APFED Conference – EOS Connection 2012

Hey everyone!

I have been so busy since I last posted. I went to a healthy aging nutrition conference in June. I’ll post about that one later (this one takes precedence). And I moved! Finally. But it took me a month to get internet 🙂 So that’s part of why I haven’t updated.

But I’m writing today to say that I attended the highly anticipated APFED conference! It was the EOS Connection conference for the American Partnership for Eosinophilic Disorders, which (if you’ve been reading) I have, that is, EoE (Eosinophilic Esophagitis). It took place in San Diego, CA July 6-8, and consisted of people and parents of kids with eosinophilic disorders, along with a few doctors, psychologists, pathologists, and allergists. It was great hearing about the research and getting to meet others who are going through similar things as me.

So I’m going to be saying what I did at the conference and give summaries on the different speeches for those of you that missed it!

Friday, July 6, I boarded my flight in Denver to the gorgeous San Diego. I’m gonna skip over most of the boring stuff and the blah blah blah.
I met many of the teens at the social, along with some parents. Then it was time for the EOS Fundraising Walk to support the Hope on the Horizon Research Fund! The teens decided to put the APFED ribbon on our stomachs to spread awareness about feeding tubes, along with showing how different everyone was treated (some had TPN – parenteral nutrition which is like an IV either in the chest or back of upper arm, and others had G, J, or GJ tubes into the stomach or intestines). APFED and all of the members at the walk managed to raise over $16,000 for eosinophil research. Patricia Cummings got first for raising the most! I believe Kristyn Mitchell got 2nd! And Haley Royko, another “teen,” won third! She raised about $1,100! She made this by screen printing tees, which you’ll see in the picture. Anyways, the walk was really successful and everyone enjoyed it! The teens showing off their feeding tubes also showed some of the younger ones not to be embarrassed to have a tube.

Here are a few of the pictures from the walk!

Haley, Becca, Me (Michelle), Danielle, Aly, and Marguerite

Becca, Marguerite, Aly, Danielle, Me, Haley, Stephen

After the walk, APFED held a reception, celebrating their 10 year anniversary. They provided kid-friendly music with a dance floor, photobooth, allergy friendly food, snowcones, etc. It was great. I have to say that APFED did a great job providing food. It’s nice to be able to go to something like that and actually eat (for those that can). It was an awesome evening that made everyone pass out early.

The next morning, Saturday, July 7, the sessions began. The teens and children broke off into their sessions while the adults (and me) stayed for the education. So now I’m going to provide summaries of all of the speakers. Let me know if I miss something important or state something wrong (they moved VERY quickly).

Firstly, I’m going to state what eosinophils are for those of you who don’t know. Eosinophils are a type of white blood cell, or  a “granulocyte that is present at sites of allergic reactions and parasitic infections,” according to Marriam-Webster. To put it simple, when I eat food I’m allergic to, these white blood cells think that I’m eating something that will harm my body and go to my esophagus to attack (I have EoE – eosinophilic esophagitis). I will describe the symptoms of EGIDs later.

Disclaimer: I do not own this information, nor did I write it. Authors are listed and I can bring up the original study/source if needed.

Overview of Eosinophilic Gastrointestinal Disorders (EGIDs)
Seema Aceves, M.D., Ph.D. Associate Professor in the Division of Allergy, Immunology, Departments of Pediatrics and Medicine at the University of California San Diego
Director of Eosinophilic Gastrointestinal Disorders Clinic at Rady Children’s Hospital

• Defining EGIDs: How many eosinophils are too many? According to the updated consensus recommendations, “15 eosinophils/hpf (high power field) is considered a minimum threshold for a diagnosis of EoE.” During the Q&A session, they also stated that the levels to be considered an EGID in the other parts are as follows: stomach > 15-20, and that the colon varies: proximal > 50, distal > 25-30. The esophagus usually has very little if no eosinophils but will be higher in GERD or reflux, and will be found at the bottom of the esophagus. In the stomach and other parts, small amounts of eosinophils are present.
• When Did This All Begin? EGE (eosinophilic gastroenteritis) was first noted in 1977 by Dobbins et al. It was connected to dysphagia (difficulty swallowing) and strictures, along with EoE, in 1981 (Picus and Frank). More studies were done. In 1995, Kelly et al tried different treatments – PPI (proton pump inhibitors) unsuccessful, elemental formula, and corticosteroids; the latter two were successful. The number of studies on EoE has increased dramatically, from very few in the late 90’s, to over 160 in 2010.
• What is EoE? “Eosinophilic esophagitis represents a chronic, immune/antigen-mediated esophageal disease characterized clinically by symptoms related to esophageal dysfunction and histologically by eosinophil-predominant inflammation.” It is a clinicopathologic disease. Here they state that pathologically, biopsies must show eosinophil-predominant inflammation with >15 eosinophils/hpf, along with being isolated to the esophagus.
• Where Does EoE Live? There are 29 states with patients with EoE, with no reports of EoE in KS, AR, AL, and SC. (UPDATE: Victoria DeLano says there are multiple reports in SC. I may have misunderstood, and that these states don’t have any information… unsure…) There are about 15 states where they don’t have any information. Every continent in the world has reports of EoE. (Kapel et al, Gastroenterology 2008).
• 

