I have not written in a long time. My son's EoE is under control with medication and he is now an adult, so I doubt I will be posting too much more, if anything, regarding any new personal experiences. I may, from time-to-time, mention new information, but for the most part, I am no longer as involved in the eosinophilic community, so I may not be timely in those posts. I will, however, post other information that I find important, which may also apply to those in the eosinophilic community, as well as others.

Upcoming CURED / Cincinnati Children's Eosinophilic Patient Education and Research Conference

CURED (Campaign Urging Research for Eosinophilic Disorders) and Cincinnati Children's Hospital are co-hosting a patient education and research conference on November 2nd - 4th, 2012 for physicians, scientists, nurses, social workers, medical care team members, patients and families, regarding diagnosis, therapy, psycho/social aspects and the science of eosinophilic disorders.

The purpose of the conference is "to share and gain knowledge in the emerging field of Eosinophilic Gastrointestinal Disorders (EGID), including eosinophilic esophagitis".

The conference will take place at the Main Campus of Cincinnati Children's Hospital (Burnet Campus) at 3333 Burnet Ave, Cincinnati, OH.

According to the CURED website, the conference objectives are as follows:

1. Present updates on the diagnostic criteria for eosinophilic disorders
2. Discuss the latest research advances in eosinophilic disorders and their application to patient care
3. Discuss the psycho/social factors faced by families and patients and how to apply to better disease management
4. Enumerate Therapeutic options and resources for patients who have EGID

Please click here for a pdf document listing the speakers and their affiliations.

The registration form lists the conference agenda, which is as follows:  

Friday, November 2, 2012 

• 8 am - 5:30 pm - Research and continuing education seminar for (ages 13 and older only).  Childcare arrangements will be made for children 12 and under. CME credit is available for this seminar.

Saturday, November 3, 2012 

• 8 am - 5:15 pm - Patient education conference.  The conference will include lectures by those involved in GI, allergy, psychology, nutrition and more. 
• 7:30 - 9:30 - Meet and Greet at the Radisson Hotel Cincinnati Riverfront (different location than the conference).

Sunday, November 4, 2012 

• 9 am Continental Breakfast and Lecture by Dr Marc Rothenberg

If you would like to register for the conference, the registration form (which also lists the conference fees) and an option to pay the conference fees online are available via the CURED website.

Proposed Pennsylvania Infant and Children's Health Initiative Act

I am using today’s blog post to pass along an important plea for assistance from PA residents to help get important legislation passed.

URGENT REQUEST FOR PA FRIENDS & FAMILIES DEALING WITH EOSINOPHILIC ESOPHAGITIS:

PA State Representative Dan Truitt has introduced a bill, the “PA Infant and Children's Health Initiative Act”, within the PA state legislature.  This legislation would mandate that insurance companies cover the cost of elemental formula, an amino acid-based formula with no intact food proteins. Families dealing with Eosinophilic Esophagitis (EoE) and other Eosinophilic Gastrointestinal Disorders (EGID) will understand how HUGE this is.

Many people with this disease react to so many foods that they can eat little to nothing and rely on this formula to keep them healthy. Since there is nothing in it for those with EoE / EGID to react to, use of this formula allows the GI tract to heal while also providing the patients (primarily children) with the nutrition they need. Some patients are able to drink it, although the taste makes it very difficult to do so. Some patients need enteral feeding tubes for the same formula. Unfortunately, many insurance companies do not cover the cost of this formula. For many families, the monthly cost of elemental formula can be equivalent to a mortgage payment.

This bill will mandate insurance companies to cover this for PA residents. I urge you, whether you have a child with an Eosinophilic Gastrointestinal Disorder or not, PLEASE CONTACT your local representative and urge him or her to please co-sponsor this bill. You can find your representative's contact info here: www.legis.state.pa.us

Please, share this information and send this request to your family and friends. There is only a week to find 7 additional PA representatives to co-sponsor so this bill will move along to the state senate.  Below is a sample of a letter that you can use to write to your state representative.  If you do choose to get involved, those of us in the Eosinophilic Community (patients and their families) thank you very much.

Dear (insert the name of your representative):

I urge you to support the PA Infant and Children's Health Initiative Act, introduced by State Representative Dan Truitt, providing coverage and reimbursement for amino acid/elemental based formulas regardless of delivery method. Amino acid/Elemental formula is the most effective treatment as proven by medical research. Insurance coverage will have a direct and immediate impact on improving the quality of life of families living in the Commonwealth of Pennsylvania.

Thank you for supporting our family and helping all children living with these debilitating diseases.

(or Thank you for supporting families who suffer from these debilitating diseases.)

