Formula Concerns & Availability

by: Easterseals DuPage & Fox Valley Nutrition Team

Given the shortage of formula in the country (a combination of supply chain issues and product recalls), we know many families are looking to us for help. We understand the ability to feed your child shouldn’t be a concern. For many, this is a scary and anxious time. It has been hard during our nutrition evaluations to recommend any specific type of formula, as the availability is hard to control. A can today may not be available the next time you need it. No one should be without the nutrition they need, and we are here for you.

To help, we have talked with all of our formula contacts to give you resources to find formula and recommendations. We did our best to get you access and an insider view on what steps you can take. Scroll to the manufacturer you need for QR codes, guides to switch formula and more.

We know that manufacturers and legislators are doing everything possible to make more options available. But it will still take 6-8 weeks to get availability at a more comfortable level. In the meantime, please only take what you need for a week or two. Leave formula, especially specialty formula for children with allergies, on the shelf for those that truly need it. And please don’t dilute formula to make it last longer. This results in a lack of nutrition and not enough calories for infants. This can have serious consequences, such as increase risk of seizure.

Finally, please be cautious with recipes that are floating around to make your own baby formula, without consulting with a medical professional first. Many homemade recipes contain ingredients that are not safe for young infants, are low in calories, and are not nutritionally complete. Feeding a baby homemade formula can cause problems with growth and nutritional deficiencies.

About Formula & Brands

Just like adults, babies need protein, fat, and carbohydrates in their diet. Infant formulas sometimes differ in which specific proteins, fats, and carbohydrates they feature. Breast milk has two protein sources: whey and casein. Some infant formulas have both of these proteins, while others only have whey. All meet the FDA’s requirements. Similarly, infant formulas can differ in the type of fat they use. All infant formulas sold in the U.S., whether they are name-brand or store-brand, must meet the FDA’s standards to ensure proper nutrition for your baby.

Generic or store brand infant formulas are very similar to national brands. They even use similar marketing terms, including:

• Advantage = Advance
• Gentle = Gentlease
• Sensitivity = Sensitive
• Tender = Gentle

Most store-brand baby formulas contain DHA and ARA, prebiotics, and nucleotides, just like brand-name infant formulas. Almost all—including store brands made for Walmart (Parent’s Choice), Target (up & up), Walgreens (Well Beginnings), and Kroger (Comforts for Baby), etc.—are made by the same manufacturer: Perrigo Nutritionals. Read more from verywellfamily.

Some children have no issues with transitioning to a new formula, while others may need a little time to adjust. For some children, new adjustments to their diet may cause gastrointestinal (GI) changes. If you need support for your baby’s allergies, constipation or other emerging GI issues, please contact a pediatric dietician for support.

Due to the shortage, now may be the time to move a toddler or older child off of formula and transition to another option. We know this change can be scary. But many families have found this has been a needed push with a beneficial outcome.

See below for a formula comparison chart that you can use to find comparable formulas if your usual brand is sold out. Again, generic brands are perfectly okay to feed your baby.

From Feed to Succeed LLC

Online Support

The support from communities to help those in need of formula is so heartwarming. Consider reaching out to friends and family to help find formula for your baby as they shop. Purchasing donor breast milk from your local milk bank, may be an option. While there is a high demand they are also experiencing more donations of extra milk. One such resource is the Mothers’ Milk Bank of the Western Great Lakes.

Use caution with milk sharing or buying milk over the internet from places other than an official milk bank as these may contain contaminants. If someone is offering extra formula they no longer need, please be sure the formula is not expired and has been stored in a temperature controlled location (i.e. not in a garage).

Instacart is a helpful resource that shows where formula is on shelves. You don’t have to shop on Instacart, but use as a locater in your area.

Community Facebook groups like local Mom Groups, parenting groups and more can help share tips or resources for formula. Chicagoland Formula Finders is a recent and helpful resource for many.

Formula Availability

Scroll down to find more information from Enfamil, Gerber, Kate Farms, Nutricia, Similac and WIC programs (alphabetized).

Enfamil

Enfamil.com has a store locater that is updated three times a day. They also share this qr code and product comparison chart below.

Nutramigen is an extensively hydrolysed formula for the dietary management of infants with mild to moderate cow’s milk allergy. It is hypoallergenic, which means it has been specially formulated to not cause allergic reactions in most infants with cow’s milk allergy. This formula has been more available at this time, but please only purchase if necessary.

