Tuesday, October 2, 2012

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

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.

Monday, September 24, 2012

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.


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.)

Tuesday, August 21, 2012

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:

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: 

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):

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:

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:

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!

Sunday, May 6, 2012

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.

Friday, May 4, 2012

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.

Friday, April 20, 2012

CHOP Food Allergy Education Event May 5, 2012

Here is another CHOP event for people dealing with food allergies of any kind: 

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:
 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.

Upcoming Lecture at CHOP about Eosinophilic Esophagitis

On Monday, May 7th from 6:30-8:30 pm, Dr. Jonathan Spergel will present "Food Allergy In the Esophagus: When it hurts to Eat" at CHOP in the Leonard and Madlyn Abramson Pediatric Research Center, Osler Circle, Philadelphia.  

Dr. Spergel, co-director of the Center for Pediatric Eosinophilic Disorders, and his team will present the “state of the union” on eosinophilic diseases, as well as discuss research initiatives that are underway.

Did you know CHOP is collaborating with 11 other research institutions! And that Dr. Spergel wrote a piece of legislation requiring the NIH to fund eosinophilic research and it was passed? Invite your family, friends, teachers, coaches, local media and anyone in your support network to help not only spread awareness, but hope.

This is not a fundraising event.

Please R.S.V.P. by Wednesday, May 2 to busch@email.chop.edu.

Business Attire.

Please click here for more information and a flyer about the event.

Wednesday, February 22, 2012

NJ/PA Elemental Formula Legislation

There is a new Facebook community to support elemental formula legislation in NJ & PA.  There will be a new bill introduced to the NJ legislature in March, 2012.  Information will be posted at https://www.facebook.com/pages/NJPA-Support-for-Formula-Legislation/215841811847087

Assemblymen John Amodeo (R) and Chris Brown (R) will reintroduce A-3830, which, if passed, would mandate health insurance coverage for certain amino acid-based elemental formulas that are used to treat eosinophilic disorders.  Both welcome other assembly members to join them in sponsoring the bill.  Assemblyman Dan Benson (D) has already expressed a desire to do so.

If you reside in NJ, please meet with your local assembly representatives to educate them on this issue and request that they sign onto the bill. Assembly members' staff may contact Tom Suthard at Assemblymen Amodeo and Brown's office to indicate their interest in becoming a sponsor.  Their phone # is 609-677-8266.

Please share this information with others, especially those in the eosinophilic and food allergy communities, as well as those who are dealing with any other medical condition that necessitates treatment with elemental formula, whether delivered enterally or orally.

Monday, February 6, 2012

Feeding Tube Awareness Week

This is the 2nd annual Feeding Tube Awareness Week (February 5 - 11, 2012). There are NG (Naso Gastric) tubes, NJ (Naso Jejunal), ND (Naso Duodenal), G (Gastric), GJ (Gastric Jejunal), J (Jejunal) and TPN (Total Parenteral Nutrition). No one wants them and no one wants their children to have them, but when they are necessary, they can be a Godsend!

The feeding tubes, along with liquid medical "food", such as elemental formulas, can provide the proper nutrition when a child is allergic to many foods (typical allergy or eosinophilic disorder), can't swallow, has a gastrointestinal (GI) disorder, or isn't getting enough oral nutrition for various possible reasons. They can allow a person to receive the nutrition necessary for proper nourishment to gain weight, grow, and thrive, which they were otherwise unable to do on their own. There are many reasons why someone may need a feeding tube, but a person does not get one unless they REALLY need one. Please don't judge.

If you see someone with a feeding tube, please don't make a face, stare, or ask "What's WRONG with YOU?" They don't have "cooties".  It is an alternative, yet necessary way for them to "eat".  Please give that person (especially a child) a smile and know that whatever the reason, that feeding tube IS a medical necessity and it is providing medical benefit to them.  If your own child knows someone with a feeding tube, please reiterate your lessons of tolerance and understanding, just as you would with all other differences.  They likely feel left out enough as it is, and we can never have too many friends who care.

