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Poems and a Loss of Words

Published by Jeremiah Blue on Oct 29, 2019

“I made myself a snowball,” Sandra presents to her son Mason, rehearsing a Shel Silverstein poem he will recite for his third-grade class.

Standing as tall as he can at just under four feet, his fingers fidget through his short dark hair. Mason takes a moment to clear his mind before he repeats the line.

“Good. Now, As perfect as could be…” Sandra continues.

“As perfect as could be,” his tiny voice still a little unsure of itself.

“How about two lines this time?”

“Sure.”

Straightening his back and pushing out his chest, trying to make himself feel confident, Mason clears his throat. His hands are clasped behind his back, wiggling with nerves. He takes in a deep breath as he stares at the ceiling of their living room, trying to remember two whole lines in a row.

Slowly but carefully, he recites, “I thought I’d keep it as a pet…And let it sleep with me.”

Sandra contains her bubbling pride but lets out a burst of praise.

“Perfect. Nice job!”

With a quick smile, Mason’s face falls back to looking worried again, but not about remembering the lines of the poem this time. His question is much bigger than that now.

“But I don’t have to do it in front of the whole class, right, Mom?”

“Nope. Not at all. It will be just you and the teacher.”

***

The rest of the kids in Mason’s grade are required to recite their poems in front of their entire class, usually four to five times a year. Sandra understands her son all too well, and she knows that reading a poem in front of the other students will not be an option.

Four years earlier, Mason had completed an intensive feeding therapy program and been cleared to have a feeding tube removed from his belly. His parents began taking him to a counselor out of a concern for his mental and emotional health. Pursuing a diagnosis led Mason to be regularly seen by an array of doctors, undergoing constant testing and assessment. His parents correctly intuited that so much pain, discomfort, and continuous exposure to medical evaluation would take a toll on such a young child.

Once Mason began kindergarten—his first full-time school environment—it became clear that his health challenges were changing and evolving. He was free of the feeding tube and able to eat a limited amount of foods reliably without significant issues now. But his parents could not have anticipated the influence it would have on his socializing and functioning at school. It became clear very quickly that Mason was living with a constant sense of fear and physical pain. At first, his teachers and counselors assumed he might have autism, because he was too afraid to make eye contact or speak to anyone but his mom and his sister, Milana. Even talking with his dad, Mike, became difficult for Mason. He would often communicate through his mom. Eventually, a therapist diagnosed Mason with a disorder called selective mutism. The condition is a complex childhood anxiety disorder characterized by a child’s inability to speak and communicate effectively in select social settings. Mason found himself unable to communicate with teachers or other students at school, even when he was in pain. His co-existing diagnosis of cyclic vomiting syndrome, a part of the pediatric feeding disorder umbrella, often causes him to vomit for no reason or to vomit without being able to stop. It left him in chronic discomfort and anxiety. Still, he was too afraid to communicate with the teacher.

While in class one day, he knew that he was getting sick and needed to find a place to relieve himself. The medication he takes for the syndrome helps manage the symptoms and discomfort, but it doesn’t always work. A trash can sat not too far from his desk in the classroom, but fear was paralyzing Mason. He didn’t want anyone to know he was sick—a part of his desire to go unnoticed, to not draw attention to himself. Without being able to control the episode and unable to bring himself to tell the teacher, he instead threw up on his desk, in the middle of class time.

The paralyzing anxiety of selective mutism stops Mason from communicating about even his most urgent needs.

***

The day after practicing lines with his mom, Mason stands in front of the teacher to recite his poem. His arms are tightly strewn behind his back again, hands clasped together and turning over one another, legs visibly shifting from one to the other. The nerves from last night’s rehearsal are still real—even worse than before, now that Mom isn’t around. And he has to recall more than just the two lines. It’s the whole thing this time.

“Ok, Mason, whenever you’re ready,” the teacher says to him in a quiet room, empty but for the two of them.

Mason does not respond.

His eyes wander the floor. Anywhere but in the direction of the teacher. Avoiding any eye contact.

Finally interrupting the silence and Mason’s meandering gaze, she realizes her mistake. She and Sandra spoke about this dynamic and had agreed to what could work best for Mason.

“I’m sorry, Mason. I forgot to turn around.”

Pivoting to face the wall, away from Mason, she is no longer looking directly at him. With more confidence this time, he begins the first line, “I made myself a snowball…”

All the doctors and therapists and nurses, with their testing and poking and prodding, have left Mason uncomfortable with adults, mainly when they focus attention on him.