At Reckitt/MJN, we see this as a very serious issue, because we understand the responsibility we have in making the single source of nutrition for so many infants, therefore can be no short cuts for this vulnerable population. Our manufacturing facilities are operating 24/7. This has allowed us to supply 30% more product to market YTD, which allows us to provide formula to an additional 200,000 babies per month since the Abbott recall occurred.

It is important to note our manufacturing is near pharmaceutical grade and quality and safety are paramount. Our goal is to get as many feedings to shelf as possible, but our highest priority are those mothers and infants in the WIC program as they are the most vulnerable in our society. Where Abbott can no longer meet their commitments, we are filling the gap as much as we can.

We’re continually looking for more ways to increase supply, while ensuring the highest levels of safety and quality. We’re also working closely with President Biden, the FDA, and the USDA to expedite approval for us to use a factory outside of the U.S., access key ingredients, and make it easier to ensure the most vulnerable babies have access to the formula they need. We know parents and caregivers are concerned about formula supply on the shelves, we are working with our retail partners to support limiting purchases to 1- week supply per household and always recommend buying formula from a reputable source.

This is the highest priority for us as a company and the entire industry. We are confident that by working together and remaining focused on this problem, we will solve it, ensuring that parents and infants have access to the nutrition that they need.

Helping Hand for Special Kids Program

This program can help with a one time gift of formula in cases of financial assistance or multiple births. With help from a medical professional or one of our dieticians, choose from one of the three applicable programs. Offer is limited to one formula gift per household, per birth. Programs and offers subject to change without notice. Only parents and/or legal guardians who meet offer qualifications are eligible. View the program application.

Gerber

While we are a small player in the U.S. infant formula market, we are absolutely committed to doing everything we can to help get parents and caregivers the formula they need so their babies can thrive. We have significantly increased the amount of our infant formula available to consumers by ramping up production and accelerating general product availability to retailers and online, as well as in hospitals for those most vulnerable. We are also working through our Parent Resource Center, website, social media and industry groups to help make sure essential information is available for those parents and caregivers seeking it.

Demand for Gerber formula has increased due to a national infant formula shortage. This increased demand may result in some temporary out of stock issues at certain stores. Each retailer has the best estimate of when specific products will be on their shelves. For information about which retailers in your area carry Gerber formula, you can visit https://www.gerber.com/shop-by-product/formula.

While individual stores may be temporarily out of stock, it should return soon, or you can order from our website.

Our Parent Resource Center is available 24/7 to help parents with any feeding queries, including help in finding our formulas and suggesting recommended alternatives, as it is generally okay to switch routine infant formula brands (800-4-GERBER). If an infant is on a specialty formula for a medical condition or for treatment of allergy, switching infant formula should be discussed with your health care provider before doing so.

Kate Farms

We understand that patients, caregivers, and healthcare professionals are pressed to find alternatives. Kate Farms formulas may be a solution for patients affected by the Abbott recall. Our formulas are only for children one and up, but could be appropriate for kiddos aging out of an infant formula including those who are appropriate for a peptide challenge and were formerly on an amino acid product. Below are a a few crosswalk tools which show which Kate Farms products would be considered “equivalent”, and we have a dedicated out of stock webpage here:  https://www.katefarms.com/customer-service/out-of-stock-support/.

The Nutritional Applications Pediatric Formulas is also a helpful resource to show what may be appropriate by disease state.  The pediatric transition guide is also helpful for tube fed patients. Learn more about transitioning to a new formula with this guide in partnership with a Registered Dietician.

Kate Farms formulas:          

• Indicated for ages 1 and up
• No common allergens. Do not contain milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, or soybeans —but are not tested to be hypoallergenic
• Unlike powdered formulas, Kate Farms formulas use aseptic processing and are commercially sterile
• Offer pediatric peptide formulas made with organic hydrolyzed pea protein (HCPCS B4161) and pediatric standard formulas made with organic intact pea protein (HCPCS B4160)— not amino acid or elemental
• Nutritionally complete, taste great, and designed for oral or tube feeding (flow smoothly through tubes down to 6.5 Fr)
• Eligible for insurance coverage: Medicare, Medicaid, private plans, and select WIC* programs
• Samples arrive within two days to healthcare offices or patient homes at the request of a healthcare professional. Visit katefarms.com/samples.

Kate Farms formulas are broadly eligible for insurance. Your home medical supplier will check your coverage and ship Kate Farms to you. Or you can purchase any one of our formulas online with free 2-day shipping at katefarms.com.

Nutricia

We offer nutritional solutions that positively impact the health from early life and onwards into old age.

