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Zebra Discovery

Zebra Discovery


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Published by James
A case study about the discovery and treatment of childhood food allergies.
A case study about the discovery and treatment of childhood food allergies.

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Published by: James on Jun 02, 2009
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Innovation Apprentice® Negotiation Stories Presents Zebra 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 would simply 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 that the test for reflux is extremely intrusive and difficult and the recommended way to address the issue is to treat as if the child has reflux and see if the treatment helps. If not, he would at least be able to rule out reflux. This would have been enough to start us on the right course. Without this information, however, we simply did nothing. End result: Deadlock and lost time. As we never returned, he lost a patient and our daughter went without appropriate treatment for over a year. When she was 2 ½ years old, we became aware of a specialist called a swallow consultant. We had never heard of such a field. This was an individual who was highly trained with regard to feeding issues and swallowing in particular. We brought her to see the swallow consultant as soon 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 by an expert pediatric GI associated with her hospital. In the meantime, she gave us some suggestions to help. Next, we brought our daughter to see an associate of the recommended doctor 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 ordered blood 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 it was not definitive that she had Celiac and the best way to tell was to do an endoscopy and biopsy her 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.


surprising and at first difficult to understand as parents. Our daughter did not have Celiac. What she had was a less common illness called Eosinophilic Esophagitis (EE), an inflamed esophagus due to food sensitivity. Dr. S explained that the way to treat this was by avoiding certain food proteins. He referred us to a few particular web sites where we could get reliable information and 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 often initially missed because doctors are trained that when they are in the prairie and hear the sound of hoof beats to think horses, not zebras. For us, this meant that doctors often treat reflux without considering EE. Still there are many methods for treating EE and different methods are used by different doctors and sometimes different methods are used by the same doctor for different 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 positive Corticosteroids Feeding tubes An elemental diet where the child ingests nothing but a medical food that contains amino acids, but no proteins which may be allergic Some combination of the above. Disturbingly, we learned that if EE went untreated, individuals were at significant risk for developing 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 plan because he knew how difficult it would be to hear. He recommended that in addition to working with an allergist in a team approach, she be placed on the elemental diet. The only thing she could 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 was sound. This was a drastic measure, but it was the most effective way to determine to what she was allergic. He explained that he knew it would be difficult, and that compliance was a major difficulty with this approach, but after getting to know us as parents he saw that we could do the tough things that were necessary. We feel that part of the reason he believed we could handle this 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 we did not dress the part. Further, because of our daughter’s young age and generally compliant personality, she was a good candidate for this treatment plan. The Neocate would not irritate her esophagus and would calm down the allergic reaction. We could confirm this with a future endoscopy and if everything looked good, we would do food trials, adding one food ingredient at a time and have follow up endoscopies to confirm that foods that appeared non-allergic were not actually irritating her esophagus. We later developed a detailed plan of which foods we would try 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, this seemed to be the best long-

© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.


term strategy. Since we wanted a long-term cure rather than a temporary fix of symptoms, we chose 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 tried to frame it as positively as possible and had gone out with her to select a new cup and special pitcher for mixing the juice. This was fine until she realized that was all she was getting. Then came the tears. Hers and Mom’s. Mom tried to keep hers private so as to avoid stressing our daughter. 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 were experiencing similar struggles as we were as parents. They are both intelligent women and the babysitter is a pediatric nurse, so they understood the plan intellectually, but it was extremely hard for them to adjust. Months after our immediate family had adjusted, they were still having difficulty. The babysitter tried to explain, “I’m Italian. Food is how I show my love.” While we empathized with her grandmother and babysitter, we were much more concerned with compliance. 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 rules applied to everyone. Along those lines, we had zero-tolerance for criticism or comments that might make her feel bad about her food. Initially, her brother would make comments that the Neocate smelled, etc. We let him know in no uncertain terms that this was unacceptable and he was welcome at the table only if he could avoid making these negative comments. The same was 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 for her. When they did discuss this, we tried to support them by showing how they were helping her to get better and by understanding their feelings. As for our daughter, she did not feel badly for herself. 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, you 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 was divided between getting appointments with the proper specialists, ensuring that the proper referrals 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 office had provided a sheet with instructions on how to get reimbursed for the Neocate. They noted that this was a challenging multi-step process often requiring appeals. The first thing we did was to call our insurance and inquire how they wanted us to go about getting reimbursed. We followed these directions and ordered the Neocate. Three months later, after talking to many insurance representatives, we were finally told the proper way to order Neocate. It seems the insurance had a particular provider called Apria Healthcare and we were supposed to order through them rather than directly through the manufacturer. Of course, we used their provider right away and the insurance paid them directly. Now we still had to get reimbursed for the thousands of dollars we paid before we’d heard of the provider, Apria Healthcare. Our early efforts at reimbursement

© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.