With the teacher’s back turned and her gaze diverted from him, Mason finishes the poem, reciting each of the lines, naturally and fluidly.

“Nice job, Mason,” the teacher affirms. “You know, you’re really good at this.”

The expression on Mason’s face is still tight with nerves, but a small smile forms and his eyebrows prick upwards with a hint of more confidence and relief.

“Thanks. Maybe someday I’ll do it in front of the other kids.”

***

The accommodation for the poems is only one part of the many arrangements that Sandra and Mike have to make for Mason so that he can attend school. A month before each school year begins, Sandra meets with counselors to talk about the unique facets of Mason’s personality, medical history and conditions. They also discuss what to expect of how this can influence his interactions with other teachers and students. Sandra will then meet individually with the teacher, explaining the details all over again.

One year, she chose not to reveal all of Mason’s medical history or symptoms with the teacher. She wanted to leave room for him and the teacher to develop their relationship and bond together. Never again. The teacher’s lack of understanding resulted in regular punishment for Mason. Punishment for when he wouldn’t speak or wouldn’t sit with the other students, or when he stayed in the back of the room because he was silently enduring sickness and pain again.

The ripples of Mason’s health extend beyond his experiences at school and with food, beyond his anxiety disorder and his syndrome. His big sister has also struggled. Milana, older by two years, didn’t understand why Mason gets so much attention and special treatment.

At a family dinner, Milana decided it was time to speak with her parents about it. She turned to her mom and pointed out that Mason was using the iPad at the table.

“That’s not allowed, Mom. I couldn’t do it,” she pointed out with diplomacy and wit. “Mason even gets to stay up late sometimes. It doesn’t seem fair.”

Sandra and Mike have been forced to improvise around Mason’s evolving health challenges and their management of it. They have mostly settled on no longer prioritizing a diagnosis over trying to be happy and thrive, in the absence of answers they have long and busily pursued. They had initially hoped a diagnosis would be the key to finding treatment and moving on. Instead, now, they focus on the day-to-day, the attempt to be as confident and comfortable with their understanding as parents. They are continually refining their ability to morph, learn, and adapt on their own to the new and compounding challenges that arise. Sometimes, that means their approach to parenting with Mason means different things than it means for the more independently functioning Milana. But Milana still feels it in her life—and feels it deeply.

At the dinner table that night, with conviction and clarity, in front of the whole family, she asked her parents a straightforward and emotional question.

“Why do you love Mason more than me?”

It’s a question that pierces deep into a parent or anyone who cares and loves for someone as profoundly as Sandra and Mike loves Milana and Mason, equally.

Mason faces the challenges of pediatric feeding disorders like cyclic vomiting syndrome and the anxiety disorder of selective mutism. But his entire family is intimately entwined with the ongoing and ever-changing circumstances they face.

***

By the end of the school year, Mason has had the chance to recite a few more poems. Just himself and the teacher, no classmates. The teacher’s back always turned so he can manage his fear and anxiety.

For his final recitation of the year, Mason and Sandra are practicing again in their living room. He chooses a little longer poem this time, something slightly more challenging than his first attempt. His confidence is growing. And the rehearsal with his mom goes as planned like it always does. Nothing has changed. They learn the lines, repeat them to one another, and Mason gears up to present with the teacher. Sandra has no reason to believe anything is different this time. Neither Mason nor the teacher mention any changes.

But that is not the case. Mason comes home with a report card from his teacher. Sandra opens it up and is happy to see that the grades are positive. She catches something in the remarks about his poem, though: Mason read the poem in front of the entire class.

Astonished and initially upset that the teacher would alter the agreement the two of them had decided on before the year started, Sandra asks Mason about it.

Her face shows a clear sense of confusion and concern.

“Mason, you read your poem in from of the entire class?”

Mason does not bat an eye. He looks at her, with all the innocence of a small child—Mason’s innocence even more pronounced by his quiet and passive demeanor. But his response is plain and clear.

“You thought I couldn’t do it, but I could do it. So, I did it.”

Sandra is shocked. And then, quickly, prouder than she could have imagined being at this moment.

She had been mowing the proverbial lawn for Mason for so long—preparing special meals different from the rest of the family, or meeting with countless teachers and counselors, or fillings out endless forms, or directing and monitoring Mason closely for his safety and comfort. And now he has joined her in pushing the mower across the lawn. He understands the need to challenge himself and try new things.

So, he did.

