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.

Upcoming Lecture at CHOP about Eosinophilic Esophagitis

CHOP's Distinguished Speaker Series, 

"Food Allergy in the Esophagus: When it Hurts to Eat"

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.

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.

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".

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 


Ingredients:

• 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.

Preparation:

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.

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!