Important New Educational Advocacy Resources for the Eosinophilic Community

Many of us struggle as we advocate for our children in school, trying to make sure they have appropriate modifications and accommodations as needed for their Eosinophil-Associated Gastrointestinal Disorder (Eosinophilic Esophagitis and other EGIDs) and receive a Free Appropriate Public Education (FAPE) according to the law.  For many parents, it's overwhelming and we may not even know where to start.  We might say something like "I don't want to rock the boat at the school but I want to make sure my child is safe and isn't left out."  We also might ask:

• "What is a 504 Plan?
• "What is an IEP?"  
• "Which one do we need or do we need both?"  
• "What is an IHP?" and "Why do we need one?"  

Years ago, I was one such parent and it took far too long to figure it out on my own.  Thankfully, there are new resources available to assist parents with educational advocacy.

Just in time for the new 2012 school year, APFED has added very helpful videos/webinars to their website as well as their YouTube channel and will be adding more in the near future. Some of the available videos and webinars now include: 

• “All About EoE”
• “How Do I Inform My Child’s School and What Do They Need To Know?” 
• “What is Section 504 and How Does It Impact Sending a Child To School With an Eosinophilic Disorder?”
• "What are the Most Important Things To Know About Advocating for My Child?"

APFED now also has a specific section for School Advocacy, which includes resources prepared by an educational advocate in Georgia who has experience helping parents obtain necessary modifications and accommodations for their children with Eosinophil-Associated Disorders (EoE / EGID):

• Overview
• Getting Started
• Section 504 Eligibility
• IEP Eligibility
• Elementary School Accommodations
• Middle School and High School Accommodations
• Post-Secondary School Accommodations (College and Beyond)
• Frequently Asked Questions
• Info For School Staff
• Guidelines for Students With Chronic Illnesses (NIH resource)
• Templates and Forms (for 504 plans and IEPs)

Please take time to visit each of the above helpful advocacy links if you are potentially in need of a 504 plan or IEP for your child with EoE / EGID.

FAAN also has a new educational advocacy resource in the form of an Ask The Expert Q & A with Pete Wright of Wrightslaw. While the majority of the information on the FAAN website is available to everyone, this particular web feature is only available to registered FAAN members at:
http://www.foodallergy.org/page/july-august-2012---pete-wright-

The NJ/PA Eosinophilic Information site has recently been updated with additional links and resources, but more updates are coming soon.  Please remember to visit the Advocacy section for additional educational advocacy information and resources or you could just click on the Advocacy Info page of this blog.

Some of the resources that have just been added include:

Office of Civil Rights info about Section 504/ADA

Americans With Disabilities Act Amendments Act of 2008 (provides broader coverage)

Does a Child Need an IEP AND a 504 plan? The answer is “No”.

Migraines, Medication and Missed Instruction – Requesting Eligibility
This information can be applied to other medical issues, including Eosinophil-Associated Gastrointestinal Disorders.  There is also a template for a letter to the school, requesting an identification meeting.

SPAN (Statewide Parent Advocacy Network) of NJ:

Basic Rights

What is an IEP?

The Individual Health Plan (IHP)

Helping Families Navigate the Education System (pdf)

Please be sure to pass along any other new resources you might have that apply to those in the eosinophilic community!  Your comments are always welcome!

Interview about Eosinophilic Esophagitis on 93.3 WMMR in Philadelphia

Thank you, 93.3 WMMR in Philadelphia, for doing a wonderful, detailed interview with Dr. Jonathan Spergel of Children's Hospital of Philadelphia and the Harris Family about Eosinophilic Esophagitis (EoE) and their upcoming fundraiser for The Center for Pediatric Eosinophilic Disorders at CHOP.  The Harris Family is doing a wonderful job of educating the public and raising awareness about eosinophilic gastrointestinal disorders!

The interview can be heard at WMMR's website via the following link:

Public Affairs - Eosinophilic Esophagitis - Weekends Blog | 93.3 WMMR: Everything That Rocks

The fundraiser, "Food Phight 5K", will be held on Friday, May 18th, 2012 at 2 North High Street in West Chester, PA.  Registration begins at 6 pm.  More information about the fundraiser can be found at www.foodphight5k.com or http://giving.chop.edu/site/TR?fr_id=1380&pg=entry

From the fundraiser's page on CHOP's website:  "CHOP's Center for Pediatric Eosinophilic Disorders currently treats 1100 infants, children and teenagers with an eosinophilic disease - the largest clinical population in the world.  Patients come from all over the U.S.  This clinical population provides an extensive source of data for research.

Currently, CHOP is leading 11 different research studies related to eosinophilic diseases and they are collaborating with other world class institutions. These advances offer high hopes for children who are suffering.  However, ongoing research costs a lot of money.  That's why we need your help."

I am also the parent of a child who is treated by specialists at CHOP's Center for Pediatric Eosinophilic Disorders and I have been very involved in the eosinophilic community for 8 years.  I can personally attest to CHOP's devotion to their patients and to research.  Please consider donating.

