Why Meds?

It's funny when we tell friends or new acquaintance about Kaylin having EoE, the first response is usually, "Is there medication you can give her?"  But on the opposite side, when we explain she's on meds to friends in the EoE community, they ask "why?"  We also get a lot of questions from patients going down the road to using meds and ask if they really work and all the fun details.  Each kid is so different and at different states of this disease that it really varies whether it's a good option but for us, it was the only option.

Kaylin was always a fussy baby, fussy eater, fussy sleeper but she was healthy and happy for the most part.  Looking back, we now know how much the "fussy" part had to do with the EoE but at the time, so many of those things had just been explained away as "normal kid stuff."  When we got her diagnosis, we were given the 3 options of treatment.  First she was tested for allergies via skin prick testing and they asked us a million questions about foods and everything lead no absolutely no hint of having food triggers or food allergies.  The three treatment options were Medication, Top 8 Elimination and Formula.  Well immediately formula was off the table.  She had been on a full diet and growing and the symptoms we knew about would come and go and she'd seem fine for weeks.  Kaylin was starting preschool so the thought of having to completely change her diet and remove Wheat, Soy, Dairy, Egg, Fish, Shellfish, Peanuts and Treenuts seemed not only ridiculous but cruel.  She was already picky and never seemed to eat enough, we thought there would be NOTHING left for her to eat that she actually would eat.  When I've said it seemed cruel before, I get so many of the EoE parents in an uproar but for our daughter at age 4, it would have been.  As far as she was concerned, there was nothing wrong with her.  We also worried about her complying.  As we've since had to remove foods from her diet, we know now that we were right because even now that she correlates certain foods with pain, she still struggles with staying away from those foods.  Knowing absolutely nothing about food allergies or top 8 diets, they were basically telling us we could give her a medication that is working in most kids or turn our entire lives upside down with diet changes.  It was pretty simple.

The medication worked within weeks.  We noticed she stopped spitting up almost immediately, this was her major symptom we knew about at the time.  We didn't see any symptoms from the medication and the scopes proved it was working.

School's Here!!!

Well, almost.  Kaylin starts school next week and kinda last minute, we've decided to move her from our wonderful charter school to the regular elementary school.  There was a lot to that decision but school hasn't even started and we're realizing it's the right move.

On Monday, we registered Kaylin for school and I mentioned to the school receptionist that Kaylin has food allergies and I wanted to see when the nurse would be in.  She immediately got the health clerk who is at the school each day who I told about the EE and she took my information.  Well, by Wednesday I had an appointment scheduled to meet with the nurse that spreads her time between four schools.  Although we had a teacher last year that was amazing at dealing with food in the classroom, administration was less than helpful and I always worried about when she was in another classroom or what to do next year when her sister with peanut allergy starts Kindergarten.  A full time health clerk and nurse needed to be involved instead of a receptionist with a pair of crutches.

Our meeting with the nurse went amazing.  I had everything written up for her and she asked for permission to share it with Kaylin's teacher.  She went through our plan and understood the temptations because Kaylin is only 8.  But when Kaylin came in to introduce herself, the nurse asked Kaylin to help us keep her healthy.  She explained to Kaylin that we would have snacks for her in the classroom as well as the nurse's office but that Kaylin needed to be responsible and be part of the process.  She also reminded her that eating things her friends gave her without the teacher or parent was not allowed.  She told her that if she's experiencing pain, she lay down in the nurse's office and use the restroom but the goal is to get her back into class.  Hallelujah!!! I completely understand how difficult it is on Kaylin to be on a restricted diet at school but I also know she is the kid that will rise to meet expectations.  It's so nice to know that they are making her part of this process and holding her accountable as well as helping her.  Oh and the best part....she knew was Eosinophilic Esophagitis was!!!

And...living with this disease when you're five.

http://www.wvec.com/video/featured-videos/5-year-old-struggles-with-rare-allergy-condition-126541078.html

Living with Eos at 17

This is an awesome article about a teen living with eosinophilic esophagitis.

http://www.ect.coop/newsmakers/co-op-news-newsmakers/youth-tour-and-a-special-teen/32198

In & Out in 60 minutes!

Kaylin's followup appointment in the EE clinic was today and we were in and out in 60 minutes flat....that has to be a record!  It's been six months since her last appointment and she's doing great as long as she doesn't eat any of her "trigger" foods.  Her last scope was June 2010 and we will not be scoping until the end of the year!!!!  This will be about 18 months between scopes, the longest she's ever been and the longest the clinic will let her go.  She will continue on the current medications (Pumicort Slurry, Nexium & Zyrtec) and diet modifications with no changes since she's doing so well.

They will be scheduling a dexa scan to measure bone density since she has been on meds for almost four years now that can possibly have effects on the bones.  That will be done as soon as they can schedule it.

During her next scope they will also be doing additional bloodwork since it was noticed today that her tonsils and lymph nodes are extremely small.  They could not see her tonsils at all and thought they had been removed at first.  They are checking for an additional immune deficiency.  One more thing to worry about as they check "just in case."