  EoE Presentation by Age

  What Does the Person with EoE Look Like? There are many variations with patterns. EoE Presentation by Age (2004): Ages 0-5 have feeding disorders, 5-10 the most common is vomiting, 10-14 abdominal pain, 11-15 dysphagia, 13-20 is food impaction. The most common ages in EoE patients are 5-14. More people are being diagnosed and having symptoms. However, the prevalence of those who have symptoms that AREN’T diagnosed is becoming less and less (so our technology and knowledge is improving). EoE is most common in Caucasian males. It is common to see people with asthma, allergic rhinitis, and atopic dermatitis in people who have EoE.

• What Other Cells are Involved? Mast cells are elevated (may help distinguish from GERD, which has much less), T cells are elevated (Have seen that EoE induction relies on these in animal studies; Increased CD3+ and CD8+), B Cells are increased (can be triggered to make antibody)
• Why Do These Cells Come Into the GI Tract? Aeroallergen triggers: it appears that eosinophils are increased with pollen. It is also studied in rat models as well. There was a chart given (Fogg et al, JACI 2003) that showed that the numbers of eosinophils were highest in seasons with high pollens, proving there is a causal link. There were some other great graphs (Moawad et al, Alim Pharm Ther 2009) that showed eosinophils were highest in Apr-June and would drop back down. Food Triggers: EoE patients have higher IL-5 and IL-13 (which activates the eosinophil attack).
• What Happens When There Is Inflammation? Strictures and dysmotility in the esophagus. The esophagus is thickened, which dis-coordinates smooth muscle contractions. Episodes of this correlate with dysphagia. EoE patients also have increased fibrosis (scar tissue). Tumor necrosis factor (TNF) Beta-1 stimulates the esophageal muscle cell contraction.
• Eosinophilic Gastroenteritis (EGE):  First reported in 1937 by Kajiser. Now there are 1 per 100,000 cases. It is classified as involving eosinophils within the GI muscle layers. In a study involving 43 adults, over 70% had more than one GI segment involved. Food triggers are even harder to find. The most common symptom is pain. It is harder to treat, involving systemic steroids, immunomodulators, and protocol like crushed Entocort.

Okay, the first lesson is done! Did you get through it with all the technical terms? Let me know if you need any clarification. I felt this was one of the most important sections so I didn’t want to leave anything out. Now onto the next one!

Under the Microscope: Eosinophilic Esophagitis (EoE), Gastritis (EG), Gastroenteritis (EGE), and Colitis (EC)
Rob Newbury, M.D.
Director of Pathology at Rady Children’s Hospital San Diego
Clinical Professor of Pathology at UCSD School of Medicine

• Specimen/Biopsy Processing: Biopsy is placed in cassette, tissue embedded in paraffin with proper orientation, tissue is cute with microtome at 4-5 microns, then it is placed on a glass side and stained.
• Normal Esophageal Histology: 4 levels of the esophagus starting with exterior to interior – mucosa (epithelium and lamina propria – biopsies are taken from the epithelium), submucosa, muscularis propria, and serosa. Normal mucosa has non-keratinized stratified squamous epithelium, may also see endocrine cells, melanocytes, and a small number of inflammatory cells like lymphocytes. The epithelium consists of a basal layer (lowest portion approximately 2-4 cells thicker), prickle layer, and functional layer. The lamina propria (nonepithelial part of the mucosa) contains connective tissue, blood vessels, and a small amount of inflammatory cells.
• Histologic Features of EoE: Eosinophils are present in the epithelium though they shouldn’t be (except in small amounts in GERD). Eosinophil microabscesses. Superficial layering of eosinophils. Extracellular free eosinophil granules. Basal zone hyperplasia. Elongation of vascular papillae. Intercellular edema (space between the cells). Rete peg elongation (extension of the lamina propria). Fibrosis and eosinophilic inflammation of lamina propria. In EoE, there are often panesophageal changes. As stated before there has to be >15 eos/hpf though there is frequently more >100 eos/hpf. There is also eosinophil clusters or microabscesses, degranulated eosinophils, and superficial desquamation of epithelial cells.
• Recommendations: Report all abnormalities associated with EoE, and get multiple biopsies from proximal and distal esophagus.Diagnostic sensitivity: 2 biopsies = 84%, 3 biopsies = 97%, 6 biopsies = 100%.
• Differential diagnosis with similar symptoms and histology: GERD/reflux – usually up to 10 eosinophils/hpf.
• What needs to be considered in histologic analysis when looking at biopsies: number of biopsies, location of biopsies and eosinophils (proximal vs. distal), number of hpf that need to be examined, mean vs. peak eosinophils, size of hpf used to count the amount of eos, completely filled vs. partially filled hpf, eosinophil density, other associated features (such as degranulation)
• Currently the only reliable diagnostic test for EoE is biopsy (though Dr. Furuta is working on an alternative – I’ll touch on this next).