The G-tube is out!

I wanted to write a quick update with some big news:  Tonight, after 7 years, my son's G-tube is finally out!

He has been back on Flovent for a month with an unlimited diet and is doing well.  He had lost too much weight when he was back on his safe diet at the beginning of the year, so I was not sure that it was a good idea to remove it yet.  However, with the Flovent (swallowed, not inhaled), he is eating well, gaining the weight back and is growing again.

At his last appt (2 days ago), he had gained 6 lbs and grew another inch, so I knew it was the right time.  I want him to heal before the summer, and it can take 3 weeks for the stoma to close, which will take us to the end of May.

I didn't give him any advance-notice because that would have made him too anxious.  He was anxious enough as it was.  I just told him it had to get done and I did it.  The stoma is clean and covered and hopefully it will close up quickly.

While I didn't make a big deal about it because he was so nervous, this is a very big deal!   I had envisioned a big celebration when it happened, so it is a bit anti-climactic, but that's ok.  That part of his life is now behind him and he has a new chapter waiting to be written.

He only has a few more foods to trial, so we're going to do one a year.  We'll start in January and scope in April, just before his birthday, as we did this year.  That will give him a break from his Flovent and allow him to finish the remainder of his food trials while minimizing his procedures.

For now, while he is on the swallowed Flovent and it is working, he can eat anything he wants, so I am focusing on increasing his intake as well as expanding his repertoire.  So far, I am very pleased with how well he is doing and I hope he continues to do well.  He has overcome great hurdles and is now thriving.  There is finally some semblance of normalcy.  I am a very happy mom.

CHOP Food Allergy Education Event May 5, 2012

Here is another CHOP event for people dealing with food allergies of any kind: 
http://www.njpaeos.org/index_files/Invitation_CHOP-May_5th_Food_Allergy_Education_Event.pdf

I just found the invitation in my inbox and am late in passing it along. This is in addition to the other May 7th event I previously mentioned (see the other post from today). Both will be equally educational. I have updated the njpaeos.org website accordingly, so you can find the info and flyer there if you are interested.

I have been advised that this event is intended more for adults and is for food allergies in general, not only EoE/EGID (although Eosinophilic Disorders and FPIES will also be discussed). Many of us and/or our family members also deal with "normal" food allergies. Please RSVP by April 28th. The information is on the website and the flyer is linked above. 

Here is the info: 

The Children’s Hospital of Philadelphia Food Allergy Center Family Committee and Physicians cordially invite you to attend:

An educational morning to highlight and celebrate the exciting developments and current advancements that CHOP Food Allergy is making for families living with food allergies.

During this event we look forward to:

• Sharing the newest developments and research for Immunoglobulin E (IgE)-mediated food allergy, Eosinophillic Disorders and Food Protein-Induced Enterocolitis (FPIES).
• Featuring key-note speakers: Rushani Saltzman, MD; Elia Tait-Wojno, Ph.D.; and Mei-Lun Wang, M.D. Dedicated CHOP researchers working together to eradicate food allergic conditions: Jonathan Spergel, MD Ph.D; Terri Brown-Whitehorn, MD; Antonella Cianferoni, M.D., Ph.D.; David Artis, Ph.D.; Paulette M Devine, RN, AE-C; Megan Ott, CPNP and Pamela Scott-Bey M.A. will also be in attendance.
• Learning inspiring personal accounts, compelling life management stories & firsthand experience after life changing clinical interventions - all from fellow CHOP families with children with food allergic conditions.

Event Details:
When: Saturday, May 5th from 10:00am-12:30pm
Where: Colket Translational Research Building - Room 1200 A & B
3501 Civic Center Boulevard, Philadelphia, PA 19104
Parking Located Under Wood Building. Courtesy Passes Provided

There is no cost to attend the event, but CHOP gratefully welcomes all donations at the door or at: www.giving.chop.edu (**Please be sure to specify FOOD ALLERGY)
Donations will be directed towards the CHOP Food Allergy Center’s initiatives. 

Bring your expired Epi-Pens! There will be a demonstration on proper use and disposal of Epi-Pens.

"The mission of the Food Allergy Center is to be the leader in recognizing, managing and treating the full spectrum of food allergies. We strive to achieve this through groundbreaking research, full use of CHOP’s operational expertise and resources, and our passion for improving children’s lives with optimal, personalized care. We are honored to offer this Food Allergy Education Day as the first of a series of events to follow."

To RSVP, please email: Familyday@email.chop.edu 
and please provide the following: Your name, your mailing and email address and number of attendees. Space is limited.

Please note: this event is not suitable for young children due to the format of the event.

If you have any questions, please call (215) 590-2549.
Please RSVP no later: April 28th.