Hunger

I picked up a book today that I find absolutely interesting. The book is Hunger: An Unnatural History by Sharman Apt Russell. I think this quote will speak for the whole of this post:

"Appetite can intertwine with hunger and then separate. You have an appetite for ice cream although you are not really hungry. You may be hungry for food without the appetite for anything specific. Appetite is desire, born of biology, molded by experience and culture.... When appetite and satiety conflict, appetite often wins. We know this whenever we leave the table after that stomach-distending holiday meal. We recognize it in most banana splits. We see it in patients being fed nutrients through a tube; their hunger is abated but their appetite remains, and they will secretly eat solid food even at the risk of pain or vomiting.

Appetite's alter ego is aversion. When aversion and hunger conflict, aversion often wins. We won't eat a breakfast that doesn't appeal to us. We lose weight traveling in a country with unfamiliar food. We pass up the appetizer that has a strange texture or smell...

Like many emotions, aversion can go straight to the stomach. If you once suffered food poisoning after a tuna sandwich, you may reject tuna for a long time. You may feel sick eating something you define as disgusting or morally wrong....Cannibalism is not a common response to hunger or famine. The majority of us will die before we eat human flesh. People with anorexia nervosa are paying more attention to their emotional needs than their body's hunger. Although they may feel hunger acutely, their appetite, their aversion is more important....

To be hungry is to be uncomfortable, and most of us experience hunger in the same ways we experience pain, as a signal to do something" (pgs 24-26).

Now here's the point to ponder: what happens for those that don't feel hunger the same way? What happens for those that don't connect the gnawing pain in the stomach with eating? What happens with those that have no feeling of hunger at all? What of those who cannot understand satiety signals from the body? Do we take into account the child or adult with an eosinophilic disorder that has tasted food, that has an appetite for pizza and ice cream yet those foods can no longer pass their lips? What of the psychological impact?

NASPHGAN 2008

Here is the very talented Cheri Fraker, Mark Fishbein, MD, and Laura Walbert at NASPHGAN talking about their new article:

The Prevalence of Dysphagia in Infantile GERD
Mark Fishbein, MD, Christina Branham, MD, Laura Walbert, CCC/SLP, CLC, Sibyl Cox, RD, LD, CLC, Jenny Mollerud, CCC/SLP, Cheri Fraker, CCC/SLP, CLC

Congrats on a job well done!

What is the child telling us?

Watch the video and think about what the child is telling us about drinking!

Treat with your eyes, heart, and mind

As you can see with the Anew logo, part of what we stand for is looking differently at the complex child. So often, parents, providers, physicians, teachers, and families get stuck on the one track mind. You have a diagnosis for a child and all the sudden that diagnosis begins to explain every facet of the child's life and behavior. Unfortunately, it is rarely that easy to explain anything in life and certainly one word, one diagnosis, cannot explain something so complex as the human child. One of my biggest pet peeves is when someone, anyone, says, "Well you know this child has ___". It is easy, too easy, to lay the blame of every aspect of what you cannot understand or control at the doorstep of the diagnosis. If you find yourself saying this about a child in your care, stop and evaluate the situation. Stop and question. As Cheri Fraker mentioned in the last conference, "Question everything, even what we tell you."

Questioning and digging into the issue is all about complex problem solving. We are all investigators, we are all anthropologists studying and learning from the children we treat and live with. One of my favorite quotes comes from Dr. Oliver Sacks, "So while a single glance may suffice for a clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do." This of course, applies to all children, not just the autistic child. Truly understanding the child in front of you may take time, may take many conversations with parents and caregivers, may require you to research and network with other professionals and parents, may push you in more ways than you were prepared for in school but you will never regret looking at the child in front of you with your eyes, heart, and mind.

Use your eyes to see what the child sees, get a second set of eyes (or a third and a fourth) by videotaping; use your heart to guide your decisions and be compassionate to the family and their needs; and use your mind to think, question, research, learn more, problem solve, keep an open mind, and know when to ask for help. As Dr. Mark Fishbein stated in our last conference, "Educating our families, our colleagues, and ourselves is the first step." Work as a team, no one person can solve all the problems. Be suspicious of gurus and experts, we all have something to learn--one person cannot know everything. One final word of advice, remember that the person who can teach you the most is the child sitting right in front of you.

I'll leave you with a quote from Kedesdy & Budd (1998): "Many of the issues that complicate research on pediatric feeding problems also make clinical work in the area challenging. The influence of multiple, interacting, etiological variables can produce unique, often puzzling, constellations of clinical features in different children, rendering feeding disorders both intellectually stimulating and humbling to clinicians. Clinical wisdom in this field depends on the continued pursuit of a scientist-practitioner approach, informed by the diverse perspectives of colleagues in multiple disciplines, the personal experience of parents, and mindful observation of the evolving intricacies of child behavior" (382).

The Good Doctor

While browsing through Blogger one day I came across a post labeled, "Good doctors leave good tracks" and I immediately thought of Dr. Mark Fishbein. Dr. Fishbein is a pediatric gastroenterologist at Children's Memorial Hospital, also sees patients at CMH at Central Dupage Hospital, and previously worked with the Feeding Team out of Springfield. He is also the co-author of Food Chaining and a new article "The Prevalence of Dysphagia in Infantile Gerd".

While reading the blog post about "Good doctors leave good tracks", I came across this, "you can always tell when a good doctor has been involved in a patient's case by the type of "trail" he or she left behind after the work was done - a ship's wake, if you will, that represents the effect the doctor had on the patient's life". To me, this is what medicine means on an elemental level. This is Dr. Fishbein. Where would Cheri's son with Cyclic Vomiting Syndrome be without Dr. Fishbein there to treat him, to start IV's when no one else could? Where would Ewan be without Dr. Fishbein and Cheri there to say I think we are looking at something more than just autism?