1. Nutricia Navigator contains information on the service which can investigate coverage options and locate DMEs or pharmacies in their area that may have product available. 
2. Neocate.com.  Always provides updated information on ordering directly from Nutricia. Parents can enter in their email addresses to receive a notification when it is back in stock at Nutricia.
3. Walgreens.com.  They will indicate if they have availability in any store.  If they see it is available, you can call the store first before going. 

Similac

For families whose babies require specialty, metabolic formulas, the FDA recently informed Abbott Nutrition that the agency has no objection to releasing urgent, life-sustaining supplies of certain specialty and metabolic formulas on a case-by-case basis. Abbott has established a request line for patients and caregivers seeking access to their specialty formulas: 1-800-881-0876.

We know that our recent recall caused additional stress and anxiety in an already challenging situation of a global supply shortage. We are working hard to help moms, dads and caregivers get the high-quality nutrition they need for their babies.

Abbott is working closely with the FDA to restart operations at the Sturgis, Mich., facility. We continue to make progress on corrective actions and will be implementing additional actions as we work toward addressing items related to the recent recall. In the meantime, we are working to increase the supply of infant formula by prioritizing infant formula production at our facilities that provide product to the U.S. market.

Below is a QR code that is updated regularly to show availability of infant formulas at different large box stores. More will be available in the next few weeks.

WIC

We have a special obligation to WIC families. About one-half of babies born in Illinois participate in WIC in the first year of their lives. We will continue to do everything possible to safeguard their development and access to safe, nutritious formula.”

said IDHS Secretary Grace B. Hou

The state of Illinois is taking a series of steps in response to the current, nationwide infant formula shortage. Senate unanimously passed the House’s bill to add flexibility to WIC benefits. The federal nutrition program for women, infants, and children is the largest infant formula buyer in the country — making up about half of all formula purchases. The approved legislation would waive the contract requirements for emergencies (like during a formula shortage), and allow mothers to purchase other formulas available without having to pay out of pocket.

In coordination with the USDA Food & Nutrition Service, Illinois retailers are being encouraged to set aside formula for low-income families enrolled in the Special Supplemental Nutrition Program for Women, Infants, and Children program.

The Illinois Department of Human Services has also trained caseworkers to assist families with formula questions. The IDHS Help Line at 1-800-843-6154.T he Help Line is designed for Supplemental Nutrition Assistance Program and WIC customers primarily but is open to all residents of Illinois. Read more here.

For more information on our Feeding Clinic, nutrition and feeding services, visit: https://www.easterseals.com/dfv/our-programs/medical-rehabilitation/nutrition-therapy.html.

Nutrition/Feeding Clinic at Easterseals DuPage & Fox Valley –The Comprehensive Approach

By – Cindy Baranoski, MS, RDN, LDN and Laura Van Zandt OTR/L

-Updated February 2023-

In January 2019, a groundbreaking article was published in the Journal of Pediatric Gastroenterology and Nutrition describing children challenged with feeding problems and their care. Pediatric Feeding Disorders (PFD) is the term the expert team of authors define as “impaired oral intake that is not age-appropriate, and is associated with medical, nutrition, feeding skill, and/or psycho-social dysfunction.” It establishes the basis for creating and implementing a medical diagnosis code that would support children identified as having problems in any of these four areas, which are impaired by or impairing a child’s ability to eat a diet that is expected for age.

It concludes with the primary need for children to be identified early and receive interdisciplinary evaluations and interventions instead of seeing one practitioner alone to try and help all areas. Interdisciplinary thinking, evaluations, and treatment have been the core practice of Easterseals DuPage & Fox Valley’s Feeding Clinic for the past 21 years, since its inception in 2000.

What Brings You Here

From the moment we are born, feeding and eating is something that is supposed to come naturally to everyone. When a baby is born, we feel an overwhelming sense of love and a strong desire to watch over, protect, and nourish to grow. When it’s time for feeding, our bodies are already preparing the necessary tools to breakdown and process what is provided. Feeding involves more than just our mouths. At play are the sights (color, shape, size), feelings (warm, hot, cold, crunchy, chewy, soft, sticky), smells (sweet, stinky), sounds (loud, quiet), and most significantly, the way our body works. From how our muscles work together to align our trunk in sitting, allowing our arms to reach, grasp, and explore, to coordination of suck, swallow, and breathe, and manipulating the food in our mouths, everything sets the foundation for a good relationship with mealtimes and foods. Our past and current experiences all shape our belief around feeding and nutrition. Your body must work all together to receive and process nourishment.