Diagnosis of EGIDs: Endoscopy, Biopsy, and Other Methods
Glenn T. Furuta, MD
Director of Gastrointestinal Eosinophil Diseases Program
Department of Pediatrics at National Jewish Health
Professor of Pediatrics Section of Gastroenterology, Hepatology and Nutrition at Children’s Hospital Colorado

• Diagnosis: Symptoms, increased eosinophils, exclude other causes and diseases. The underlying goal is to determine what is causing the symptoms.
• Clinical – Symptoms: younger children usually have abdominal pain, vomiting and eating problems. Older children and adults usually have food sticking, problems swallowing, and chest pain. Many people often have gastroesophageal reflux symptoms that don’t get better with reflux treatments and PPIs. Coping behaviors  are also seen (eating slowly, taking small bites, not eating often, etc.). Other symptoms may be present such as possible leg pains, malnutrition, abdominal pain, decreased quality of life, etc.
• Histopathology: increased numbers of eosinophils, other features of inflammation that is out of control.
• New diagnosis tool – Endoflip (captures esophageal function): A slender balloon is placed in the esophagus, balloon expands with a fluid, and balloon senses esophageal movements and shows motility..
• New diagnosis tool – Spectroscopy (detects eosinophils in esophagus): endo/microscopic technique to detect eosinophils in the tissue in 3D plane
• New diagnosis tool – Eosinophil Peroxidase Staining (quantifies eosinophil inflammation): Specialized staining/scoring system that will test for eosinophil number, distribution and degranulation. The stain shows up the protein.
• New diagnosis tool – Biomarker/Gene: molecule is measure in a body sample whose concentration reflects the severity or presence of some psychological/disease state. Biomarkers can assist in diagnosis, treatment, and likelihood of having complications.
• New diagnosis tool – Esophageal String Test (detects eosinophils in esophagus): device to capture esophageal secretions to determine if any eosinophils are present in the tissue. A capsule with string attach is swallowed. The string is retrieved; they are trying to determine how accurately the string captures eosinophils. This treatment is not available yet but many studies are being performed.

Allergy Testing: Who Needs It and Why?
Jonathan Spergel MD, PhD
Associate Professor of Pediatrics at the University of Pennsylvania School of Medicine
Chief of Allergy Section at Children’s Hospital of Philadelphia
Co-Director for the Center for Pediatric Eosinophilic Disorders

