Posted by Suzanne - February 25th, 2014

posted by Suzanne

Remember this?



That surgery scared the bejeezus out of us.  Oy vey!  Then were told that we may need to go through this again when her adult molars come through (or try to come through I should say).  After the surgery we were catapulted back to the gastroenterology clinic because of  1.  Her weight was low. 2. The dentist recommended a diet of soft foods AND low sugar.  3.  The dentist also thought a NG tube would be needed for Erin to gain weight.

It was a hard transition to incorporate this type of diet at home.  Then packing a lunch for school… way more difficult.  Unlike other kids, Erin refuses to eat PB&J sandwiches every day. Then there are peanut allergies in the classroom…  Oh, and she doesn’t like peanut butter alternatives…

I went on a hunt and found that “to-go” toddler food has evolved greatly from when Erin was two years old.  I bought one of everything that sounded yummy.




For most of her eight years she has had a normal diet and expects some sugar and salt in food.  Well, these “to-go” foodstuffs didn’t go over too well.  The lack of flavor was really bad.  Although I did doctor up the Ella’s Thai Vegetable with a touch of Sambal Oelek, a smear of ginger, and salt… and Erin ate all of it.  A huge hit out of this bunch were the yogurt dips.  Unfortunately because she was embarrassed because it was toddler food, Erin was unwilling to eat these at school (and I totally understood).  So we stuck to unsweetened applesauce, slices of deli meat (salami was very popular in our house at this time), and some fruit (she looooves Cuties).

Then we attended the 25th Anniversary FOP Gathering in November and we met the fabulous Dr. Clive Friedman (FOP expert in dentistry).  In less than two minutes he negated the diet we worked so hard on… and I could not have been happier!   He examined Erin’s teeth and advised me on how to keep her teeth healthy without limiting her diet.



I was totally relieved to add sugar back into her diet and went to small bites instead of soft foods.  Somewhere along the way, Erin had a swallowing study and the occupational therapist said the threat of choking wasn’t too high.  Her head/neck tilt slightly forward which helps prevent food from rushing down her throat.


Feeling refreshed and optimistic again we sailed through the holidays with little fear.  Then the stomach pains came back.  One evening we made our way to Seattle Children’s Hospital ER…



Even though we suspected FOP was the culprit, we wanted to rule out any non-FOP ailments.  No kidney stones, no bladder infection, no constipation…  It is frustrating when we (the parents) know more than the doctors do.  So when the attending physician called genetics, I knew they did not talk to our geneticist.  The discharge paperwork said to administer Prednisone for pain.  First, we don’t give Prednisone for abdominal swellings.  Second, there were no swellings on her belly. Third, I was so dumbfounded regarding the pain I eventually did give her around of Prednisone a few days later but it was my Hail Mary…and the pain continued.

A week later we got in to see the GI doc.  Erin was describing pain around the stomach and pain in her heart.  We left the appointment with absolutely no answers.  Over a period of a few days cardiology, genetics, other gastroenterologists looked over Erin’s case and concluded with, “Let’s try Zantac.”  Lo and behold, one of the problems Erin was having was heartburn.  The x-rays did show two cloudy spots near the location of Erin’s stomach pain.  We concluded it was her lower ribcage was flaring-up and causing discomfort after she ate.

But then one more issue was discovered.

Erin’s Z-score for weight dropped to 7.9% (which is really low).

At this point I am convinced a NG tube is required.  But we are trying one more attempt.

Now I am piling on calories to every food, snack, and meal she eats.  We are trying this…



This is a powder supplement that adds calories to practically any food.  I am adding it to gravies, tuna salad, cereal, ketchup, and the dreaded applesauce (which comes back untouched in her lunch bag).  I can add this to almost everything.  I just need to do the mixing when she isn’t looking.

Now her lunch bag is full of scrumdelicious foods.  Today’s lunch was…



She got a half cheese bagel with strawberry cream cheese, a mini-chocolate chip muffin, strawberries AND whipped cream, and a few other extras (cereal/protein bars).  The nutritionist wants Erin to try the Ensure Breeze but so far Erin doesn’t want to try it.  I might just have to bribe her for her to drink it.

Oh…and Erin’s belly aches are not as severe or frequent as they were a month ago.  Let’s hope they don’t come back.

2 Responses to “Scrumdelicious”

  1. Karen Karen says:

    Suzanne, we have been buying the Kellogg’s Special K “morning shakes”, which are described as a protein beverage (190 calories per 296 ml bottle). Miranda quite likes these – particularly the chocolate flavour (surprise surprise). Maybe Erin would like those??

  2. Suzanne Suzanne says:

    She drinks a lot of Carnation Instant Breakfast (GI recommended). That is definitely her go-to shake. If I can get her to drink what the GI nutritionist gave us, I can get it covered through our medical insurance. But I will definitely look into that brand.

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