For some children, however, this process isn’t easy and doesn’t always come naturally. Many children struggle to coordinate their bodies to eat or drink and have GI systems that do not process foods well, leading to constipation, diarrhea, vomiting, and gastroesophageal reflux, which then leads to poor growth, frustrations, fear, and worry. For children with respiratory conditions, poor coordination of breathing, overall weakness, eating a meal like other children their age is nearly impossible. Yet, they still need what other children need – nourishment, socialization, variety, scheduled mealtimes, and interaction with foods. For children, who may be fed through a tube, eating may not be the primary mode of nourishment, but all the other factors promote development, health, and good growth.

As a parent, there is nothing more important than watching your child grow and thrive, and nothing is more heart-wrenching than watching them struggle. When a child does not eat, parents feel blame and guilt. We ask ourselves why? Did I do this? What could I have done differently? We try a host of different strategies. We Google and seek advice from family, friends, and medical providers. We fall back to what we know, which may or may not work.

Who We Are

Our Feeding Clinic at Easterseals DuPage & Fox Valley consists of a team of individuals who have a passion for helping kids with feeding, mealtimes, tolerance, health, and growth. Our team assesses the many different reasons why a child might be struggling. We are not just looking at their ‘behavior’ but dig deeper and aim to understand the core source of the behavior and what it is communicating. Eating is so much more than bringing food to the mouth, chewing, and swallowing.

Our Clinic consists of a registered dietitian nutritionist, speech and language pathologist, occupational therapist, and a social worker. The team has over 230+ years of combined expertise and has gone on for extensive training in many areas, such as NeuroDevelopmental Therapy (NDT), Sequential Oral Sensory (SOS) Approach, DIR/Floortime, Respiratory and Rib Cage Development, Homeopathy, and Chinese medicine.

As a team, we review your child’s birth and developmental history before the appointment, with a thorough analysis of the diet record you submit. We ask you to let us know your evaluation expectations when filling out the paperwork, both online and written forms. Our goal is to meet these expectations. During the actual meeting we are looking and listening for red flags that clue us into issues driving the challenges your child is having. A list of possible reasons why your child might be seen by our feeding clinic is found in Table 1.

Table 1

What Happens, What We Do, and What’s Next

At Easterseals DuPage & Fox Valley, we are able to evaluate a child at our Villa Park center or through tele-therapy. Keeping our clients, their families, and our staff safe is a number one priority while continuing to be one of the most impactful Feeding Clinics around. Our clinic has been providing virtual evaluations since April 2020, and our use of HIPPA compliant Microsoft Teams platform has allowed everyone to participate fully. When your child is referred for an evaluation by the team, our Clinical Admissions Coordinator will guide you through our secure system of the intake process. We have revamped the process to make it easier for you and provide written suggestions to help you prepare for the evaluation day. If you are receiving a virtual consultation, we offer tips on setting up your space to allow a more successful evaluation of your child with the least amount of stress for you.

During the interdisciplinary evaluation, the full team meets with your family. Engaging with and helping your child feel comfortable, the speech and language pathologist and occupational therapist will give suggestions while listening and performing their physical assessment. We have worked hard to create a safe, calm, effortless process to continue to successfully support our Feeding Clinic evaluations, which continue to be very much in demand. Parent’s positive comments and impactful outcomes of our evaluations speak for themselves.

Medical & Nutrition

First the team reviews and establishes your child’s medical health and overall nutrition status. Many medical complications from birth can impact a child. Undiagnosed medical and gastrointestinal (GI) problems often come to light in the clinic.

Think of your child’s health as the foundation of your house. If your foundation is weak, then the floors above it will compensate for weakness. If your child struggles from constipation, diarrhea, dysmotility, gagging, GE reflux, they are most likely subconsciously learning to connect food and drink to feeling poorly. Additionally, understanding your child’s nutrition helps the team understand what might be contributing to what is not medical, allowing the team to make appropriate recommendations to ensure optimal growth and health. Analysis of current nutrition includes what is expected for your child, balance, the timing of meals/snacks, calories, protein, fluid, hydration, vitamins/minerals, route of nutrition, and growth. Understanding both medical health and nutrition status allows for changes from the foundation first and foremost.

Speech and Language Pathology & Occupational Therapy

Observing how your child interacts and engages during the evaluation can help the speech and language pathologist and occupational therapist before they move on to assess the physical portion of eating and drinking. No matter where your child is in their journey with food and feeding, our goal is to have a positive relationship during the process. While observing your child, both therapists also look at their underlying motor skills and evaluate if any postural supports might be beneficial. Mary Massery, a well-known physical therapist, has said “breathing always wins”, and she is not wrong. Breathing dominates. Where your body is in space and stability is its second priority. Swallowing and feeding behavior must continually adapt to changing respiratory and postural systems.