You can learn more about feeding tubes at the following organizations' websites:
APFED (Americal Partnership For Eosinophilic Disorders)
Feeding Tube Awareness
The Oley Foundation

To learn more about our personal journey and how the use of feeding tubes have affected our lives and improved the health of both of my children, please feel free to read my prior blog posts, especially the first one "First Post - Our Journey".

Sunday, February 5, 2012

Recipe for Gluten-Free Beef Stew with Red Wine

Since my son has been trialing beef, I have been trying to come up with a beef stew recipe that everyone in my family would enjoy.  After scouring through various recipes for stew in general, I experimented with the ingredients to suit our needs and came up with this recipe.  It has been a hit!  This one is free of wheat, gluten grains, dairy, soy, egg and any of the most common food allergens.

I previously only had stew with larger chunks of meat, but I noticed that cutting the stew meat into smaller pieces helped make it very tender and easier for the kids to eat.  While I used beef, I am assuming this would work with lamb as well, and I will likely try that in the future.

You can chop or dice the onions and other vegetables to the size of your choice.  I dice the onions (very small but not quite minced) because my son won't eat them if he can see them or recognizes them.

While I recognize that I'm not using chicken, I experimented with the Hol*Grain G/F Chicken Coating Mix and it worked well.  It contains rice flour, brown rice bread crumbs (medium grain brown rice), red pepper, black pepper, garlic powder, chili pepper, salt and xanthan gum.

If you can't have rice in your diet, you could omit the Hol*Grain G/F Chicken Coating Mix or rice flour mixture altogether.  You could also use another safe flour in lieu of rice.  The beef can just be browned with a little salt and pepper.  It will not be quite as tender, and the stew will be a bit more "soupy", but it will still be good.

Gluten-Free Beef Stew With Red Wine 


  • 1 1/2 - 2 lbs beef stew meat, cut into small (1-2") pieces.
  • 2-3 tablespoons Hol*Grain G/F Chicken Coating Mix ~ or ~ a mixture of rice flour and the following seasonings to taste:  garlic powder, paprika, salt and pepper (see preparation instructions below).
  • salt and pepper to taste
  • 2 tablespoons olive oil
  • 1 cup dry red wine
  • 1 box (32 oz) Pacific Brand Organic Beef Broth or other safe beef broth
  • 1/2 tsp dried thyme
  • 1 bay leaf
  • 1 onion, chopped or diced to the size of your choice
  • 1 medium to large parsnip, peeled and chopped into small pieces
  • 1 small turnip, peeled and chopped into 1" pieces (1/2 of a rutabaga can also be substituted)
  • 3-4 carrots, peeled and chopped into small pieces.


  1. Chop/dice the vegetables and set aside.
  2. Cut beef into 1-2" pieces; pat with paper towels to absorb excess moisture.  In a bowl, combine 2-3 Tbsp. Hol*Grain G/F Chicken Coating Mix or 2-3 Tbsp. rice flour, 1 tsp of salt (or less if preferred) and then add garlic powder, paprika and pepper to taste.  Add beef and toss to coat.  In a pinch, Lawry's Seasoned Salt can be substituted in the flour mixture.  
  3. Heat olive oil in a Dutch oven over medium-high heat.  Add beef to the hot oil and cook, stirring often for approximately 4-6 minutes, or until brown.  Add a little extra fresh-ground pepper while cooking if desired.  When browned, remove beef from the Dutch oven and set aside.  
  4. Leave the particles of beef and flour at the bottom of the Dutch oven.  Add a little bit of the red wine and stir to loosen the particles.  Add the onion, carrots, turnip and parsnip, and cook for 2-4 minutes, stirring often to keep them from burning on the bottom.  Return the beef to the pan and add the remaining red wine, beef broth, thyme, bay leaf and a little salt to taste (if still needed).  Bring to a boil.  You can also add a little extra thyme to taste if preferred.
  5. Cover, reduce heat to low, and cook, stirring occasionally, 1 to 1 1/2 hours, or until meat is fork-tender. 
  6. Serve and enjoy! 
Serves 4-6 people.