• The Role of Atopy in EoE: Many people with atopic dermatitis (AD – skin rashes) have a food allergy. Pollen can also induce AD. In the general population: about 1-6% have food allergies, 5-20% have atopic dermatitis, 20-40% have allergic rhinitis (AR), and 10% have asthma. According to a study done by Spergel, out of 620 patients (Ages 8 months to 20 yrs), 16% had food allergies, 21% had AD, 61% had AR, and 50% has asthma.
• Seasonal Variation in EoE: Symptoms of allergy and EoE peaked during pollen season. Eosinophils remain the same in GERD during different seasons, but change in EoE.
• Dietary Management Amino Acid-Based Formula: Patients were started on a formula diet and were evaluated 4-6 weeks later. The majority of them improved, including those with GERD symptoms. Dysphagia and eosinophils/HPF were decreased.
• Oral Immunotherapy: Induces EoE. Most didn’t improve with EoE. This indicates that food causes EoE and it is not TH2 mechanism. In milk OIT (oral immunotherapy), the biopsies were positive and then resolved after the removal of the milk. Symptoms occurred after maintenance doses.
• How to select the foods? Selective Diet – Guess: 35 children on top 6 elimination diet and 25 on elemental. The endoscopy was repeated 6 weeks later. 74% of those on top 6 elimination diet had less than 10 eosinophils/hpf. 88% of those on elemental diet had < 10 eosinophils/hpf. This shows that elimination diet can be successful, but elemental is more successful. They also tried single food reintroduction in 36 kids. 74% reacted to milk, 26% to wheat, 17% to egg, 10% to soy, 6% to peanut. There were 72% with only one allergy, 2 foods in 8%, and 3 foods in 8%. In 50 adults, after 6 weeks, 64% had less than 5 eos/hpf and 70% had less than 10 eos/hpf. In reintroduction, 60% reacted to wheat, 50% milk, Soy 10%, nuts 10%, and eggs 5%. SCRATCH TESTING ONLY IDENTIFIED 13% OF THE FOODS. Therefore, allergy testing rarely identifies foods.
• Top 10 Foods in EoE: Milk, wheat, egg, soy, corn, beef, chicken, potato, peanut, and pork.
• Skin testing: Scratch test – only for IgE reactions and works best with anaphylaxis. Not as accurate with EoE. Patch testing – best with contact dermatitis, AD, and foods. In patch tests, most doctors don’t do it accurately. In EoE, 1/3 HAVE NEGATIVE SKIN TESTS. Milk is the most inaccurate.
• What method is best? Allergy testing 55% + elimination ~55%. Allergy testing might guide food removal. But testing is far from ideal with many false positives and false negatives for major allergens. Allergy testing tells us more of what to add BACK into our diet. because there are more false positives than false negatives.
• Q&A: How often should allergy tests be performed? Rarely repeat. 6-12 months with anaphylaxis. How often should there be biopsies? After a diet or medication change. If you’re stable, then every year. How often should foods be reintroduced? Every few years. Unusual to outgrow.

Treatment of EGIDs
Seema Aceves, M.D., Ph.D. Associate Professor in the Division of Allergy, Immunology, Departments of Pediatrics and Medicine at the University of California San Diego
Director of Eosinophilic Gastrointestinal Disorders Clinic at Rady Children’s Hospital

• What Constitutes Successful Treatment? Histology, endoscopy, symptoms
• Treatment Options? Dietary elimination, topical corticosteroids, biologics, combos
• The Use of PPIs (Proton Pump Inhibitors): 50% of adult patients who responded to PPIs still had symptoms of EoE and eosinophils were >15 eos/hpf. 40% of pediatric patients who reponded to PPI still showed endoscopic features of EoE and had eosinophils >15 eos/hpf. Even patients with PPI responsive esophageal eosinophilia need to follow up to ensure correct diagnosis.
• Corticosteroids: Fluticasone vs. prednisone – both had similar symptom resolution, histology score, and symptom recurrence. Prednisode had more side effects, but also had a greater percent of people with less than 5 eos/hpf. Many improve with topical fluticasone.
• Metered Dose Inhalers:  There is also successful treatment with ciclesonide and eosinophils are decreased afterwords. In a budesonide (large particle nebulizer) treatment, eosinophils decreased dramatically than with the placebo. Overall response rate to viscous budesonide is 87%, with 0% response rate to placebo and PPI.
• Biologics: Anti IL-5 (necessary for growing eosinophils) Therapy – IV infusion in adults – eosinophils decreased.
• How long should treatments last? Topical budesonide 15 days. Prednisone, High Dose FB, and Elemental 4 weeks. Dietary Elimination 6-8 weeks. Topical fluticasone, topical budesonide, and Anti-IL-5 12 weeks. Then maintenance.
• Does Treatment Decrease Disease Complications? Topical fluticasone reverses transcriptome profile. Fibrosis is reversible in some – known in children but unsure in adults.

Adults with EGID: Just Big Kids?
Ikuo Hirano, M.D. 
Professor of Medicine and Director of the Gastroenterology and Hepatology Fellowship Program at Northwestern University Feinberg School of Medicine.

• Presentation of EoE in Children is Distinct from Adults: Adults are more likely to have dysphagia, food impaction, and heartburn, while kids have nausea/vomiting, abdominal pain, and growth failure.
• Symptoms in Children by Median Age:   Feeding disorder age 2. Vomiting age 8. Abdominal pain age 12. Dysphagia age 13. Food impaction age 17.
• Classification and grading of esophageal features in EoE: EREFS – EoE Endoscopic Reference Score – Exudates/plaques (white spots), Ringg/trachealization (horizontal lines), Edema (pallor), Furrows (vertical lines), Strictures (tapering or narrowing of esophagus). In adult EoE, most patients present with rings and furrows, while children it’s furrows and plaques.