The speech and language pathologist works to get a better sense of your child’s oral motor skills while the occupational therapist observes potential underlying sensory processing difficulties and relationship issues with food. Anxiety around meals and feeding can increase adrenaline which suppresses our desire to eat. Assisting with overall regulation is essential for comfort at mealtimes.

Family Support

The emotion with feeding and nutrition difficulties can be overwhelming for both the parents and child. Often, a child’s survival from birth and medical health is the primary focus, as it should be. When a child becomes more stable, a parent can start to see beyond the medical fears and begin to focus on other things such as the experience of feeding. With this new focus, the emotions, fear, concerns, and hope are still there. Whether your child is struggling to be an oral eater or being fed by tube, the emotions can be immobilizing. Our social worker is a vital team member in our clinic, helping every parent know they are not alone. She provides support, empathy, and connections to any number of resources.

Wrapping Up

By the end of the evaluation, the team confers together, with immediate and long-term recommendations being made. Often, these recommendations focus on gut health, breathing, positioning, or establishing improved nutrition, before working on some of the more therapeutic needs such as oral motor skills or sensory processing/relationship interactions. Sometimes recommendations are made to work on several key things simultaneously to help your child be more clinically stable, or a single recommendation that may be central to all other concerns identified. Returning to our 90-minute clinic for a follow-up visit may be one of the recommendations made.

Final Thoughts

Wherever you are at in your child’s journey, there are many aspects to feeding disorders in the pediatric population. Therefore, identifying and addressing all of them is a priority that should not be overlooked. Easterseals DuPage & Fox Valley’s Feeding Clinic has been and continues to view your child and his care from this interdisciplinary “Pediatric Feeding Disorders” approach, involving a skilled and expert team of professionals. Nutrition issues is an area that brings an enormous amount of stress and anxiety to a child and his caregivers. Our team is uniquely qualified and experienced to assist children at all levels of feeding, instilling hope and helping them be their very best.

Every child is unique, and each intervention is tailored to fit your child and family. While you research options you have, consider the following –

• Aim to help your child feel their best. They need to feel well – this is key for success in any area.
• Assess their positioning with mealtimes and feeding to be sure they are fully supported. Positioning is key. Seated on a firm surface with feet flat on the floor or chair rail, with head and shoulders aligned over hips, equal weight bearing, is the most optimal positioning. Allow her arms to rest on her tray or table with shoulders down.
• Ensure a regular schedule. Regardless of if your child is orally fed or through a tube, a mealtime plan is essential, and helps your child learn hunger and fullness, allows their bodies to sustain through the day, can improve their overall tolerance, and should have a positive beginning and end.
• Patience – feeding therapy is a journey with bumps and curves along the road. Share your compassion and empathy. Learning to eat and mealtimes, after a rough beginning, might involve reshaping many memories. You might have to start over to build trust. Remember even the tortoise finished the race with the hare.
• Expose, expose, expose and don’t limit opportunities for exposure. Have fun and play with food. Model appropriate food reactions – don’t “yuck someone else’s yum.” Continue to find ways to present food to your child even if he is not ready to taste them. You can read books together about food, visit different grocery stores and markets, kids cooking classes, and find ways to get them involved in mealtime preparation without eating. And we encourage this, if a child is tube fed too.

To learn more on our Feeding Clinic and Nutrition Department at Easterseals DuPage & Fox Valley visit our website at: https://www.easterseals.com/dfv/our-programs/medical-rehabilitation/specialized-clinics/feeding-clinic.html.  Contact Clinical Admissions at 630.261.6287 for questions or to schedule an appointment. 

Nutrition/Feeding Clinic at Easterseals DuPage & Fox Valley –The Comprehensive Approach

By: Laura Van Zandt, MS, OTR/L & Pediatric Nutrition Therapist Cindy Baranoski MS, RDN, LDN

In January 2019 a groundbreaking article was published in the Journal of Pediatric Gastroenterology and Nutrition describing children challenged with feeding problems and their care. Pediatric Feeding Disorders (PFD) is the term the expert team of authors define as “impaired oral intake that is not age-appropriate, and is associated with medical, nutrition, feeding skill, and/or psycho-social dysfunction.” It goes on to establish the basis for creation and implementation of a medical diagnosis code that would support children identified as having problems in any of these four areas, which are impaired by or impairing a child’s ability to eat a diet that is expected for age.

It concludes with the primary need for children to be identified early, and receive interdisciplinary evaluations and interventions, as opposed to seeing one practitioner alone to try and help all areas. Interdisciplinary thinking, evaluations, and treatment have been the core practice of Easterseals DuPage & Fox Valley’s Feeding Clinic the past 20 years, since its inception in 2000.

