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© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.
1
Innovation Apprentice® Negotiation StoriesPresentsZebra Discovery
This is a story of our negotiations with the medical industry and our discovery of 
daughter’s food
allergies and related difficulties.Our daughter had always had some issues with spitting up. This happened when she was a baby,so as it continued beyond being an infant
we didn’t think too much of it. This would often take
place during meals when she was eating thick foods like oatmeal or peanut butter, so we wouldsimply clean her, clean her highchair, and continue on with our meal. This was in part because
we didn’t want to
draw attention to it and make her feel badly about it.When she was about 18 months old, we brought her to the local pediatric gastroenterologist (GI).He recommended that we treat her for reflux. When asked if she had reflux, he stated that he
didn’t know. We stated our reluctance to treat her for something which we didn’t know
she had.
He didn’t respond to this concern.
Knowing what we know now, he could have simply said thatthe test for reflux is extremely intrusive and difficult and the recommended way to address theissue is to treat as if the child has reflux and see if the treatment helps. If not, he would at leastbe able to rule out reflux. This would have been enough to start us on the right course. Withoutthis information, however, we simply did nothing. End result: Deadlock and lost time. As wenever returned, he lost a patient and our daughter went without appropriate treatment for over ayear.When she was 2 ½ years old, we became aware of a specialist called a swallow consultant. Wehad never heard of such a field. This was an individual who was highly trained with regard tofeeding issues and swallowing in particular. We brought her to see the swallow consultant assoon as we could. Her first question was,
“Have medical issues been ruled out?” When we
 described our experience with the local GI, she strongly encouraged us to have her examined byan expert pediatric GI associated with her hospital. In the meantime, she gave us somesuggestions to help. Next, we brought our daughter to see an associate of the recommendeddoctor right away. This was our first step in the right direction.Dr. S took a careful history which included a family history of Celiac (an allergy) and orderedblood work to test for Celiac as well as other food allergies. The blood work came back somewhat positive for Celiac and positive for allergies to milk and eggs. He explained that itwas not definitive that she had Celiac and the best way to tell was to do an endoscopy and biopsyher small bowels. This involved a general anesthesia and was a difficult experience as parents,but we had to discover what was wrong in order to get her better. The biopsy results were
 
 
© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.
2surprising and at first difficult to understand as parents. Our daughter did not have Celiac. Whatshe had was a less common illness called Eosinophilic Esophagitis (EE), an inflamed esophagusdue to food sensitivity. Dr. S explained that the way to treat this was by avoiding certain foodproteins. He referred us to a few particular web sites where we could get reliable informationand scheduled an appointment to see us in two weeks.From our internet research we learned several things. It turns out that EE is a relatively new
illness and the medical community’s understanding of it is still quite incomplete.
It is ofteninitially missed because doctors are trained that when they are in the prairie and hear the soundof hoof beats to think horses, not zebras. For us, this meant that doctors often treat refluxwithout considering EE. Still there are many methods for treating EE and different methods areused by different doctors and sometimes different methods are used by the same doctor fordifferent patients. These methods include, but are not limited to:Elimination of major allergens such as milk, soy, wheat, eggs, and pork Allergy testing and elimination of foods tested positiveCorticosteroidsFeeding tubesAn elemental diet where the child ingests nothing but a medical food that contains aminoacids, but no proteins which may be allergicSome combination of the above.Disturbingly, we learned that if EE went untreated, individuals were at significant risk fordeveloping strictures in their esophagus and increased difficulty in swallowing.When we met with Dr. S we had about a million questions. Fortunately, he had many answers.He specifically wanted to meet with us face-to-face to discuss
our daughter’s
treatment planbecause he knew how difficult it would be to hear. He recommended that in addition to workingwith an allergist in a team approach, she be placed on the elemental diet. The only thing shecould have was this medical food, Neocate, and applesauce, an unlikely allergen. He was right.This was difficult to hear. He wanted us to stop feeding her food!! However, his logic wassound. This was a drastic measure, but it was the most effective way to determine to what shewas allergic. He explained that he knew it would be difficult, and that compliance was a majordifficulty with this approach, but after getting to know us as parents he saw that we could do thetough things that were necessary. We feel that part of the reason he believed we could handlethis was because we always put extra care into our dress for appointments with professionals.By emphasizing our own professional expertise, dressing the part, and asking pointed questions,our doctors tend to be more open to our involvement and role in the care of our family than if wedid not dress the part. Further, because of 
our daughter’s
young age and generally compliantpersonality, she was a good candidate for this treatment plan. The Neocate would not irritate heresophagus and would calm down the allergic reaction. We could confirm this with a futureendoscopy and if everything looked good, we would do food trials, adding one food ingredient ata time and have follow up endoscopies to confirm that foods that appeared non-allergic were notactually irritating her esophagus. We later developed a detailed plan of which foods we wouldtry and when. Although this plan involved a lot of vigilance, some internal struggles, lots of data, and more anesthesia
than you’d like to put in a young child, t
his seemed to be the best long-
 
