Respiratory Equipment
Commentary
by Angela Sittler
All parents, upon discovering they are expecting, dream of having the perfect child. They want the standard ten fingers and ten toes healthy baby. They want the baby who crawls by six months and walks by one year...who says mama and dada when they walk in the room. The child who is the top of her kindergarten class and beyond. But what happens when the baby they get is not the "norm?" A baby who is not healthy, who has eleven fingers, who doesn't crawl until two years old, who hasn't taken that first step yet, and who doesn't say mama and dada. The child who is in special education, struggling to learn what his peers learned when they were two and three years old. What do these parents do? They either sink or swim. I chose to swim.
This Month's Focus: Respiratory Equipment
Surviving Oxygen Therapy
by Courey
If someone had told me a year ago that my son would be on oxygen full time, I wouldn't have thought I could handle it. There is definitely an adjustment period, but like all adjustments, it's temporary. Eventually you figure out what works for you and how to make life run as smooth as it did before.
When the doctor tells you that you child needs to be on full-time oxygen, it is rather overwhelming. They set up the basics for you and have them delivered to your house. Suddenly your house is full of tubing, tanks, and a somewhat noisy concentrator that is a constant reminder that your kid is not "normal."
When the respiratory therapist leaves after explaining it all to you, your brain feels so full that you sit there thinking, "I have no clue what I'm doing. How do I know that I'm doing it right?" There will be mistakes, but you are human and it's okay. You just need to learn to be forgiving of yourself. Eventually you WILL figure it all out. Just give yourself some time.
Treating Obstructive Sleep Apnea in Children with CPAP or BiPAP
by Erin
During infancy, my almost four-year-old with severe cerebral palsy started jerking her legs and crying while falling asleep. She seemingly slept soundly once asleep, so she was placed on several anti-seizure medicines to stop these seizure-like movements. When she continued to have difficulties on anti-seizure medicines, she was referred to a Sleep Clinic and at fourteen months old was diagnosed with Sleep Apnea based on her physical exam and history. Shortly thereafter she was found to have Obstructive Sleep Apnea (OSA) after a Nocturnal Sleep Study.
Caeley's Voice: Passy-Muir Valves for Kids with Trachs
by Mary S.
When my daughter Caeley had her tracheostomy placed at 18 months old, my husband and I were concerned with whether she would be able to vocalize after the surgery. She was able to vocalize with her ventilator, but as we began weaning her off of the vent, we weren't able to hear her speak anymore. I asked her pulmonologist about options for a speaker valve, and we set up an appointment with a speech language pathologist for an evaluation.
Specialty Articles
Urology and Nephrology
A Victory for Children Who Cath
In the past, children who require intermittent catheterization had to reuse their catheters over and over, sometimes as many as 50 times, since Medicaid and Medicare paid for only one catheter per week. In a long-awaited policy revision, Medicare finally approved the use of 200 catheters and packages of lubricant per month beginning April 1, 2008. This rule is strictly a Medicare coverage decision; however, Medicaid and private insurance companies typically follow the lead of Medicare when creating coverage guidelines. This policy will likely apply to most children in the United States within the near future.
GI and Nutrition
Formulas Part II: Specialized Formulas
This article is the second part of a two-part series discussing formula options for children with special healthcare needs. Part I appeared in June and talked about commonly-used formulas.
Certain children with very specialized or rare conditions need equally special formulas to satisfy their nutritional needs. Fortunately, multiple products and even modular products that allow your doctor to create a unique formula are now available for infants and children. This article will summarize the available options for premature babies, children on a ketogenic or low-carbohydrate formula, children requiring a low-fat formula, children with various inborn errors of metabolism, and children with severe allergies or eosinophilic disorders. In addition, a brief list of specialized adult formulas (diabetic, renal, pulmonary, critical care, and miscellaneous others) is included since these may be appropriate for some older children.
A Victory for Children Who Cath
In the past, children who require intermittent catheterization had to reuse their catheters over and over, sometimes as many as 50 times, since Medicaid and Medicare paid for only one catheter per week. In a long-awaited policy revision, Medicare finally approved the use of 200 catheters and packages of lubricant per month beginning April 1, 2008. This rule is strictly a Medicare coverage decision; however, Medicaid and private insurance companies typically follow the lead of Medicare when creating coverage guidelines. This policy will likely apply to most children in the United States within the near future.
GI and Nutrition
Formulas Part II: Specialized Formulas
This article is the second part of a two-part series discussing formula options for children with special healthcare needs. Part I appeared in June and talked about commonly-used formulas.
Certain children with very specialized or rare conditions need equally special formulas to satisfy their nutritional needs. Fortunately, multiple products and even modular products that allow your doctor to create a unique formula are now available for infants and children. This article will summarize the available options for premature babies, children on a ketogenic or low-carbohydrate formula, children requiring a low-fat formula, children with various inborn errors of metabolism, and children with severe allergies or eosinophilic disorders. In addition, a brief list of specialized adult formulas (diabetic, renal, pulmonary, critical care, and miscellaneous others) is included since these may be appropriate for some older children.
Feature
Education
Introducing Switches and Augmentative Communication Devices to Very Young Children
Young children with significant physical impairments may require the use of specialized devices in order to communicate. While it is extremely important for all young children to communicate, in some ways it is even more important for children with medical issues to be able to indicate their wants and needs. For these children, early augmentative communication may help them either to develop speech or to transition to a sophisticated communication device as they get older.
Children who cannot communicate often get very frustrated. In some cases, they also begin to feel helpless. Frustration and helplessness may lead to negative behaviors such as acting out, self-injury, or shutting down. In addition, children who cannot communicate may have trouble socializing, acquiring knowledge, or progressing with development.