Disorders that Mimic Reflux
Commentaries
by Jennifer Peterson
How do you cut a cook off at her knees in one easy step? Declare that a family member will react to any contact with food! Nothing gets someone's attention like a loved one breaking out in hives from touching simple toast crumbs or from a minuscule trace of egg on someone's washed hand. Excitement adds when you can't figure out what caused the reaction. It's amazing how often we have to resort to using the Scientific Method to test our theories of causation.
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From Fear to Freedom: One Very Special Service Dog
by Deborah Tiel Milard
I grabbed all of Connor's gear, chewy tube, headphones, baseball hat, squeeze ball and sunglasses, and took him out on the back deck. Such a completely perfect day! Sun shining...cloudless skies...crisp cool air... It was an absolutely perfect spring day with my beautiful son. How much better could it get?
Within seconds of arriving outside, and just as the sun began to warm my face, the perfect day was shattered by the sound of my son's screams. Connor was shrieking and trembling, because a truck drove by. One hand was tightly covering his ear, while the other frantically motioned me to go back inside. My heart sank as I quickly picked him up and carried him to the safety of his indoor refuge. As I was rocking and comforting him, I kept thinking, "Why had I thought it would be so different this time? Was it because the day had been so perfect? Like somehow if there were no clouds in the sky, nothing could go wrong? How could I put him in a situation that would terrify him like that?"
Read More -->by Deborah Tiel Milard
I grabbed all of Connor's gear, chewy tube, headphones, baseball hat, squeeze ball and sunglasses, and took him out on the back deck. Such a completely perfect day! Sun shining...cloudless skies...crisp cool air... It was an absolutely perfect spring day with my beautiful son. How much better could it get?
Within seconds of arriving outside, and just as the sun began to warm my face, the perfect day was shattered by the sound of my son's screams. Connor was shrieking and trembling, because a truck drove by. One hand was tightly covering his ear, while the other frantically motioned me to go back inside. My heart sank as I quickly picked him up and carried him to the safety of his indoor refuge. As I was rocking and comforting him, I kept thinking, "Why had I thought it would be so different this time? Was it because the day had been so perfect? Like somehow if there were no clouds in the sky, nothing could go wrong? How could I put him in a situation that would terrify him like that?"
This Month's Focus: Disorders that Mimic Reflux
Introduction to Disorders that Mimic Reflux: Gastrointestinal "Zebras"
Children with complex medical problems ranging from autism to cerebral palsy are often affected by significant gastrointestinal symptoms. It is not uncommon to see children in this population who reflux or vomit the contents of their stomachs or suffer from a variety of other gastrointestinal symptoms ranging from pain to bloating, diarrhea, and constipation.
Because reflux is exceptionally common, especially in babies and young children with immature digestive tracts or children with neurological problems, it is usually the first disorder that doctors think of when a child presents with spitting up, vomiting, pain, and irritability. A common expression used in medicine is that doctors are trained to think of horses instead of zebras when they hear hoofbeats. Most children with gastrointestinal symptoms will have reflux...they are horses in this metaphor. But what about the child who may just be a "zebra?"
Living with Eosinophilic Esophagitis
by Darshani Sukumaran
Last summer I found myself in Utah at a special conference. Surrounded by children and adults with feeding tubes attached to small whirring backpack pumps, I felt strangely at home. I never thought that I would feel at home amongst people with feeding tubes! Welcome to my new normal. This conference, sponsored by APFED (American Partnership for Eosinophlic Disorders), brought together people who suffer from a family of conditions called Eosinophilic Gastrointestinal Diseases. The most common manifestation is Eosinophilic Esophagitis, or EE. The journey to Utah was for me a type of homecoming. For the first time since I had my daughter Nitara I felt that I was in the company of people who knew exactly what we had gone through with her.
Motility Disorders that are Commonly Mistaken for Reflux
A surprisingly large number of children with motility disorders experience the same progression of events leading up to diagnosis. As a baby, he vomits several times a day and spit-up constantly. Some children are irritable, do not sleep, or have trouble passing stools. All are taken to the doctor and diagnosed with infant reflux, an incredibly common disorder that affects a large number of babies in their first year of life. Most children are put on Zantac, have their formulas changed, have minimal testing if any, and fail to improve. For parents, the remainder of that first year of life is spent caring for a screaming, vomiting baby, doing lots of laundry, and in general, being very frustrated.