• Complications of EoE in Adults: impaired quality of life, food impaction, esophageal stricture, esophageal perforation, and malnutrition. No reports of progression to cancer or eosinophilic gastroenteritis. Narrow caliber esophagus can occur. In EoE, there may be loss of elasticity and an increased risk for tearing.
• Quality of Life  in EoE – Common Concerns: changes in eating habits, embarrassment or social distress, fear or panic during dysphagia, concern of disease progression, and concern of medications for life.

• Esophageal Dilation: after dilation, 93% of patients reported slight or no dysphagia. Usually improved for 15 months. Increased from 11 mm to 16 mm. However, dilation does not affect the underlying eosphageal inflammatory process. To do or not to do? To do: provides long lasting relief of dysphagia, pain is transient, dilation has high patient acceptance, risk is low, all perforations reported have been partial ruptures. Not to Do: no influence on underlying inflammation, significant risk of mucosal laceration with chest pain, risk of esophageal perforation.
• Treatment options: topical steroids, systemic steroids, leukotriene antagonists, mast cell stabilizers, immunomodulators, biologics, elimination diet, allergy testing directed elimination diet, elemental diet, and endoscopic therapy.
• 

  Management of EoE in Adults:

  Suspected Algorithm for Management of EoE in Adults: Suspected EoE PPI for 8 weeks -> EGID with biopsy greater than 15 eos/hpf -> Topical steroid and/or dietary therapy -> EGID with biopsy -> persistent symptoms and pathology -> elimination diet, increase dose of topical steroid, systemic steroid, biologic therapy -> at any time if there is symptom relief and normal histology consider maintenance therapy.

How are you guys doing? Making sense at all? As said before, let me know if you have questions!

After the main session, we split up into different sessions. I went to the teen session, so I missed all of the ones I’m going to be writing about. I’m going solely off the slides so forgive me if I don’t talk about something that was mentioned. However, I feel these are important enough to write about!

BREAKOUT SESSIONS

Tube Feeding Basics
Victoria DeLano, parent of child fed via GJ tube
Ryan Piansky, child living with G-tube

DISCLAIMER: These materials are copyrighted by APFED – American Partnership for Eosinophilic Disorders. They own the rights to this information.

• Types of Tubes
  • NG (Nasogastric) Tube – tube going in the nose into the stomach. Used if feeds are expected to be short term.
  • G (Gastrostomy) Tube – surgically placed tube going into the stomach. Examples include: PEG – percutaneous endoscopic gastrostomy, sometimes placed preliminarily and then later changed to a button when the tract/stoma has healed. Mic-key and AMT balloon buttons – low profile G tube placed when the PEG is removed several weeks after surgery. Some surgeons prefer to skip the PEG and start with the button. AMT non-balloon and BARD – typically used when the patient has problems with the balloon bursting on the balloon buttons.
  • GJ (Gastro-Jejunostomy) Tube – a tube is placed surgically into the stomach, with a tube fed into the jejunum (part of the small intestine). This is placed when the stomach needs to be bypassed for dietary reasons or dysmotility. Continuous feeds are required. Bolus feeds aren’t an option.
  • J (Jejunostomy) Tube – tube placed directly into the small intestine. It is placed when the stomach must be bypassed entirely.
  • TPN (Total Parenteral Nutrition) – Feeding through the bloodstream by way of a central line.
• Types of Feeding
  • Bolus or gravity feeds – delivered several times a day over a short period of time. Done through a large syringe or by a feeding pump at a higher rate.
  • Continuous feeds – involve use of the feeding pump at a slower rate over the course of the day.
• Challenges of Tube Feeding
  • Granulation tissue – scar tissue that can build up around the stoma. It’s common especially within first 6 months. To minimize this problem keep the site clean and dry. Many doctors use silver nitrate to cauterize the tissue. Steroid creams, would care creams, alum, or carafate powder can also be used.
  • Buttons falling out and button changes –  G tubes can be changed at home after you’ve been trained.  GJ and J tubes have to be changed by a radiologist. Have an emergency plan in case it falls out, to ensure the stoma doesn’t close.
  • Always carry an emergency bag of supplies with you everywhere.
  • Work with the school and have procedures in place to ensure feedings are managed. Discuss 504s, IEPs, and health plans.
  • If going food free, discuss options with doctors such as: chewy P’s, sugar, salt, artificial ingredients, processed oils, ice, water and homemade ice popsicles, safe candies, and cotton candy.