"If I can't serve it to everyone, I won't serve it to anyone"

Stephanie Hapner will return to Tulsa to talk about allergy-free cooking.

Hapner, author of "Allergy-Free Cooking Everyone Loves" was in Tulsa in November after the release of her new cookbook. She'll be back on Saturday at Akin's to talk about the book and give a cooking demo.

She became immersed in the world of gluten-free, dairy-free and casein-free cooking when her son was diagnosed, at age 9, with a rare disorder called eosinophilic esophagitis requiring the removal of food allergens from his diet.

Hapner was determined to not give her son a diet that tasted like cardboard. She experimented with recipes and ingredients, creating foods good enough that anyone could eat them.

"If I can't serve it to everyone, I won't serve it to anyone" became her mantra.

"I've learned plenty of things the hard way," Hapner said. "But my goal is to help other allergy-sufferers benefit from my experience to eat better and live better."

Hapner's book includes 301 recipes free of corn, dairy, wheat, barley, rye, gluten, peanuts and casein. It offers a glossary of alternative ingredients, a crash course in label reading and a section on stocking the allergy-free pantry.


Stephanie Hapner will give samples of these cookies at her demo at Akin's Saturday.

QUINOA HONEY COOKIES

Makes 2 dozen cookies

1/2 cup honey
1/3 cup sucanat
1 teaspoon molasses
1/2 cup sunflower nut butter
1 teaspoon gluten-free vanilla
1 cup white rice flour
3/4 cup quinoa flakes
1 teaspoon baking soda
1/4 teaspoon sea salt

1. Preheat oven to 350 degrees. In a large mixing bowl beat honey, sucanat, molasses, sunflower nut butter and vanilla until smooth and creamy; set aside.

2. In a small bowl combine the white rice flour, quinoa flakes, baking soda and sea salt. Add the dry mixture to the creamed mixture 1 cup at a time, stirring well to combine ingredients.

3. Drop by teaspoonfuls on a baking sheet about 2 inches apart. Bake 12 to 13 minutes or until lightly browned.


Cooking Demo And book Signing

What: Stephanie Hapner will give a cooking demo and sign copies of her book.

When: Noon to 2 p.m. Saturday

Where: Akin's at 7807 E. 51st St.; 918-663-4137

You can also find Hapner on July 23 at the Akin's in Mayfair Place in Oklahoma City.


Original Print Headline: Allergy-free cooking guru comes to Tulsa

Read more from this Tulsa World article at http://www.tulsaworld.com/scene/article.aspx?subjectid=39&articleid=20110713_39_D3_CUTLIN576646

By NATALIE MIKLES World Scene Writer 

Published: 7/13/2011  2:23 AM 

Weston's scope is scheduled for August and it can't come soon enough.  He was up last night screaming for over an hour in pain.  It's freaky to watch him because it's like Kaylin being 2 all over again.  We haven't even introduced the soy or rice milk back in like we will before then.  Not looking forward to this at all.

WNYT.com - Coping with a child's rare disease

Help CURED Support Gastrointestinal Research at Feinberg

CURED (Campaign Urging Research for Eosinophilic Disease), an organization that supports the important eosiniophilic disease research of Drs. Nirmala Gonsalves and Ikuo Hirano at Feinberg, is one of 100 regional finalists in the 2011 Vivint Gives Back Project. This national online campaign will award $250,000 to the winning non-profit organization, and $100,000 to five regional charities throughout the United States and Canada.

You can cast your vote now for CURED. In addition to voting, supporters can also make online donations. On select days, Vivint will match these donations dollar-for-dollar—up to $50 per donor, and $2,500 per charity. Participants can vote for one finalist per day.

Vote now and continue to cast your vote each day through August 27, 2011.

Started by the mother of a patient, CURED raises money for research of eosinophilic gastrointestinal disorders (EGIDs). ALL proceeds raised from events go directly to research. EGIDs are a growing group of diseases where the eosinophils attack the gastrointestinal tract in response to foods eaten. Many children with EGIDs have extremely restricted diets and live on elemental formula. This organization is helping to find treatments and hopefully someday a cure.

Our latest Update

Well, we are coming up on another EE clinic appointment in just over a week and we're looking forward to one of the best ones ever. It has been six months since Kaylin has been seen in the clinic and she has been doing great.

Along with the Pulmicort slurry, we have managed to pinpoint the foods that she reacts to. As of right now she is off all dairy, pork, shellfish, rice, blueberries and we are careful to keep eggs and soy in small amounts - usually baked into other foods. We have thought for years about some kind of fruit bothering her but we were not able to put a finger on which one. A few months ago, she began throwing up blueberries and we knew we had found the culprit. I don't understand why she was able to tolerate them last year with small symptoms but this year led to throwing up and pain. This disease is so strange.