What Brings You Here

From the moment we are born, feeding and eating is something that is supposed to come naturally to everyone. When a baby is born, we feel an overwhelming sense of love and a strong desire to watch over, protect, and nourish to grow. When it’s time for feeding, our bodies are already preparing the necessary tools to breakdown and process what is provided. Feeding involves more than just our mouths. At play are the sights (color, shape, size), feelings (warm, hot, cold, crunchy, chewy, soft, sticky), smells (sweet, stinky), sounds (loud, quiet), and most especially, the way our body works. From how our muscles work together to align our trunk in sitting, allowing our arms to reach, grasp, and explore, to coordination of suck, swallow, and breathe, and manipulating the food in our mouths, everything sets the foundation for a good relationship with mealtimes and foods. Our past and current experiences all shape our belief around feeding and nutrition. Your body must work all together to receive and process nourishment.

For some children, however, this process isn’t easy and doesn’t always come naturally. Many children struggle to coordinate their bodies to eat or drink, have GI systems that don’t process the foods well leading to constipation, diarrhea, vomiting, GE reflux, which leads to poor growth, frustrations, fear, and worry. For children with respiratory conditions, poor coordination of breathing, overall weakness, eating a meal like other children their age is nearly impossible. Yet, they still need what other children need – nourishment, socialization, variety, scheduled mealtimes, and interaction with foods. For these children, who may be fed through a tube, eating may not be the primary mode of nourishment, but all the other factors play into what promotes development, health, and good growth.

As a parent, nothing is more important than watching your child grow and thrive, and nothing is more heart wrenching than watching them struggle. When a child doesn’t eat, parents feel blame and guilt. We ask ourselves why? Did I do this? What could have I done differently? We try a host of different strategies. We Google and seek advice from family, friends, and medical providers. We fall back to what we know, which may or may not work.

Who We Are

Our Feeding Clinic at Easterseals DuPage & Fox Valley consists of a team of individuals who have a passion for helping kids with feeding, mealtimes, tolerance, health, and growth. Our team assesses the many different reasons why a child might be struggling. We are not just looking at their ‘behavior’, but dig deeper and aim to understand the core source of the behavior and what it is communicating. Eating is so much more than bringing food to the mouth, chewing, and swallowing.

Our Clinic consists of a pediatric gastroenterologist/integrative medical practitioner, registered dietitian nutritionist, speech and language pathologist, occupational therapist, and parent liaison. The team has over 230+ years of combined expertise, and have gone on for extensive training in many areas, such as NeuroDevelopmental Therapy (NDT), Sequential Oral Sensory (SOS) Approach, DIR/Floortime, Respiratory and Rib Cage Development, Homeopathy, and Chinese medicine.

As a team, we review your child’s birth and developmental history prior to the appointment, with a thorough analysis of the diet record you submit. We ask you to let us know your expectations of the evaluation when filling out the paperwork, both online and written forms. Our goal is to meet these expectations. During the actual meeting we are looking and listening for red flags that clue us into issues driving the challenges your child is having. A list of possible reasons why your child might be seen by our feeding clinic is found in Table 1.

Table 1

• 

What Happens, What We Do, and What’s Next

During the interdisciplinary evaluation, the full team meets with the family. Engaging with and helping your child feel comfortable in the room, the speech and language pathologist and occupational therapist are also listening while beginning to perform a physical assessment.

Medical & Nutrition

First the team reviews and establishes your child’s medical health and overall nutrition status. Many medical complications from birth can impact a child. Undiagnosed medical and gastrointestinal (GI) problems often come to light in clinic.

Think of your child’s health like the foundation to your house. If your foundation is weak, then the floors above it will compensate for weakness. If your child is struggling from constipation, diarrhea, motility, gagging, GE reflux, then most likely they are subconsciously learning to connect food to feeling poorly. Additionally understanding your child’s nutrition, assists the team in understanding what might be contributing to what is not medical, allowing the team to make appropriate recommendations to ensure for growth and health. Analysis of current nutrition includes what is expected for your child, balance, timing of meals/snacks, calories, protein, fluid, hydration, vitamins/minerals, route of nutrition and growth. An understanding of both medical health and nutrition status, allows for changes from the foundation first and foremost.