In the same way, years earlier, following a session in intensive feeding therapy, the family was encouraged to try new things slowly. They decided on going for pizza, a family favorite. Mason had a fear of foods he described as “wet.” To him, a saucy and cheesy pizza was certainly wet. But like the therapist and his parents encouraged him, Mason challenged himself and tried it. Then, promptly gobbled the entire piece down. No issues.

***

A village has been assembled, by Sandra and Mike, to participate in Mason’s life and health. And Mason certainly has a hand on the figurative lawn mower, helping forge his path through the dense and often murky landscape.

But there is no doubt that a great deal of mystery and angst accompanies Mason and his family. In the last three years, since he started school, a whole new world and set of challenges have evolved. A series of unexpected things. His parents learn each day, each month, and each year anew. Doctors still offer minimal clarity on the disorders or treatments related to pediatric feeding. Not to mention rarely providing perspective on the traumas that result in a child. Or their families and communities.

Sandra, Mike, and Milana were happy to hear those words, “I could do it. So, I did,” from Mason, and to see him gobble down one of their family’s most celebratory foods. And they perpetually wait to understand how their lives and health will change and evolve. They are poised and on alert for how to manage the continuous novelty of it all. Hope and anxiety, good days and bad days, victories and failures—these are the things that define their daily lives. They remind themselves to be patient and kind because everyone has a story.

But Mason and his family live a story with far more mystery and unanswered questions than the average family. Clarity on treatment and diagnosis for Mason is most often silent. An utter loss of words or the ability to communicate about pain and paralyzing anxiety.

Much like the absence of words Mason experiences in his young life.

Back to School Time!

Published by Alba Chester on Aug 20, 2019

Where did summer go? As store aisles go from patriotic flags to notebooks and pencils my stress level as a mother of three children with various Pediatric Feeding Disorders starts to rise. Getting kids off their electronics and ensuring summer reading is done and math skills warmed up, that’s the easy stuff. When you have a child with a Pediatric Feeding Disorder going back to school is nothing simple, but with time and good preparation it can be done and stress levels can return to “normal”.

Our family starts by scheduling medical visits during late summer. That way needed medical paperwork gets completed before school starts including Emergency Allergy Action plans, Asthma Plan, Self Carry authorizations and any other required forms needed for school. Scheduling doctor visits before school not only gets us ready early but also prevents missing classroom time.

One of the most important things for a successful school year is clear communication with your school. When starting a new school or preschool, I reached out to the school principal the spring before they started school. First was an email introducing our family and our PFDs and I include a request for a sit down meeting to develop a Section 504 plan. For us, the Section 504 plan has been key to achieving that clear communication. I go to the meeting prepared with handouts explaining our PFDs and a list of requested accommodations and why we need them. As kids grow those accommodations will change but the key is to have that conversation with school staff every year to determine what is best for the child. In my experience the way we approach this process can determine success. Go with a positive attitude and be willing to listen to school recommendations while knowing your ‘must haves.’ For us this includes:
  • Access to medicines and any PFD related needs
  • Proper training of teachers and staff
  • Emergency action plans
  • Safe classroom environment
  • Safe lunch game plan
  • The preparation and attitude for those discussions will determine the ultimate outcome. We have been blessed to have successful meetings and have established 504 plans from preschool to high school.

    Once the Section 504 plans are in place, back to school from one year to the next seems a bit less stressful. I always reach out to our nurse and 504 coordinator one to two weeks prior to ensure the 504 Plan will be shared with all teachers before school starts. I also request a meeting in person to ensure that all teachers and staff are up to date and to answer any questions or concerns they might have. This communication to teachers and staff needs to happen before school starts so the timing to reach out to the school is critical.

    With all the paperwork done and plans in place, it’s time to battle the crowds trying to find all the items in the school supply lists. But don’t sweat the little stuff. As my kids get the last few days of freedom and video games I try to enjoy a few more days of sleeping in, no carpool lanes and no battles with homework. Oh how I miss summer, but I look forward to the start of school. Good luck and have a great year!

    Some Resources I found helpful getting ready for school:
  • U.S. Department of Education’s Parent and Educator Resource Guide to Section 504 in Public Elementary and Secondary Schools
  • Feeding Matters Blog: School-Based Accommodations and Support
  • Cured Foundation
  • FARE’s Back To School Resources
  • Kids with Food Allergies School Resources
  • FAACT School Resources
  • Camp Responsibilities: Establishing Protocols to Prevent and Respond to Food-Allergic Reactions

    Published by Food Allergy Research & Education (FARE) on Jun 25, 2019

    It’s estimated that each year, more than 11 million children and adults attend a camp. Throughout the U.S., there are more than 12,000 day and summer camps, run by nonprofit organizations, religious organizations or private entities. Camps provide wonderful opportunities for enrichment and socialization.