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Cyclic Vomiting Syndrome: The Disease in Disguise
by Christine Lackey
Cyclic Vomiting Syndrome: a term I had never even heard until the fall of 2006. My then six-year-old son had preexisting GI issues since birth, but most of his problems started after he had a fundoplication done at age three for what we thought was severe reflux. We struggled for years after his surgery with weight issues, feeding issues, and motility problems, and still dealt with daily chronic vomiting. But fall 2006 brought about a new type of vomiting: cyclic vomiting.
This is our story of living with a child who has severe CVS. In the summer of 2006, my son Jake was admitted to Boston Children's Hospital for chronic pain during nighttime tube feeds. The very next day, Jake woke up vomiting. This was not typical for him, as he was usually a nighttime vomiter. He continued to vomit throughout the day. At first, everyone thought he must have picked up a GI virus, but he had no temperature or body aches. Before we knew it, a couple of days turned into a week and we were still in the hospital with Jake vomiting. We never ended up dealing with what we were there for to begin with: pain with nighttime feeds.
by Christine Lackey
Cyclic Vomiting Syndrome: a term I had never even heard until the fall of 2006. My then six-year-old son had preexisting GI issues since birth, but most of his problems started after he had a fundoplication done at age three for what we thought was severe reflux. We struggled for years after his surgery with weight issues, feeding issues, and motility problems, and still dealt with daily chronic vomiting. But fall 2006 brought about a new type of vomiting: cyclic vomiting.
This is our story of living with a child who has severe CVS. In the summer of 2006, my son Jake was admitted to Boston Children's Hospital for chronic pain during nighttime tube feeds. The very next day, Jake woke up vomiting. This was not typical for him, as he was usually a nighttime vomiter. He continued to vomit throughout the day. At first, everyone thought he must have picked up a GI virus, but he had no temperature or body aches. Before we knew it, a couple of days turned into a week and we were still in the hospital with Jake vomiting. We never ended up dealing with what we were there for to begin with: pain with nighttime feeds.
Specialty Articles
Other Specialties: Ophthalmology
Assessing Vision in Children who are Non-Verbal or have Multiple Disabilities
We knew early on that our daughter, who is diagnosed with hypoxic-ischemic encephalopathy, had problems with her vision. While she did track an object somewhat, she was very inconsistent and often unable to follow the object very far. She also clearly had limited distance vision. Despite her obvious deficits, we were confident that she had some vision since she spent hours reaching for herself when placed next to a mirror. Her vision therapist, who was provided by Early Intervention, agreed with our perceptions.
At around nine months of age, we took her to see an ophthalmologist who supposedly had experience evaluating children with neurological issues. We waited for four hours in the waiting room, and then were only seen by a resident. After a few lights were shined in her eyes and a tongue depressor moved in front of her face, she was pronounced to be completely blind by the resident. He claimed her eyes were unresponsive to light and she was unable to track. When the doctor finally saw us, she agreed with the resident's findings.
Features
Education
Early Intervention: Maximizing Your Baby's Development
by Varsha Daryanani
Early Intervention services are governed by the Individuals with Disabilities Education Act and are available for young children in every state across the country. The programs may differ from state to state, but the overall purpose of each program is the same: to assist children (usually birth to age three but up to age five in some states) who have or are at risk of developing a disability or other special need that may affect their development. There are many facets to Early Intervention programs but ultimately the goal is to remediate existing developmental problems and prevent new problems from occurring.
Advocacy and DisabilityEarly Intervention: Maximizing Your Baby's Development
by Varsha Daryanani
Early Intervention services are governed by the Individuals with Disabilities Education Act and are available for young children in every state across the country. The programs may differ from state to state, but the overall purpose of each program is the same: to assist children (usually birth to age three but up to age five in some states) who have or are at risk of developing a disability or other special need that may affect their development. There are many facets to Early Intervention programs but ultimately the goal is to remediate existing developmental problems and prevent new problems from occurring.
Achieving Independent Mobility Regardless of Disability
It is impossible to underestimate the power of moving from one location to another by yourself. Almost all children strive to have this kind of control over themselves and their environment. This is especially true for children who have physical disabilities that dramatically limit their ability to move. How can we get these kids moving independently, even if they can barely move an arm or a leg by themselves?
Becoming independently mobile is important for many reasons, including developing physical skills, asserting independence, separating from a parent or caregiver, exploring the environment, and learning to make choices. Children who are not able to move cannot make choices about what they want to do, where they want to go, or who they want to meet. They are not able to explore all the interesting things around them, including sidewalks, toys, trees, and everything else a child finds intriguing. Some children become frustrated and develop "learned helplessness" as a result of their mobility impairments. For these children, getting them moving can not only lift their spirits, but it can also help motivate them to break out of their shells and learn about the world around them.