Speech and Language Pathology & Occupational Therapy

Observing how your child interacts and engages during the evaluation can help the speech and language pathologist as well as occupational therapist, before they move on to assess the physical portion of eating and drinking. Our goal, no matter where your child is in their journey with food and feeding, is to have a positive relationship during the process. While observing your child, both therapists are also looking at their underlying motor skills and evaluating if any postural supports might be beneficial. Mary Massery, a well-known physical therapist, has said “breathing always wins”, and she is not wrong. Breathing dominates. Where your body is in space and stability is its second priority. Swallowing and feeding behavior must continually adapt to changing respiratory and postural systems.

When your child sits down with the therapists, it is about getting a better sense of your child’s oral motor skills from the speech and language pathologist. The occupational therapist is observing potential underlying sensory processing difficulties and relationship issues with food. Anxiety around meals and feeding can increase adrenaline which suppresses our desire to eat. Assisting with overall regulation is important for comfort at mealtimes.

Social Services

The emotion with feeding and nutrition difficulties can be overwhelming for both the parents and child. Many times, a child’s survival from birth and medical health is the primary focus, as it should be. When a child becomes more stable, a parent can start to see beyond the medical fears and begin to focus on other things such as independent feeding. With this new focus, the emotions, fear, concerns, and hope are still there. Whether your child is struggling to be an oral eater or being fed by tube, the emotions can be immobilizing. Our parent liaison is a vital team member in our clinic, helping every parent know they are not alone. She provides support, empathy and connections to any resources.

By the end of the evaluation, the team confers together within the same space as your family, and immediate and long-term recommendations are made. Often, these recommendations focus on gut health, breathing, positioning, or establishing improved nutrition, before working on some of the more therapeutic needs such as oral motor skills or sensory processing/relationship interactions. Sometimes recommendations are made to work on several key things simultaneously to help your child be more clinically stable, or a single recommendation that may be central to all other concerns identified. Returning to our 90 minute clinic for a follow up visit, may be one of the recommendations made.

Final Thoughts

Wherever you are at in your child’s journey, there are many aspects to feeding disorders in the pediatric population. Therefore identifying and addressing all of them is a priority that should not be overlooked. Easterseals DuPage & Fox Valley’s Feeding Clinic has been and continues to view your child and his care from this interdisciplinary “Pediatric Feeding Disorders” approach, involving a skilled and expert team of professionals. Nutrition issues is an area that brings an enormous amount of stress and anxiety to a child and caregivers. Our team is uniquely qualified and experienced to assist children at all levels of feeding, instilling hope and helping them be their very best.

Each child is unique, and each intervention is tailored to fit your child and family. While you research options you have, consider the following –

• Aim to help your child feel their best. They need to feel well – this is key for success in any area.
• Ensure your child is receiving sound nutrition, regardless of what they are currently receiving. There are many ways around getting your child good nutrition.
• Assess their positioning with mealtimes and feeding to be sure they are fully supported. Positioning is key. Seated on a firm surface with feet flat on the floor or chair rail, with head and shoulders aligned over hips, equal weight bearing, is the most optimal positioning. Allow her arms to rest on her tray or table with shoulders down.
• Ensure a regular schedule. Regardless if your child is orally fed or through a tube, a mealtime plan is essential, and helps your child learn hunger and fullness, allows their bodies to sustain through the day, can improve their overall tolerance, and should have a positive beginning and end.
• Patience – feeding therapy is a journey with bumps and curves along the road. Share your compassion and empathy. Learning to eat and mealtimes, after a rough beginning, might involve reshaping many memories. You might have to start over to build trust. Remember even the tortoise finished the race with the hare.
• Expose, expose, expose and don’t limit opportunities for exposure. Have fun and play with food. Model appropriate food reactions – don’t “yuck someone else’s yum.” Continue to find way to present food to your child even if he/she is not ready to taste them. You can read books together about food, visit different grocery stores and markets, and find ways to get them involved in mealtime preparation without eating.

To learn more on our Nutritional Feeding Clinic visit our website at: https://www.easterseals.com/dfv/our-programs/medical-rehabilitation/specialized-clinics/feeding-clinic.html. And contact our Intake Coordinator at 630.261.6287 or mscholtes@eastersealsdfvr.org to ask questions or schedule an appointment for a feeding evaluation. 

What is Tongue-Tie and How is it Treated?

By: Valerie Heneghan, M.A. CCC-SLP/L

The topic of tethered oral tissues or tongue/lip tie is evolving and controversial among professionals in the medical field.  The controversy often stems from first diagnosis. Is it truly a tethered oral tissue? And second the remediation. Is surgery necessary or is the child able to compensate without intervention? 

As a parent, I know it is a difficult decision as you want the best for your children.  You want to support your child’s development without unnecessary medical procedures.  My suggestion is to work with a professional who has experience in this area who can discuss these considerations and how they impact your child specifically. 