    For the nearly six million children in the U.S. with food allergies, it’s important that camps have established food allergy policies. Food allergy reactions occur without warning and can even occur for the first time while a child, or even a staff member, is at camp.

    Having a written food allergy policy in place ensures that staff members are well-equipped to care for anyone who may experience a food allergy reaction while at camp.

    Camps should find out whether their state allows them to keep “stock” epinephrine on hand in case someone who has not been previously diagnosed with a food allergy has an allergic reaction. Camp staff should know where epinephrine is stored and be trained on how to administer it.

    Creating a Camp Food Allergy Policy
    Know about the availability of emergency care, including:
    • how to contact emergency medical personnel/ambulance;
    • how much time it will take for an emergency crew to arrive;
    • how far it is to the nearest hospital; and
    • if the hospital has a physician present at all times.

    Note that camps in rural settings must understand that ambulance and emergency crews may be volunteers. These emergency situations may require additional plans and medications.

    Review the health records submitted by parents and physicians.


    Establish prevention protocols for your camp.

    • Be certain that all food service or kitchen personnel are aware of, and can identify, campers with food allergies.
    • Discuss meal plans with parents and the camper. Make alternative plans if necessary.
    • Plan how a camper with food allergies will take part in meals. For example, he or she might need to go first in a buffet line and at other food-related events to avoid cross-contact. Or, the camper might need to sit apart from other campers, in a special allergen-free space. In the latter case, try to have someone sit with the camper so he or she doesn’t feel excluded.
    • Make sure that all staff can recognize the symptoms of an allergic reaction and know what to do if a reaction occurs.
    • Maintain an appropriate sense of confidentiality and respect for individual privacy.
    • Make sure the nurse has the required authorizations and appropriate medications to use in the event of accidental contact or ingestion.

    Ensure that appropriate personnel are familiar with how to use epinephrine, where the medication is located and the camp protocol.

    • Schedule a training session before the start of camp. Allow participants to become familiar with how to operate the different types of epinephrine auto-injectors.
    • Comply with local and state regulations about the administration of medication.

    Plan for field trips or offsite activities.

    • Be certain any emergency medications and authorizations go with the camper and staff.
    • On trips away from the camp, staff should always carry a communication device (e.g., cell phone, two-way radio).
    • Some medications, such as epinephrine, become ineffective if exposed to temperature extremes (heat or cold) or light. Be certain that all personnel understand the importance of keeping medication protected.

    For additional information and resources on creating a safe and positive experience for campers with food allergies, visit FARE’s camp web page.

    Summer Travel Tips for Children with Special Needs

    Published by Cathy Humphrey on Jun 05, 2019

    With Memorial Day behind us, many families are setting their sights on summer vacations. When you travel with children (or adults!) with special feeding or other healthcare needs, here are a few things to keep in mind:

    1. Planning
      Whether you’re going on a day trip or a multi-day vacation of your dreams —planning is key! Where are you going? What will you be doing and do you need to make special arrangements? How long will you stay? What resources will you need (Special foods? Medical equipment? Vehicle rental? Accessible transportation between the airport and hotel?). brettapproved is a useful source for accessible hotels, restaurants, and entertainment venues.

      American Airlines also has a program that was created for children with autism and other special needs. It’s Cool to Fly American is a mock travel experience where children and their families can experience the airport before traveling. The 3 ½ hour experience includes parking, check in, waiting at the gate, boarding a plane, taxing, returning to the gate, and retrieving their luggage.
    2. Preparation
      Making lists is necessary for a successful vacation, especially when traveling with people who have special feeding or other healthcare needs. Lists are part of planning and part of preparation. An itinerary that includes key contacts, phone numbers, and addresses is useful. A list of what to pack (you can make a list for each person traveling or just for the person with special healthcare needs) is very important—starting with items you can’t buy where you’re going, such as medicine and special foods. You can be as general or detailed as you need (toiletries and food OR 6 diapers and 4 pull ups per day x 8 days, 2 packets of x food, 3 packets of food, 2 spoons, 1 dish), but I find it helps the planning and preparation process to include every last item!

