Feeding Issues
Commentaries
by Lauren
My name is Lauren, but you may know me as soxgirl24 online. I'm 22 years old and going into my third semester at Central Connecticut State University (CCSU) this fall. I'm a technical theatre major and a part time student. I'm active in my school's PRIDE club, Japanese-American Culture Club, and the Society of Paranormal Investigations. And as far as I know, I'm the only student at CCSU with a feeding tube.
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Our Tube-Weaning Roller Coaster
by Jinjue Serre
My son is 3 1/2 and has had some sort of feeding tube since he was three months old. We have tried continuous feeds (feeding him 24 hours a day), pump bolus (intermittent) feeds, gravity bolus feeds, and no feeds at all. It is such an up and down process that it gets incredibly frustrating. He has been off of his tube for a month at a time here and there, but always ends up losing weight and having to use it again. I am torn between being proud of him and sad. I'm proud because he can eat enough to be "off" the tube, but sad because it seems pointless to take him off since he always stops growing.
Read More -->by Jinjue Serre
My son is 3 1/2 and has had some sort of feeding tube since he was three months old. We have tried continuous feeds (feeding him 24 hours a day), pump bolus (intermittent) feeds, gravity bolus feeds, and no feeds at all. It is such an up and down process that it gets incredibly frustrating. He has been off of his tube for a month at a time here and there, but always ends up losing weight and having to use it again. I am torn between being proud of him and sad. I'm proud because he can eat enough to be "off" the tube, but sad because it seems pointless to take him off since he always stops growing.
This Month's Focus: Feeding Issues
Breastfeeding Your Tubefeeder
Before my daughter was born, I knew I wanted to breastfeed her. It was something that was very important to me, and something that I felt would give my daughter the best start in life.
But things did not turn out as expected, and my daughter was critically ill after birth, hooked up to a ventilator and many tubes and lines. Breastfeeding in the usual way was totally out of the question. Even after she recovered enough to begin receiving feeds, her suck was incredibly weak and her swallow uncoordinated. The likelihood of her breastfeeding or even bottle feeding was next to none.
Before my daughter was born, I knew I wanted to breastfeed her. It was something that was very important to me, and something that I felt would give my daughter the best start in life.
But things did not turn out as expected, and my daughter was critically ill after birth, hooked up to a ventilator and many tubes and lines. Breastfeeding in the usual way was totally out of the question. Even after she recovered enough to begin receiving feeds, her suck was incredibly weak and her swallow uncoordinated. The likelihood of her breastfeeding or even bottle feeding was next to none.
The Importance of Introducing Tastes
We often remark on how
important sight and sound are to young children. We expose them to
toys that are brightly colored, have blinking lights, play songs, or
make sounds. Thousands of articles have been written about the
importance of senses in development, and sight and sound, and to a
lesser degree touch, are always emphasized as the senses that provide
the most input.
But what about taste and smell? It is clear by watching a newborn baby sucking and mouthing everything in her environment that the mouth is a very important part of development, and one that provides the infant with a great deal of sensory feedback about her environment. Smell is less apparent, but there are hundreds of stories of just-born infants finding the breast to nurse, typically just by smell. Smell and taste are clearly important senses, and ones that are often under-recognized.
But what about taste and smell? It is clear by watching a newborn baby sucking and mouthing everything in her environment that the mouth is a very important part of development, and one that provides the infant with a great deal of sensory feedback about her environment. Smell is less apparent, but there are hundreds of stories of just-born infants finding the breast to nurse, typically just by smell. Smell and taste are clearly important senses, and ones that are often under-recognized.
Blended Diets: Why Not Real Food?
by Heather Meyer
As our family struggled with my son's constant ebb and flow of reflux, we tried formula after formula in his gastrostomy tube in a futile attempt to try to calm his gut down. Nothing seemed to make a difference, and his Prevacid dosage climbed higher and higher. It was incredibly frustrating to watch the chronic sinus and ear infections caused by silent reflux in addition to the sleepless nights and feeding aversions. As a mother, I had a nagging feeling that my son was intolerant to something in the formula. But what? Allergy testing showed nothing.
Read More -->As our family struggled with my son's constant ebb and flow of reflux, we tried formula after formula in his gastrostomy tube in a futile attempt to try to calm his gut down. Nothing seemed to make a difference, and his Prevacid dosage climbed higher and higher. It was incredibly frustrating to watch the chronic sinus and ear infections caused by silent reflux in addition to the sleepless nights and feeding aversions. As a mother, I had a nagging feeling that my son was intolerant to something in the formula. But what? Allergy testing showed nothing.
by Jennifer Peterson
During infancy, it became clear to us that our son Thomas was allergic to some foods, experienced reflux and had problems with maintaining a good appetite. Hindsight has allowed us to understand that he had these issues at birth. As I described in my article "Mito Plus: One Family's Experience with Mito, Autism, and Eosinophilic Disease," Thomas has multiple diagnoses of reflux disease, multiple severe food allergies, Eosinophilic Gastroenteritis, high-functioning Autism and Mitochondrial Disease. These various conditions manifested themselves as a poor suck reflex during nursing, poor sleep habits due to his reflux and irritation of the GI tract that impeded his appetite and ability to absorb nutrients.
All of these issues led his pediatrician to classify his overall nutritional condition as Failure to Thrive. The story below is how we transformed Thomas from "failure to thrive" to fully thriving.
Specialty Article
Other Specialties: Endocrinology
Early Signs of Puberty in Very Young Children with Cerebral Palsy and Similar Conditions
Occasionally I see a parent on a message board asking about early signs of puberty, such as pubic hair or body odor. I am always shocked by the numerous responses that say, "My child has this, too." While it is well known that children with cerebral palsy, encephalopathy, and similar conditions often enter puberty early, the few studies that have evaluated this subject don't seem to reflect the large number of families affected by this common condition.
It can be very alarming to see your one-year-old develop pubic hair or realize your four-year-old needs deodorant. It can be even more shocking when your six-year-old starts developing breasts. For some children, these changes may also make them self-conscious or uncomfortable with their bodies.
Early Signs of Puberty in Very Young Children with Cerebral Palsy and Similar Conditions
Occasionally I see a parent on a message board asking about early signs of puberty, such as pubic hair or body odor. I am always shocked by the numerous responses that say, "My child has this, too." While it is well known that children with cerebral palsy, encephalopathy, and similar conditions often enter puberty early, the few studies that have evaluated this subject don't seem to reflect the large number of families affected by this common condition.
It can be very alarming to see your one-year-old develop pubic hair or realize your four-year-old needs deodorant. It can be even more shocking when your six-year-old starts developing breasts. For some children, these changes may also make them self-conscious or uncomfortable with their bodies.
Feature
Guide to Holiday Shopping for Your Child with Special Needs
Two years ago I wrote my first shopping guide for children with special needs. I was hoping that by 2008 adapted toys would be mass produced and become a bit more mainstream. I keep hoping that I will see a doll in a wheelchair at every Toys "R" Us, and that I will be able to get switch toys at the local toy store. We have enough to do as parents of children with special needs, and having to order products off the internet months in advance because local stores do not carry appropriate toys just adds to our burden.
Adapted toys have not hit the local stores yet, so I am back to writing another holiday shopping guide. In reality, prices on adapted toy have actually gone up dramatically, especially when it comes to several of the main merchants. To deal with even higher prices, along with our poor economy, this year I am not only providing general suggestions, but also focusing on some alternative and less expensive sources for special needs products.