When discussing considerations regarding tethered oral tissues (e.g., tongue, lip, and cheek) it is important to include these 4 components:  

1. Symptoms of mother/infant
2. Mobility
3. Function
4. Location

The conversation on whether to move forward with medical intervention should include symptomology, structures, and function.  One child upon visual inspection may look to have a tethered oral tissue without any symptoms. While another child may have a tethered oral tissue that is not as visually apparent, however may have several symptoms impacting activities of daily living.

Below are interdisciplinary symptoms that could potentially be attributed to tethered oral tissues that you may want to consider:

• Breastfeeding issues: Nipple pain, difficulty latching, inefficient nursing (e.g., feeding until becomes fatigued rather than full, nursing around the clock, etc.)
• Lack of weight gain or growth
• Difficulty moving to solid foods or won’t tolerate a variety of foods
• Difficulty with cup, straw or bottle drinking
• Delayed production of single words or imprecise articulation
• Dentition (e.g., gap in front teeth) or malocclusion
• Open mouth posture or congestion
• Asymmetrical motor skills (e.g., preference for one side at young age) or Torticollis
• Issues with sensory regulation, fine motor skills or vision
• Coordination or balance issues
• Gut Health issues or GERD
• Sleep apnea

What are the next steps? 

It is important to find a medical professional who has experience in this area. A Pediatrician, ENT, or Dentist can diagnose a tethered oral tissue.  Often a Speech-Language Pathologist or Lactation Consultant may be referred, as these professionals work closely with oral motor skills therapeutically.

If a frenectomy (i.e., surgical cut to release the frenulum) is warranted, seek a medical professional (e.g., ENT or Dentist) who has experience in the following:

• Has knowledge and expertise in releasing tethered oral tissues  
• Recommends post-surgical program (i.e., stretches, therapeutic feedings, etc.)
• Procedural experience using both scissor and laser for best possible outcome.

For more information on Easterseals DuPage & Fox Valley Speech-Language services, including those that treat children with Tongue Tie conditions, visit: http://www.easterseals.com/dfv/our-programs/medical-rehabilitation/speech-language-therapy.html

Help children receive the nutritional therapy they need!

By: Cindy Baranoski, MS, RDN, LDN – Pediatric Nutrition Therapist

Excellent nutrition is one of the most basic requirements for a child to grow and thrive. A study published by Pediatrics found that diagnosis-specific, structured approaches to nutrition issues among children with developmental disabilities significantly improved energy consumption and nutritional status. Yet, nutrition disorders and compromised nutritional status are very frequent among children with developmental disabilities.

Research shows that as many as 90% of children with a developmental disorder have at least one nutrition risk indicator. Nutrition problems can include failure to thrive, obesity, poor feeding skills, sensory disorders, and gastrointestinal disorders, to name only a few. Individuals with special needs are also more likely to develop co-existing medical conditions that require nutrition interventions.

Thanks to two significant grants from Hanover Township Mental Health Board and Special Kids Foundation, Easter Seals DuPage & Fox Valley can now offer nutrition services for children, regardless of insurance, in areas currently underserved immediately north and west of DuPage County. This includes full financial support for those uninsured, underinsured or on Medicaid; and partial support for those in Early Intervention or with insurance. Children who qualify will receive a nutrition evaluation and follow up nutrition therapy as needed.

Qualifications for children (birth to 21 years of age) to receive this service include:

• Eligible medical diagnosis or identified eating concern  AND

• Resides in one of the selected areas (Zip codes detailed in link)

Easter Seals DuPage & Fox Valley Nutrition Therapy provides care that is difficult to find elsewhere in a community or medical setting. Training and specialties include assisting children with improved oral and digestive tolerance, modifications to help improve growth,  adjusting diet for improved variety, volume and complexity of foods and fluids, balancing the diet of those with food allergies or sensitivities, help with transitioning (off of or onto) a tube feeding, and homemade blenderized formula and diet modifications.

Evaluations are performed at the Center, in the family’s home or community setting. Our goal is to provide optimal nutrition care to children with developmental disabilities through an inter-disciplinary approach, addressing their nutrition risks and disorders and helping them to lead healthier lives.

Please refer parents, other specialists or anyone else with questions about the program to our Nutrition Therapy intake coordinator, Christy Stringini, who can be reached at 630-261-6126 and cstringini@EasterSealsDFVR.org.

Learn more about Easter Seals DuPage & Fox Valley nutritional therapy and feeding clinic at www.eastersealsdfvr.org.