      Preparation also includes being ready for “What if” questions. What if her g-tube falls out? (Include “spare g-tube” on list.) What if we can’t find pureed foods where we’re going? (Decide how many packets of food to bring or find nearby grocery stores.) What if he has a medical emergency and we need his latest scans or medical records? (Bring CDs of critical scans and usernames/ passwords for electronic medical records or put copies of important records in Dropbox, Google Folder, or other cloud-based location.) What if she needs to go to the emergency room? (Include the address to the nearest children’s hospital to your destination on your list.) And so on.

      If you are going to Disney World, there is a discussion group on Facebook called Meals & Wheels in Disney World for people with questions about food allergies, wheelchairs, and pureed food. The creator of the group is a travel agent and has two kids with special healthcare needs. Preparation is a key component of a successful vacation.
    3. Flexibility
      Another key component is flexibility — especially when travelling with a person who has special healthcare needs. Like preparation, flexibility starts during planning and continues until you arrive back home. Let’s say you want to take your family on safari in Africa, but your child doesn’t travel well or you’re not sure if the menu has pureed foods to feed your child with pediatric feeding disorder. When you’re flexible, rather than seeing an obstacle, you see opportunities – bring your own food or a blender, talk with the travel company or the chef, go somewhere else, or start by driving up the road to a nearby wildlife or ammusement park! You may be comfortable with some flexibility in day-to-day activities, but it’s especially important when on vacation with a child that has special healthcare needs!
    4. Sense of Humor
      In addition to flexibility, having a sense of humor helps you have a successful holiday. When things happen on vacation – and they will – you have a choice: you can let it ruin your trip, or you can laugh about it. When the sixth person in a row tells you how to feed your child with PFD, or when the hotel room is so small you can’t fit the wheelchair inside, you can scream and rant or you can see it as a teaching opportunity. Explain what PFD is and why feeding your child is not the same as when they were feeding their children. Smile when you show the front desk clerk photos of your family member not being able to get in the room and ask for an upgrade.
    5. Choose Love not Fear
      Finally, when deciding whether or not to travel with a child that has special healthcare needs, choose love not fear. Go for it! Take that vacation! Heck, start small by going on a staycation, see how it goes and build from there. Going on a cruise is a great choice because they are typically very accessible (be sure to reserve an accessible cabin if someone in your party has a wheelchair) and the food choices are varied and flexible. All-inclusive resorts are also a good choice if you want a variety of activities and meals included without leaving the property. Car trips might be better than plane trips if you need to bring lots of equipment.

    6. Whatever you do, don’t be afraid to go out and have fun because you’re fearful of what others might say or do, or that you won’t be able to find the right food or a changing station for your teenage child. Plan. Prepare. Try new things. Smile. Laugh. Make memories. Maybe we’ll see you out there!

    NICU Graduates: On Track for Ongoing Feeding Success!

    Published by Allyson Goodwyn-Craine on May 28, 2019

    This article is reposted with permission from ASHA’s Leader Live blog and shares Sunnyside Medical Center’s three tracks to support feeding skills progression following the NICU.

    As each little feeder prepares to transition from our 20-bed, level III neonatal intensive care unit (NICU) to home, the interprofessional team assigns them one of three tracks to support their feeding skills progression. We do this as part of the rounds our team participates in together each day.

    This approach helps monitor feeding as babies mature, provides prompt intervention when needed, and supports our ongoing goal of reduced hospital readmissions associated with feeding.

    Here’s how each track works to support our smallest patients:

    Third track infants receive the guidance of our nurses and lactation nurses to advance their feeding skills. These babies are monitored through our general outpatient pediatrics services after discharge. The pediatrician, dietitian, and lactation registered nurse (RN) monitor the infant’s feeding progress. A neonatologist also calls to check in with the family shortly after discharge. If feeding concerns arise, any of these providers can initiate a referral for an outpatient feeding evaluation with a speech-language pathologist skilled in pediatric feeding and swallowing evaluation and treatment.

    Second track infants require a feeding plan generated by our NICU SLPs, occupational and physical therapists (OT/PT) to support their feeding skills. Prior to discharge, they also recommend an outpatient referral to an SLP for continued feeding evaluation. The outpatient SLP works in collaboration with the pediatrician, lactation RNs, and pediatric dietitians as the infant continues to mature.

    These infants benefit from specific and evolving interventions after discharge such as special positioning, pacing, or use of a special bottle/nipple they may soon outgrow. We might also make this type of referral for ongoing outpatient services to families who need added support to learn how to provide ongoing feeding intervention and support.