Saturday, February 4, 2012

Dairy-Free "Greek Yogurt"

If you are looking for a dairy-free "Greek Yogurt", So Delicious has come out with one!  I made a yummy shake for my "non-eos" daughter last night, using that yogurt, a banana, frozen blueberries, rice milk and MLO Brown Rice Protein Powder.  She only has to avoid dairy, but if I omit the bananas, it is safe for my son ("Eos Boy"), too!

On occasion, my daughter has a hard time eating solid foods, even soft foods.  That was the case yesterday, so I made the smoothie to give her something substantial and filling.  It was a hit!

The yogurt may contain only 2 grams of protein, but it DOES have 9 grams of dietary fiber (36% of the recommended daily intake) in each 6 oz container.  So, if you have So Delicious products in your local store, keep an eye out for this new yogurt.  I paid $1.99 for a small, 6 oz container, which is rather steep, but on the bright side, I was able to make something special, delicious, and nutritious for my daughter, which was also easy to ingest.

If you would like to check the ingredients in advance to see if it's safe for you to use, please click here for the product link.  

I'm looking forward to trying other combinations for both of my kids!

Friday, February 3, 2012

Back to Food Trials & Hoping To Blenderize Food

My son has stopped taking swallowed Flovent and is back to food trials.  He is currently trialing beef, which he has to have every day for 3 months before having another endoscopy with biopsies to determine if it is safe for him to eat, or if he has eosinophilic infiltration in his esophagus.  So far, he doesn't have any definitive symptoms that would indicate he is reacting, so I'm crossing my fingers.  He still has 2 more months to go before his scope.

The problem we've been experiencing is with his weight.  He lost a lot of weight when he stopped getting his enteral formula (an elemental liquid medical food that goes though his feeding tube) but his intake has improved and he is growing.  He looks VERY skinny now, and his pants will literally fall off without drawstrings or belts to hold them up, but his current growth spurt may be playing a part.  It's difficult not to be concerned when I see how skinny he has become, but I have to try not to overreact.  I'm trying to keep tabs on it to make sure he isn't dropping any more weight.

We would love to have him discontinue his enteral formula and get rid of his feeding tube, but thus far we haven't been able to get enough nutrients in him to do so.  He still supplements what he is eating with formula and if he isn't feeling well, that's all he will take.  So, I have been trying to figure out how to get enough nutrients and calories into him with the safe foods that he has.  His nutritionist recommended making shakes/smoothies with a safe protein powder (understanding that he can't have soy, dairy, wheat, etc.).  I have found a very good brown rice protein powder which can be used to make protein packed shakes.  He can have rice milk, coconut yogurt, berries, peaches, pineapple, pears, grapes, etc.  However, he can't have bananas.  He failed (reacted to) a combination of bananas and oats and will need to retrial bananas by themselves in the near future to determine if they are safe or not.  I suspect it was the oats, but there is no way to be sure without trialing them separately.  He also can't have melons or citrus fruits, which he definitely failed (they caused an eosinophilic reaction in his esophagus).

Since he does not like most vegetables, I would really like to put them into a smoothie.  However, my blender can't properly handle raw vegetables.  It doesn't make them smooth (it leaves chunks) so it isn't sufficient and you really can't make a good smoothie with cooked fruits and vegetables.  I'm trying to find a blender that CAN handle raw fruits and vegetables, so that I can make him smoothies that will provide him with the natural nutrients that he is otherwise lacking.

I am trying to find out if there are any potential medically-related tax deductions or if medical flex spending accounts can be used for the better blenders (with proper documentation and letters of medical need or Rxs from physicians).  There is one in particular, the Vitamix Blender, that I think would be perfect.  I have seen them demonstrated locally and I could make so many things that he could eat or drink, which would greatly benefit him.  If is not tax deductible or eligible for flex spending reimbursement, I won't be able to afford it.

If I do find that it's possible to purchase one, I will gladly post recipes (and videos if I can figure out how) that are free of the most common allergens, as well as others that are common triggers for Eosinophilic Esophagitis.  I truly feel that it would be beneficial to many parents of kids with Eosinophilic Gastrointestinal Disorders as well as adults with EoE / EGID.  It may greatly reduce the stress of trying to provide proper nutrition on a severely limited diet.

In the meantime, I will continue to struggle with getting enough nutrients and calories into my teenager who desperately needs them.