Article: New Eosinophilic Esophagitis Guidelines Update Diagnosis, Therapy

http://download.journals.elsevierhealth.com/pdfs/journals/0091-6749/PIIS0091674911003733.pdf

New Eosinophilic Esophagitis Guidelines Update Diagnosis, Therapy

New clinical guidelines for eosinophilic esophagitis characterize the disorder as a chronic, immune- and antigen-mediated disease.

The updated consensus recommendations, which constitute the first update since 2007, also suggest that eosinophilic esophagitis (EoE) is truly on the rise in both adults and children, although no one really knows why, according to Dr. Chris A. Liacouras, first author of the paper. The guidelines also suggest for the first time that the disease may have a genetic underpinning – an abnormality in chromosome 5.

In addition to a genetic predisposition, an increase in food allergies may be at the root of the growing incidence, Dr. Liacouras said in an interview.

"This disease is exploding, and many of us believe that foods are responsible. But we don’t know exactly how," said Dr. Liacouras, professor of pediatrics at the University of Pennsylvania, Philadelphia, and codirector of the Center for Pediatric Eosinophilic Disorders at the Children’s Hospital of Philadelphia. "In the 1950s and ’60s, we were pretty much eating the same kinds of the foods that we do today, and the genetics were there, although still unknown. There is something different going on now – maybe something in the way foods are processed," although there are no data yet to support that theory.

Of course, he added, physicians are also "getting better at looking for it and identifying it when we see it."

The paper, printed in the July issue of the Journal of Allergy and Clinical Immunology, combines the diagnostic, treatment, and research recommendations of 33 pediatric and adult gastroenterologists, immunologists, and allergists (J. Allergy Clin. Immunol. July 2011;128:3-20.e6). "The big thing that we are excited about is that this is one of the few times where the pediatric and adult specialists are working together as one group," Dr. Liacouras said.

In addition, pediatric patients seem to be presenting with more advanced disease since the 2007 report was released, he said. "Pediatric gastroenterologists have looked at this and biopsied it for years, but we have never seen this degree of rings and strictures [in children]."

Defining aspects of the new diagnostic criteria include histology results from multiple biopsies, as well as clinical findings. "The problem, especially for adults, has been that a lot of gastroenterologists have expected the pathologist to tell them what’s happening," Dr. Liacouras said. "[Pathologists] can only describe what they’re seeing, so the clinician has to see clinical findings as well as eosinophils to make treatment decisions."

According to the guidelines, "With few exceptions, 15 eosinophils per high-powered field is considered a minimum threshold for a diagnosis of EoE." Other histopathologic findings may include basal cell hyperplasia, dilated intracellular spaces, and lamina propria fibrosis isolated to the esophagus. Because of the disease’s exclusive location in the esophagus, proton pump inhibitors are most often used initially as a way to rule out EoE.

"You want to be sure that reflux acid is not causing this problem. If the patient responds to a proton pump inhibitor, they do not have this disease," said Dr. Liacouras.

Dysphagia, reflux, and heartburn can be early signs, and dysphagia is the most common presenting symptom in adolescents and adults. Infants typically experience feeding problems. "In children, [it] is more often present in association with other manifestations of atopic disorders – food allergy, asthma, eczema, chronic rhinitis, and environmental allergies," the paper notes.

Patch testing is an effective supplemental diagnostic tool, but is not perfect, Dr. Liacouras said. "This disease is not an anaphylactic event, a delayed event, or an immunoglobulin-mediated event, which is why it’s hard to use allergy testing as a diagnostic tool."

Treatment recommendations have evolved since 2007, although children often respond to elimination of typical allergy-inducing foods. Unlike adults, children may be able to reverse the damage when they avoid the problem food or foods. In contrast, adults generally experience a lifelong course of EoE that can only be symptomatically controlled, Dr. Liacouras said.

For both adults and children, topical steroids are usually indicated. These include steroids such as fluticasone, used with a spacer and swallowed instead of inhaled. "Since the 2007 guideline, there’s also an oral viscous suspension of budesonide in sucrose," Dr. Liacouras said. Biologics like infliximab will probably play no role in treating this disorder, he added.

Esophageal dilation can provide relief to some patients, but unless there are high-grade esophageal strictures, it’s reasonable to try medical or dietary therapy first, the authors wrote. Because of an increased risk of perforation, the guidelines advise physicians to use "a more conservative and careful approach" for EoE patients, compared with those who have other benign conditions.

The authors also call for future studies to identify EoE subgroups, further investigate the disease’s genetic underpinning, and study the role of allergy testing. Pediatric and adult specialists should continue their joint efforts to improve diagnostic criteria and determine the optimal therapy.

"The joint effort of pediatric and adult clinical and basic scientists in a variety of subspecialties has been paramount in the rapid understanding of this disease process," the paper said. "It is critical that leaders [in basic science, gastroenterology and allergy and immunology] continue to work together and undertake studies on the natural history, pathophysiology, biomarkers, diagnosis, and therapeutic approaches, not only to increase the scientific and clinical knowledge of EoE but also to improve the lives of children and adults affected by the disease."

The authors disclosed potential conflicts of interest including multiple financial relationships with pharmaceutical companies.