 
© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.
3term strategy. Since we wanted a long-term cure rather than a temporary fix of symptoms, wechose to follow this path.Into this unknown prairie we embarked on this tumultuous adventure. At first, our daughter was
excited about her “special juice”
that the doctor had given her and her new cup. We really triedto frame it as positively as possible and had gone out with her to select a new cup and specialpitcher for mixing the juice. This was fine until she realized that was all she was getting. Thencame the tears. Hers
and Mom’s. Mom tried to keep hers private so as to avoid stressing
ourdaughter.
Eventually the tears stopped, but she wasn’t drinking nearly as much as was
 recommended for her age and size.Meanwhile, we had other issues. Our daughter
’s
Jewish grandmother and Italian babysitter wereexperiencing similar struggles as we were as parents. They are both intelligent women and thebabysitter is a pediatric nurse, so they understood the plan intellectually, but it was extremelyhard for them to adjust. Months after our immediate family had adjusted, they were still havingdifficulty. The babysitter tri
ed to explain, “I’m Italian. Food is how I show my love.”
While weempathized with her grandmother and babysitter, we were much more concerned withcompliance. We would think,
“It’s
unfortunate that this person is having a hard time with this,but are they following what needs to be done
?”
Make no mistake, compliance to these rulesapplied to everyone. Along those lines, we had zero-tolerance for criticism or comments thatmight make her feel bad about her food. Initially, her brother would make comments that theNeocate smelled, etc. We let him know in no uncertain terms that this was unacceptable and hewas welcome at the table only if he could avoid making these negative comments. The samewas true for extended family members, babysitters, teachers, etc. We could discuss this out of 
our daughter’s
hearing, but we did not want anyone saying in front of her how badly they felt forher. When they did discuss this, we tried to support them by showing how they were helping herto get better and by understanding their feelings. As for our daughter, she did not feel badly forherself. She had adjusted and was compliant. Whenever she would ask if she could have
something in particular, we would simply answer, “When the doctor says it is okay for you, y
ou
can have it.”
Because she trusted us and her doctors, she accepted this reality.As with many medical issues, we were dealing with several things at once. Our energy wasdivided between getting appointments with the proper specialists, ensuring that the properreferrals were in place for the insurance, obtaining the medical food and getting reimbursed,feeding our daughter, and coping with the questions and emotions of those around her.When we first embarked on the elemental
diet, the doctor’s o
ffice had provided a sheet withinstructions on how to get reimbursed for the Neocate. They noted that this was a challengingmulti-step process often requiring appeals. The first thing we did was to call our insurance andinquire how they wanted us to go about getting reimbursed. We followed these directions andordered the Neocate. Three months later, after talking to many insurance representatives, wewere finally told the proper way to order Neocate. It seems the insurance had a particularprovider called Apria Healthcare and we were supposed to order through them rather thandirectly through the manufacturer. Of course, we used their provider right away and theinsurance paid them directly. Now we still had to get reimbursed for the thousands of dollars we
 paid before we’d hear 
d of the provider, Apria Healthcare. Our early efforts at reimbursement
of 00

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