Good doctors leave good tracks. Dr. Fishbein has certainly left behind a wake of patients, including my own son Ewan, whose quality of life is better because of his compassionate care. He is a passionate advocate for quality of life issues and feeding aversions. His dedication to the field is readily apparent in a single conversation. Dr. Mark Fishbein can be reached at:

Mark Fishbein MD
Associate Professor of Pediatrics
Northwestern University's Feinberg School of Medicine
Division of Gastroenterology, Hepatology, and Nutrition
Attending Physician, Children's Memorial Hospital
1.800.KIDS DOC (1.800.543.7362)

Who is Anew Way?

Cheri Fraker, CCC/SLP, CLC and Laura Walbert, CCC/SLP, CLC are ASHA certified pediatric speech pathologist and certified lactation consultants. They provides therapy services at Koke Mill Medical Center-The Center for Neuromuscular Services and they are the clinic feeding specialists at The Center for Selective Eating and Pediatric Feeding Disorders, the multi-disciplinary feeding team clinic at Koke Mill Medical Center.

Cheri and Laura’s work in feeding is recognized internationally. They are graduates of Eastern Illinois University and together have over 30 years of experience. Cheri and Laura specialize in evaluation and treatment of infants and children with feeding disorders and dysphagia. Cheri developed the techniques of Pre-Chaining and Food Chaining© to treat children who are high risk for developing or who have been diagnosed with feeding disorders, problem and picky eating. She has presented on pediatric feeding disorders at The 2004 World Gastroenterology, Hepatology and Nutrition Conference, The National Gastroenterology, Hepatology and Nutrition Conference, the 58th and 59th American Academy of Cerebral Palsy and Developmental Medicine and The UCLA/UMH Nutrition Leadership Conference. Cheri and Laura have presented at the South Carolina and Illinois Speech Language and Hearing Association and together have presented numerous conferences for therapists throughout the US and Canada. Cheri and Laura co-authored articles in Nutrition in Clinical Practice and international medical periodicals, The Nest, Nutrition and the MD. Articles about Food Chaining have appeared in The Wall Street Journal, The Chicago Tribune and Fox News Live Morning Show in Chicago. Cheri and Laura are co-authors of the books Evaluation and Treatment of Pediatric Feeding Disorders: From NICU to Childhood and Food Chaining: The Sensible Six Step Solution to Solve Feeding Problems, Stop Picky Eating and Expand Your Child’s Diet.

Sibyl Cox is a pediatric dietitian and certified lactation consultant at Southern Illinois University School of Medicine. She has worked with children in critical care, neonatal and outpatient and has been part of a multi-disciplinary feeding team for 6 years. Ms. Cox has spoken nationally and internationally on the issue of feeding problems in children and collaborated with Cheri Fraker and Laura Walbert to develop the technique of Food Chaining to help children with feeding disorders. Sibyl is the co-author of the book Food Chaining: The Sensible Six Step Solution to Solve Feeding Problems, Stop Picky Eating and Expand Your Child’s Diet.

Stacey A. Vitale, M.S., CCC-SLP is a graduate from Indiana State University where she received both her undergraduate and graduate degree. She is currently the lead therapist at Sarah Bush Lincoln Health Systems in Mattoon, IL. She has been treating the pediatric population for 7 years with a large focus on children with feeding difficulties (ages birth-school age). She has presented to students and faculty at Eastern Illinois University on pediatric swallowing and at the local autism support group on feeding strategies for children with autism. Stacey is an Early Intervention evaluator and provider, member of ISHA and ECISHA.

Alicia J. Hart, B.A, is a graduate of Eastern Illinois University and is currently a Master’s Candidate in Child Development and Family Services at Eastern Illinois University. Her thesis work revolves around quality of life issues for children with an eosinophilic disorder and caregiver stress. Alicia is currently the Family and Community Resource Coordinator at The Autism Program at CTF in Charleston, Illinois and webmaster of www.theautismlife.com. She is the coordinator of the East Central Illinois Autism Support Group and volunteers her time regularly to those families and children needing Augmentative and Alternative Communication help or feeding difficulties. She has presented to students and faculty at Eastern Illinois University on topics such as Autism Spectrum Disorders, Eosinophilic Disorders, NICU and the High Risk Newborn, Infants with Disabilities, Financial Implications for Families Raising a Child with Autism, and Typical Toddler Development. She has presented programs to the community on Neurobiological Advances in Autism Research, The Child with Autism in the Medical Environment, Co-Morbidity and the Child with Autism, and Bridging the Gap: Therapy at Home and in the Clinic. She is also a faculty member of the Illinois Chapter of American Academy of Pediatrics. Alicia also does trainings regarding Early Intervention and Autism, Early Warning Signs of Autism, Emergency Responders and Autism, Child Care Providers and Autism, New Diagnosis Orientations for families, as well as working with young children in Social Skills groups. Alicia is a member of the American Partnership for Eosinophilic Disorders, Kids with Food Allergies, and the Child Life Council.

First Conference!

The past two days, Anew Way held its very first conference at Sarah Bush Lincoln Health Center in Mattoon, Illinois. We had a wonderful time tackling difficult issues and problem solving through tough therapy roadblocks! Day 1 was a lot about infants, aspiration, and treatment. Day 2 went into the child with feeding aversions, eosinophilic esophagitis, autism, and more. We hope this is the first of many exciting projects!