Advocating for Your Child’s Education
Jennifer Cardenas
The Right to Learn
Trained advocated from the Parent Leadership Support Project

•  Top 3 Tips for Dealing With Schools: Get everything in writing. Focus on the gifts and talents of your child. Use the Least Dangerous Assumption whenever possible.
• Steps to Implement Support: Request a meeting in writing to discuss concerns. Provide medical documentation. Request full psychoeducational evaluation and behavior data collection. Allow time for evaluation and data collections. Review data to determine eligibility and appropriate academic goals and supports.
• What is a disability? ED Section 504 definition: any person who 1. has a physical or mental impairment which substantially limits one or more major life activities 2. has a record of such an impairment (or) 3. is regarded as having such an impairment.
• What is FAPE? All qualified persons with disabilities as defined under ED Section 504 within the jurisdiction of a school district are entitled to a Free and Appropriate Public Education.
• Individual Health Plan: Local jurisdiction, accommodations only related to medical needs, difficult to implement and track success, typically maintained by school nurse, little recourse for failure to follow.
• 504 Plan: includes individual health plan with district/state/federal oversight, includes educational accommodations, involves classroom/academic/nonacademic supports, provides OCR support for recourse, academic deficit not required for eligibility
• IEP – Individual Education Plan – student experiences an adverse affect on educational performance because of disability. Must meet criteria under one of the 13 eligibility categories. Educational Performance includes academics, social/emotional, behavioral. Need for specialized instruction/specially designed instruction. Goals and objectives set to mitigate deficit areas should include frequent progress monitoring and annual revision.
• 504 Plan or IEP? If your child’s EGID does not affect a child’s educational performance but meets all other eligibility criteria, then it falls under 504. If your child’s EGID does impact a child’s educational performance resulting in deficits (including social, emotional, and behavioral) and meets all eligibility criteria, then it falls under IDEA.
• Developing the plan: 504 – develop and agree on accommodations, identify stakeholders, determine method of implementation. IEP – develop attainable and high expectation goals and objectives based on present performance levels, develop accommodations and services, agree on placement.
• How to Handle Attendance: always get doctor’s excuses if available. Confirm that absences are accurately documented with the school. Stay in constant communication with your child’s teacher/administration. Excessive absences and tardies can be an exclusionary factor from receiving support if not proactively addressed. If excessive absences are expected, set up H/H as part of your 504 or IEP.

So that was most of the sessions from Saturday! Once again, I do not own any of this information, nor did I write it. If you need info on copyright or the original source, contact me.

After the sessions, I went swimming with some of the teens! Also got to see fireworks from Sea World.

Then Sunday came! I didn’t make it to the next few sessions because they didn’t really pertain to me because I’m not on formula. I took a walk around San Diego instead.

Many of the teens, including some siblings

Insurance Coverage for Elemental Formula
Victoria DeLano and Kendra Tiedemann

DISCLAIMER: These materials are copyrighted by APFED – American Partnership for Eosinophilic Disorders. They own the rights to this information.