    First (or fast) track infants require advanced clinical feeding evaluation by the NICU SLP. These evaluations can include videofluoroscopic or modified barium swallow studies. We also make a plan for treatment to address highly complex medical or feeding concerns often associated with swallowing, craniofacial, cardiac, ongoing endurance, and respiratory conditions.

    Keeping the same NICU SLP—who follows the infant throughout their NICU course and develops first-hand knowledge of their feeding progress—creates seamless continuity of care during the transition to an outpatient with this same clinician. The SLP makes an initial outpatient feeding appointment for the infant “on the fast track” prior to discharge.

    Some infants receive this follow-up care as soon as three days post-discharge, while others can wait up to two weeks depending upon their needs. The NICU SLP continues to follow the infant for feeding as an outpatient as clinically indicated.

    Additional means of monitoring feeding progress

    Pediatricians, pediatric dietitians, lactation nurses, and outpatient SLPs are on the front line in working with our NICU graduates.

    All disciplines, including the outpatient SLPs, can provide phone, video, or in-office appointments based on the infant’s ongoing needs. Our hospital provides two types of NICU follow-up clinics: One has a neonatologist who monitors progress in collaboration with the infant’s pediatrician. Our multidisciplinary NICU follow-up clinic provides a neonatologist, physical and occupational therapists, pediatric dietitian, social worker and NICU/outpatient SLP. This team monitors overall development and continues to educate and support the family.

    Our low-birth-weight infants automatically quality for early intervention services. Anyone on the team can also generate early-intervention referrals when sensory, motor, or other developmental concerns are observed at any time along the way.

    Our outpatient pediatric feeding SLPs also receive feeding evaluation referrals from a variety of sources outside the NICU. We work closely with inpatient speech-language pathology colleagues at our local children’s hospitals when infants transfer to our care. In addition, area pediatricians, family practice physicians, lactation RNs, dietitians, head/neck surgeons, and motor therapists do a great job of monitoring feeding progression and weight trajectory in order to direct infants our way anytime they require additional clinical feeding support.

    It truly is a collaborative team effort to keep our smallest patients on track for feeding success!

    Allyson Goodwyn-Craine, M.S., CCC-SLP, BCS-S, works in the neonatal intensive care unit and outpatient rehabilitation services at Sunnyside Medical Center in Portland, Oregon. She is also an adjunct professor at Portland State University and a guest lecturer at Pacific University.

    Register Now: 2019 Virtual Town Halls

    Published by Feeding Matters on May 21, 2019

    Now that Feeding Matters’ PFD Alliance and thought leaders have convened at the 2019 International PFD Conference, the Feeding Matters’ Strategic Plan is available for public viewing. We maintain our commitment to transparency as we apply your voice to our strategic priorities.

    Please join us in the next phase of this process by participating in our 2019 Summer Town Halls. At these virtual events, you will receive strategic updates specific to the Advocacy, Education, and Research Pillars as well as ways you can engage in Feeding Matters’ work to help create a world in which children with pediatric feeding disorder thrive.

    Each virtual town hall is free to attend and open to the entire feeding community. If you are unable to join us on the actual day of the town hall, you can still register and watch the replay on your own schedule. Register for the town hall of your interest below:

    Education Pillar Town Hall – Pamela Dodrill, PhD, CCC-SLP (Pillar Chair) June 20, 2019 7:30 – 8:30 pm EDT

    Advocacy Pillar Town Hall – Erin Ross, PhD, CCC-SLP (Pillar Chair) July 11, 2019 7:30 – 8:30 pm EDT

    Research Pillar Town Hall – Hayley Henrikson Estrem, PhD, RN (Pillar Chair) August 29, 2019 7:30 – 8:30 pm EDT

    Do you have questions you want answered during the town hall? Or questions about these virtual events? Please contact us: pfda@feedingmatters.org.

    Can you say EOSINOPHILIC? (E-O-sin-O-fill-ik)

    Published by Feeding Matters on May 17, 2019



    The body’s immune system serves as its own internal ambulance, responding to crisis and triaging needs as they arise. Most times that rapid response works out just fine.

    But sometimes, the immune system can turn on the body, or become a little too overzealous with its treatment to a perceived emergency, which can lead to other problems. An eosinophilic disorder is one of those.

    Eosinophil-associated diseases are not only hard to pronounce, they are often difficult to diagnose due to a lack of awareness about the chronic digestive conditions. And that’s one of the reasons why National Eosinophil Awareness Week, held every year during the third week of May, is important.

    At Feeding Matters, we’re acutely aware of how eosinophilic disorders impact the lives of those living with them, from children to adults. And we understand how challenging it can be to navigate, treat, and manage a chronic condition that affects eating and feeding.