had been unsuccessful, but fortunately, we’d kept very good records including representatives talked to, their employee identification numbers, dates, and what was said. We submitted another claim stating all of this voluminous information and noting what was misinformation. We were eventually reimbursed in full. Not surprisingly, as we became more involved in the execution of the plan, we had additional questions. Since, Dr. S was out of the country, we wrote him an e-mail delineating our questions and sent it to his nurse to forward to him. We were surprised not to hear from him. We sent the e-mail again, but still did not get a response after weeks of waiting. What could we do? Our next appointment came and we tried to address our questions at that time. While we understood the difficulty of communicating while traveling, this excuse was unacceptable when it came to the care of our child. The time was approaching to begin food trials and we still had not gotten in to see an allergist. We decided to go well beyond local. We found that Children’s Hospital of Philadelphia (CHOP) was a center-of-excellence for EE. While CHOP was a good two hours from our home, we considered ourselves lucky that we were able to get there. Dr. Z, a CHOP allergist, helped us significantly. He tested her for allergies with a skin prick test and a patch test. The skin prick is where a small amount of a potential allergen is inserted under the skin and the doctors look at that spot to see if there is a reaction. The patch test helps determine reactions which may be delayed. For it, small amounts of food are placed on discs which are then taped onto the back for two days. Between these tests and the previous blood work, we determined to avoid milk, eggs, turkey and chicken. All other foods were options for food trials. He provided us with a list of foods broken down into categories by likelihood of allergy and showed us how to begin choosing foods for trials. About this time we also began to see a CHOP nutritionist, Ms. B, and a CHOP GI, Dr. A. We wanted to see a new nutritionist because the one from Dr. S’s office didn’t seem to know how to get more nutrition into her given that she would not drink enough Neocate. We had urged vitamins as a stopgap measure, but to the medical team the problem was a matter of getting her to drink enough Neocate. We thought we may as well meet with the CHOP GI as well because we were disappointed with Dr. S’s lack of responsiveness to our e-mails and we thought it would facilitate a team approach if everyone was from the same hospital. This was especially so since this hospital was known as one of the few centers-of-excellence for EE in the country. Ms. B recommended adding E028 to her diet. This was a medical food with the same nutrition as the Neocate, but it comes in orange flavored juice boxes. One flavor is a tremendous improvement over no flavor. Here we had to sift through some conflicting information. When we spoke with Dr. S about the E028, he was against it. Some were concerned that the factory that produces them also produces milk products to which our daughter was allergic. Now we had to resolve a conflict. How could we get enough nutrition into our daughter without introducing possible cross contaminants? We contacted the company that produces both Neocate and E028. They told us that any milk product is in a different part of the factory and that the products do not share a manufacturing line. We tried to evaluate this information.

© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.


This company specifically makes food for kids with severe allergies. We felt they were believable when they stated that they kept their manufacturing processes completely separate. Our daughter was not getting enough nutrition on Dr. S’s plan simply because she did not like the Neocate. The E028 was likely to be more desirable to our daughter. While we were careful at home, there was milk in our kitchen as well, so that if cross contamination was that big an issue, she was just as likely to have problems from our kitchen as we mixed the Neocate than from the premixed, individually sealed E028 juice boxes. We decided to go with the E028 and as Dr. S was against this, it facilitated our move to the CHOP GI, Dr. A. Our daughter did in fact prefer the E028 and drank much more of it. Further, the CHOP team was able to recommend a children’s multivitamin liquid that made us feel at least our daughter was getting the minimum. All of this required quite a bit of travel back and forth to Philadelphia. To help our daughter continue to have a positive attitude toward her health care, we always planned something fun during these trips. This often included a visit to the Franklin Institute, a very cool science center. Also, to minimize travel, we scheduled appointments to be back-to-back whenever possible. This often required an overnight stay, so we were sure to stay at a family friendly hotel with a pool, like the Sheraton or Hyatt hotel. Today, when our daughter talks about Philadelphia, it is not about endoscopies, doctors, or hospitals. Rather it is about the Liberty Bell, submarines, and the Franklin Institute. About two months after we began the elemental diet, our daughter had another endoscopy to check her esophagus. For this and all future biopsies, we ensured that the doctor performing the procedure had performed at least a hundred other endoscopies before we agreed to let him perform one on her. Thankfully, the biopsies showed that all eosinophils were gone. In other words, her esophagus was completely healed! Now we could begin food trials. The first food we tried was beyond disappointing. To do a food trial, you select one ingredient and give one serving of that daily for several days. Then you watch and note any symptoms. We started with potatoes. Our daughter was so happy to have french fries. We started with ones that had no ingredients beyond potatoes and oil. Unfortunately, after only four days, she started complaining of stomach pain. By day five, it was clear that potatoes were not for her. While this was particularly difficult, especially for Mom, Dad was able to find a positive reframe. Here we had learned something to avoid that we never would have learned had we done things differently. In this way we can keep her from future difficulty. This was a successful failure. After that, food trials went much better. She successfully ate sweet potatoes, grapes, banana, oatmeal, rice, fish, peanut butter, wheat, corn, carrots, and soy. When we tried beans she immediately developed a rash, so we stay away from those. Beef gave her chest pains and brought back the old difficulty swallowing thick foods, so we stay away from that. Pumpkin may have played a role in some chest pain, so just to be on the safe side we avoid that and

© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.


squash, a related food. All of her endoscopies have come back clean showing a healthy esophagus. Our daughter is now several years older and growing just as she should be. Recently she was tested for allergies using blood work and prick test and showed not allergic to eggs, chicken and turkey. While Dad was hesitant of more trials, Mom convinced him of the benefits over the difficulties. We did food trials for those items as well and she is now eating them happily. Due to a move, we have new doctors. They do not feel the need to do endoscopies as she is having no symptoms and that also sounds reasonable to us. We continue to avoid milk, potatoes, beef, beans, and pumpkin/squash. However, with the variety in American supermarkets today, we feel confident in our ability to provide a varied, healthy diet for her. Our daughter is now able to eat all of her food with no difficulty swallowing. She eats things she knows are good for her and helps to keep us on track. She will ask, “Did you wash your hands before you touched those chips, because I need to know if they are still friendly?” Whenever we go out she brings her own lunchbox full of “friendly” food and is happy to be included. This includes birthday parties where we utilize the innovative solution of putting a neon sticker on her shirt that says she is allergic. This helps to keep her from being pressured by well meaning adults to eat foods that she should not. Overall, we feel we have handled this difficult situation and these many negotiations well and have a happy, healthy, well adjusted young girl with a positive attitude toward herself and her “friendly” food.

© 2007 James Jones. All rights reserved. Innovation Apprentice® is a registered trademark of James Jones.


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