•  After elemental formula is prescribed, you would assume you get it filled at the pharmacy. Most insurance consider it as durable medical equipment and filed under than, not the prescription plan. When filling it at the pharmacy, the claim is denied and the patient assumes it’s not covered under their private insurance. Some suggestions are as follows.
• Durable Medical Equipment (DME) – most companies classify elemental formula as DME. In this case, claims submitted under pharmacy coverage will be denied. Contact a DME supplier recommended by your GI or allergy specialist. Ask them to run the prescription through your insurance company using the ICD-9 code specific to your eosinophilic disorder.  These are as follows: EoE is 530.13, Eosinophilic Gastritis 535.7, Eosinophilic Gastroenteritis 558.41, and Eosinophilic Colitis 558.42.
• The following steps may help your insurance customer service rep determine whether or not your plan includes DME coverage for elemental formula. 1. Call the 800 number on the back of your insurance card. 2. Follow the voice prompts for questions about medical claims. 3. Advise the customer service rep that you have questions about coverage of Durable Medical Equipment. 4. Once the rep has accessed DME coverages, they will typically find the appropriate info with a search for elemental formula or amino acid based formula. If neither of these searches works, then you can ask the to look for DME coverage of enteral services. 5. If coverage is available, then there are additional questions to ask. These may be: Is coverage dependent upon the use of a feeding tube? Or does the plan also provide coverage when patients drink the formula? Does the insurance company require that you use a specific vendor? If so, they will be able to provide you with the provider’s contact information. Will you need to meet your deductible before coverage begins? What dollar co-pay or percentage co-insurance are you required to pay for formula? Will these payments be applied toward your out-of-pocket maximum for the plan year? 6. Ask your insurance company to assign a Nurse Case Manager to help you identify and access covered services more easily. While Nurse Case Managers cannot access coverage for claims that would otherwise be denied, it may be possible for them to expedite claims and appeals based on previously documented medical necessity. This is not the case with all insurance companies. However, it is an option worth asking about.
• Determine whether formula coverage is mandated by state law. The patient’s state of residence does not determine whether an insurance company is legally bound to pay for elemental formula. It depends where the plan was initiated. The Plan documents, available from your insurance company upon request, will indicate which state’s laws bind your policy. State mandates may not apply to self-funded benefits.
• If you have a self-insured employer plan, then you may have an additional option to request coverage for elemental formula. Large corporations and government entities often have self-insured plans where they contract an insurance company to do the administrativework of processing claims. It is the employer that pays the claims. The employer also has sole discretion as to which services will be covered. To determine whether your plan is self-insured, contact the customer service number on the back of your insurance card. Contact HR – advise that you have a concern with the self-insured plan which has not been adequately resolved by the insurance company. Ask to speak with the HR employee who handles the medical insurance plan. This is the person that has the ability to make an exception for your specific situation. Self-insured plans may be exempt from state laws which mandate coverage for elemental formula. However, many employers choose to voluntarily comply. If there is a mandate in place, share this info so that it can be considered alongside the specifics of your personal situation.
• File a Medical Appeal with your insurance company. Ask your physicians and dietary specialists to document medical necessity for this purpose. Be sure to contact your insurance company for instructions to ensure that this appeal is reviewed by one of their Medical Advisors for individual consideration rather than having it reviewed as a standard appeal by an administrative employee.
• Get involved to enact formula legislation in your state. If you are without formula coverage and would like to help make a change, send an email to pac@apfed.org so our Coordinator of Legislative Education can put you in contact with other volunteers and help guide you through the process.
• A list of states with formula mandates, links to the laws in each state, and current efforts to generate formula mandates can be viewed at http://www.childrensmagic.org

Adjustment in children and families coping with chronic illness
Nicole Zahka, Ph.D
Staff Psychologist
Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center

•  Demands on child with a chronic illness and their family: onset of symptoms, timing of diagnosis, requirements for medical appointments/diagnostic procedures, acceptance of diagnosis, collaborative decision making for treatment, and integrating treatment into family structure.
• Developmental Considerations – Young Children under 3: how does disease relate to family, emotional responses expressed through behavior (food refusal, irritability), child’s behavior shaped by parent’s behavior and interactions, changes in disease status/treatment reflect impact of illness on child and parent.
• Developmental Considerations – Preschoolers (3-5): ability to verbally communicate symptoms/feelings, able to report independently from parent, emotional response related to physical discomfort and observations for their experience related to others, and parental influence still important.
• Developmental Considerations – School Age (6-10): reliable reports of own physical/emotional state by age 8, increasingly peer oriented, medical treatments can lead to increasing awareness of being different, shift from special to seeing differences in a negative light
• Developmental Considerations – Pre-Adolescence/Adolescence (>10yrs): less parental supervision, more peer involvement, independent decisions about handling social situations, reports on quality of life my be individually associated with overall psychological adjustment.
• Family & Sibling Impact: daily tasks, financial burdens, effects on relationships within and outside the family. Impacts social activities, daily activities, vitality and sleep. Report of fewer positive emotions and more depressive feelings in parents.
• Types of social support: esteem/emotional, informational, instrumental, and companionship support.
• Seek help if needed!

After those sessions, there were 4 teen on the teen panel that answered questions that the parents had. It was really beneficial. Let me know if you have any questions about that.

The Teen Panel

Ryan, Hayden, and Haley

Overall Q&A with the doctors:

• Is difficulty swallowing caused by a muscle spasm? Not usually a spasm but due to strictures.
• Long Term PPIs: used more to make the diagnosis to see if it’s related to GERD. Side effects/issues can be infections, bone demineralizations, B-12 deficiency (1/1000 patients have side effects). PPIs can be helpful for accommodating symptoms.
• Allergy testing: IgG tests are done rarely and aren’t too accurate because they just tell you what you have eaten. Patch testing is testing for IgE reactions with delayed response.
• You don’t usually outgrow allergies.
• Eosinophils are greater during pollen seasons, which varies per season per state.
• Immunotherapy: shots will help air allergens. Sublingual immunotherapy actually INDUCES EoE. Overally, immunotherapy doesn’t really work in EoE patients.
• What disease are related? No answers but there may be a link to autism (study grants are being submitted)

After the sessions, it was time to head home. I had an amazing time, learned a lot of info, and met lifelong friends. I am so happy I went and hope to go to future conferences.