    Eosinophils are naturally-occurring white blood cells that, when they’re doing their jobs correctly, respond to allergy-triggering foods or allergens and release toxins to combat a reaction. But sometimes the body makes too many eosinophils.

    When they build up, beyond the normal 5-percent volume of a person’s white blood cells, they trigger inflammation. And that leads to tissue damage.

    Eosinophilic disorders are most often diagnosed in the esophagus, the stomach, the small and large intestines, or throughout the blood. Most eosinophilic disorders are endocrine or allergy-related and can affect the gastrointestinal, respiratory, and genitourinary tracts.

    As one would expect, symptoms associated with eosinophilic disorders range based on where the inflammation and tissue damage is occurring. But, a number of common symptoms include difficulty swallowing, food getting stuck in the esophagus while eating, persistent heartburn, abdominal pain, vomiting, diarrhea, and nausea.

    In children, eosinophilic disorders often result in a parent who experiences difficulty feeding and a child who has a difficult time eating. It is also noted that children who live with an eosinophilic disorder demonstrate a noticeable failure to thrive.

    Due to the type of symptoms that come with eosinophilic disorders, it isn’t uncommon for those living with it to miss work or school.

    While eosinophilic disorders are considered rare, it is an emerging problem worldwide and healthcare professionals are growing increasingly more aware of how the symptoms present themselves. Depending on the type of eosinophilic disorder, a diagnosis can come by way of a blood test, an endoscopy, or a biopsy of tissue. According to the American Academy of Allergy, Asthma and Immunology, physicians treat those diagnosed with an eosinophilic disorder by using a food elimination diet, corticosteroid medication to treat inflammation, and proton pump inhibitors to treat acid production in the stomach.

    To learn more about eosinophilic disorders, how they impact the lives of those living with them, and how to manage chronic conditions associated with them, the American Partnership for Eosinophilic Disorders is a great resource.

    FAACT(S) About Food Allergies

    Published by Feeding Matters on Apr 26, 2019

    Millions of people live with food allergies and the guessing game that comes with diagnosing them and avoiding the foods that trigger a reaction.

    It’s a well-documented struggle for adults who are able to communicate their symptoms and track their reactions to certain foods. But, it can be an exponentially more difficult road when parents are relying on a child to try and verbalize reactions that can’t be seen, such as respiratory difficulties and gastrointestinal issues.

    One of more than 300 conditions that put children at a higher risk for pediatric feeding disorder, food allergies can often be misconstrued as an intolerance to a certain food, general pickiness or other chronic conditions by those who don’t fully understand the gravity of the condition. That’s part of the reason why Feeding Matters so appreciates Food Allergy Awareness Week, recognized May 12-18. It allows for an opportunity to educate the public and it offers a space for conversations, tolerance and understanding.

    An estimated 6 million children are living with food allergies in the U.S., according to the Food Allergy and Anaphylaxis Connection Team (FAACT). And, only eight foods are responsible for 90% of all food allergies, according to FAACT. Statistics reported by the Journal for the American Medical Association indicate that shellfish, milk and peanuts are the top-three most common culprits of food allergies, followed by tree nuts, fin fish, eggs, wheat, soy and sesame.

    Someone who lives with a food allergy can suffer a number of reactions, ranging from a rash to severe respiratory distress. In fact, experts estimate that a food allergy sends someone to an emergency room once every three minutes. And, the situation seems to be escalating in recent years.

    Anaphylactic reactions have increased nearly 400 percent over a 10-year period between 2007 and 2016, and about 40 percent of children living with food allergies experience a severe and sometimes anaphylactic reaction, according to Food Allergy Research and Education (FARE).

    Those who are forced to navigate life with a food allergy are also required to maintain a pretty consistent state of vigilance. That’s one of the reasons that schools place restrictions on the types of treats that can enter a classroom, and why some airlines have stopped serving peanuts as mid-flight snacks.

    Knowing that trace amounts of an ingredient or cross-contamination could trigger a reaction, most people living with food allergies are advised to avoid buffets and deli stations, bakeries, ethnic restaurants because of potential language barriers, and Asian cuisine due to its liberal use of peanut-based foods and oils.

    It is, however, possible to eat out with a food allergy. As awareness of the condition improves, so too does general tolerance for it and those who live with it. Restaurants are increasingly providing allergy information on their menus, and relationships with servers and restaurant owners make those conversations easier to have.

