second episode she began vomiting bile and was rushed to the hospital.  Doctors suspected a bowel obstruction, but all imaging studies came back negative, so Hobbit was sent home with instructions to bring her back if this happened again. About 4 weeks later it happened again.  She was taken to the ER, the doctors suspected malrotation, an x-ray was performed, but it was once again negative.  An upper GI series was ordered to determine if there was an anatomical abnormality, but it was negative.

It is now believed that Hobbit has Cyclic Vomiting Syndrome (CVS).  CVS is characterized by episodes of vomiting that are unexplained in origin and that recur with the same intensity and length of time. She will be seen by a pediatric GI specialist soon to rule out other possibilities and determine if this is, indeed, the cause of her vomiting episodes.  If she does have CVS, mom and Dr. Dad will have to work to determine Hobbit's triggers to decrease vomiting occurrence.

HUBBY

CODE NAME: DR. DAD

Dr. Dad will be your team member, in this mission, and your greatest support.  He is your husband and your rock.  He goes along with your parenting and nutritional schemes, however crazy they may seem.  He is the Ethel to your Lucy.

Dr. Dad is an anesthesiologist by day and super dad by night.  He is the very best at reading books, giving baths, making obstacle courses, and developing death defying stunts in a game that he and Grendel like to call Cirque Du Bébé.  He also has endless patience and jumps right in to help with the girls as soon as he gets home providing you a much needed break.

You and Dr. Dad will have to combine your medical knowledge and parenting abilities to develop diet plans and parenting strategies that will help you to raise healthy, happy, and confident little girls.



YOU
CODE NAME: MOM

You earned a Master's Degree in Medical Dietetics after marrying Dr. Dad.  You completed the coursework for your degree before Grendel was born and your Master's project after she was born.  You have not officially worked in the field of dietetics (outside of your internship), but you have earned substantial dietetics street smarts during the past 3.5 years of raising two children.  You love staying at home with Grendel and Hobbit, and they are keeping your nutrition skills sharp!  You have not yet taken your Registered Dietitian credentialing exam, but you are planning on completing that soon.  In the meantime, you are learning more about nutrition each and every day, both from your natural gravitation toward nutrition information and your endless pursuit of relieving the symptoms of your two little girls while feeding them healthy diets.


So, yeah, you've accepted this mission.  And you have the greatest team ever.