So did you guys learn anything!? It’s a lot of jampacked info with a lot of complicated terms so let me know if you have any questions.

To my regular readers, new recipes will be posted soon!

Thanks for reading!

-Michelle

Introduction

Hello!

My name is Michelle and I have eosinophilic esophagitis. You’re probably wondering who I am and what the heck that is.

I’ll give some background first.

Who I am: I’m a 22 year old who just graduated from Colorado State University with a Bachelor’s of Science Degree in Food Science and Human Nutrition with a concentration in Dietetics. As of right now, I have no idea what I’m doing with my life. In the future I want to become a Registered Dietitian and help people with food allergies (or prenatal counseling)! I don’t know how I’m going to get there. All I know is I like food and helping people. That’s a big reason I started this blog. I previously had a blog (you can find it here – http://eat-freely.blogspot.com/). I wasn’t keeping up with it during school. I decided to start over because it was filled with spam and I wanted to do healthier recipes. So that is what I plan on doing with this blog – taking recipes and making them allergy friendly and healthier!

What the heck is eosinophilic esophagitis (EoE)? Starting in the fall of 2009, I was having a “heartburn-like” feeling in upper abdomen. It would be so bad that I would often roll around in bed and miss classes and social events. Then in January of 2010, I woke up in the middle of the night with severe “heartburn,” which seemed to get worse by the minute. It was the worst pain I had ever experienced. I panicked, and couldn’t breathe. My back and abdomen muscles were tensed. I thought I was dying. Obviously, that didn’t happen. I decided enough was enough and went to a doctor. She thought I had acid reflux disease. After 6 months of not knowing what was wrong and all medications failing (along with multiple pain episodes and ER visits), I went to a gastroenterologist who performed an endoscopy and took biopsies of my esophagus. The next time I saw him, he told me I had eosinophilic esophagitis (EoE). He didn’t know much about it, saying it was a rare and fairly new disease, so he gave me a huge packet to read. Feeling frustrated and confused, I did what I do best: research. EoE is a disease in which eosinophils, a type of white blood cell, swarm the esophagus (though they aren’t even supposed to be there) in order to “attack” the food, what they think is an intruder. I also discovered that food allergies are often associated with EoE and immediately got tested. Turns out I was allergic to milk, eggs, soy, peanuts, peas, and oats. On top of that I have environmental allergies to trees, grasses, molds, weeds, and cat dander. So I rushed out and purchased all the food allergy cookbooks I could find. I spent my time making foods that I formerly enjoyed, most of them being sweets. After learning more about foods through this process, and switching my major to nutrition, my tastes have progressed to a more healthy lifestyle.

So what’s changed since my diagnosis? Not much, but I feel a heck of a lot better. For awhile, I was still having reactions, just not as constant. My doctor and everyone around me was confused. I attempted NAET, an allergy elimination technique, but it became too time consuming and expensive, though it did help. Then, one night in August, I had that awful pain in the middle of the night and had to go to the ER because it was so unbearable. Turns out I had gallstones and had to have my gallbladder removed. My doctor is still unsure if my gallbladder was causing the awful-pain-in-the-middle-of-the-night episodes or if it was related to my EoE because I had my pains in my esophagus area. This past December 2012, I was starting to have reactions again. I was retested for my allergies, and found out they had changed. I am now allergic to milk, eggs, peanuts, peas, almonds, and sunflower seeds. I was able to add back in soy (thanks to NAET). However, I still reacted to that so I have to be careful not too have too much or too often. Since then, I’ve been symptom free! They’re still researching EoE  and I’m always hoping for new treatments. As of now, I eliminate my trigger foods and I’m okay, though it’s nerve-wracking eating out at restaurants and planning trips.

So what’s the point of this blog? To help my fellow food allergy strugglers, of course! I’ll be posting allergy friendly recipes (some healthy and some not so much). I’ll also occasionally post common allergen replacements, restaurant reviews, and product reviews.

I’ve made this short (though maybe not for some of you) and left a lot out and it’s been a long struggle, so if any of you have ANY questions, feel free to contact me. I also made a manual on how to survive with food allergies if any of you would like a copy.

Thanks for reading!

-Michelle