    For more information about food allergies, we encourage you to visit these resources:
    Food Allergy and Anaphylaxis Connection Team
    Food Allergy Research and Education
    Kids With Food Allergies

    CONGENITAL HEART DISEASE + PEDIATRIC FEEDING DISORDER

    Published by Renee Bergeron on Feb 15, 2018

    For February, a time known for American Heart Month, National Wear Red day, and Valentine’s Day, Feeding Matters welcomes guest contributor Renee Bergeron, author of Little Earthling Blog. A mom of 14, Renee always dreamed of a peaceful home full of little feet, days spent on a lovely piece of property with a lush organic garden to supply our family’s needs. Instead, she “ended up with real, live children who often interrupt me, a black thumb and hunk of property that no one has time to keep up with.”

    When our son, Apollo, was diagnosed with a heart defect at 18 months old we weren’t shocked we were relieved. Apollo had been suffering from mysterious symptoms that puzzled the doctors. He had failure to thrive, loud, raspy breathing and poor sleep. He had already had his adenoids removed which had not improved his sleeping, eating, or breathing as the doctors had predicted.

    After a severe choking incident a MRI was ordered. That day we were told our son had a double aortic arch, a type of vascular ring. We were immediately plunged into the world of congenital heart defects. We were told he would need just a single, non-invasive surgery to repair the ring. We were told to expect a full recovering, immediate improvement in his eating and gradual improvement with his breathing.

    But it didn’t happen that way.

    Apollo’s first meal after his surgery was a success! He downed waffle pieces, a bit of egg, and some canned peaches. But by the time we were home two days later, his feeding issues were back. Apollo wanted to nurse constantly. Even though he was now 22 months old, he barely ate solid foods. Getting two or three bites in was a “good” meal. He grabbed at the food he saw on the table, would take a bite, and cry. I ended up spending most of my day nursing and trying to get bits of food into him.

    Apollo had struggled to eat from birth. Initially we thought he was sleepy from his c-section birth. Then, at two weeks old, he had his tongue tie clipped. He still struggled. We took him to the doctor again and again. At ten months old we took him to a children’s hospital where we were told he had severe reflux and was allergic to milk. We stopped all milk products, added in meds for reflux, and he still lost weight. He was tested for celiac and cystic fibrosis. Both came back negative, so we continued to struggle. At 10 months old Apollo was hospitalized with RSV and pneumonia. But none of that explained his eating issues. By his first birthday he was skinny, fussy, and still dropping off the growth curve.

    That is why, when he was diagnosed with congenital heart defect (and a “simple” one at that) we were relieved. But our story didn’t end after his “non-invasive” surgery. Six weeks after his surgery to divide the ring, he was in the hospital again where, over a five day period, a slew of tests were run on our curly-haired toddler. An Upper GI finally revealed an answer to his feeding struggles. The vascular ring had left a diverticulum (pocket of blood) that was compressing his esophagus. That same day we made the decision to have a feeding tube placed and a week later the surgery was done.

    We never gave up on our son being able to be tube-free. Our immediate concern was to help him gain weight and get “full” after a feeding for the first time in his life. Adjusting to life with a tube-fed toddler wasn’t easy but we did it. I made it my personal goal to never have a day pass without him eating something orally.

    We were told Apollo might have a feeding tube for the rest of his life. So we adjusted our expectations. We bought a large, sturdy stroller to take him hiking and camping. We tube-fed him where ever we happened to be. We were determined that he would not miss out on life.

    Eventually, it took two more surgeries, a year of feeding therapy, patience and prayers, but at age six-and-a-half, and midway through first grade, our son had his feeding tube removed.

    Today Apollo is a healthy seven-year-old who loves LEGO, books, pizza, chips, and ice cream.

    * * *

    If you have a child with pediatric feeding disorder, feeling overwhelmed is not unusual. Feeding Matters is committed to providing parents with the support and resources they need to deliver the best care to their children, including our parent-to-parent coaching program and on-demand knowledge center.

    For more information about CHD, please visit the American Heart Association’s page on congenital heart disease.

    THE POWER OF TWO

    Published by Feeding Matters on Mar 21, 2018

    Parents of infants and children with pediatric feeding disorder may feel isolated and overwhelmed with the medical, emotional, financial, educational and social issues they face as they raise their child. In today’s video blog, Pinali Agrawal tells her experience with the Power of Two program. “It literally opened up a whole different world to me. I had been searching for such a long time, since my son was born, to try to find a group,” Pinali describes. “I was so thankful to find Feeding Matters and the Power of Two.”