Our Premiere Issue!
Commentary
Like many parents of children with special needs, I have spent many evenings after the kids are in bed researching treatments, tests, disorders, and therapies that could possibly benefit my daughter. And like many parents, I have accumulated a ton of knowledge about all aspects of her specific medical condition.
So many parents have this sort of knowledge locked inside their heads. What if it could all be shared in an easy-to-understand format with parents of other children? I have already seen how this knowledge can benefit others through my work as a host and moderator at Parent-2-Parent.com. It was my dream to take my skills in research and writing, honed after several years as an academic at a research university, and try to archive this knowledge through in-depth articles on subjects related to children with complex medical issues.
This Month's Focus: Fundoplication and Retching
Fundoplication in Children with Neurological Impairments
Almost all parents of children with neurological impairments and reflux will be faced with making a very crucial decision at some point: whether or not their child should have a fundoplication or anti-reflux surgery. It is an exceptionally difficult decision to make, one that could have profound consequences for the remainder of the child's life.
How do you as a parent make such a difficult decision?
10 Questions Every Parent Needs to Ask before Fundoplication Surgery
The following questions are intended to help parents and doctors determine how risky a fundoplication surgery would be for a specific child. Each question discusses a condition or state that may make a fundoplication more likely to have complications.
1. Does my child have a motility problem?
Many children with reflux also have concurrent motility problems, such as delayed gastric emptying, dysmotility, or an esophageal motility problem. If your child has a diagnosed motility problem, fundoplication surgery will not change the motility problem and usually, in fact, makes it worse. A study by top motility specialists demonstrated that almost all children with functional GI symptoms had abnormal motility after antroduodenal manometry testing, and that the group of children who had had a fundoplication surgery to relieve their symptoms continued to have the same symptoms after surgery.1 In many cases, symptoms of a motility problem are mistaken for reflux when in fact the motility problem is the underlying cause of most symptoms.
Solutions for Retching
Retching, also commonly known as the dry heaves, is a very frequent complaint in children who have had a fundoplication surgery or who have certain neurological or gastrointestinal conditions. Children whose nervous systems are overly sensitive, as well as children with motility problems, often retch even without fundoplication surgery.
Retching can be extraordinarily debilitating for children. Some may spend hours a day retching, or have dozens of retching episodes over the course of the day. Sometimes it becomes so serious that sedation is required. What many doctors do not know is that retching often can be treated effectively if a doctor has the appropriate diagnostic tests and knowledge.
Specialty Articles
Urology and Nephrology
Another Treatment for Chronic UTIs: Gentamicin Bladder Instillations
Many children with neurological or neuromuscular disorders have chronic urinary tract infections (UTIs). The causes for these infections are multiple, and may include a neurogenic bladder, urinary retention, incontinence, diaper use, catheter use, kidney reflux, or anatomical anomalies.
In most children, UTIs develop when bacteria, usually from the gut and stool, overgrows in the bladder. A majority of infections come from the bacteria E. coli, but other bacteria from the gut, as well as several other types of bacteria, may also create infections. Some infections are mild, with foul-smelling urine and pain the primary symptoms. Others can lead to fevers and more systemic infection, especially if the infection reaches the kidneys. Many young children also experience vomiting and GI upset with UTIs. In children who are symptomatic, antibiotics are usually prescribed to treat the infection.
Respiratory
Noisy Breathing: Stridor in Children with Low Trunk Tone
A surprising number of children with cerebral palsy or other conditions affecting muscle tone have very noisy breathing when they inhale, commonly called stridor. While this fact has been noted anecdotally by both doctors and parents, surprisingly little research has been done on the subject. No medical articles have ever been published that focus exclusively on stridor in children with hypotonia (low trunk tone) or cerebral palsy.
Features
Insurance and Medicaid
Writing Winning Insurance Appeal Letters
Like many parents of children with complex medical issues, we receive many insurance denials. I would say we probably average about three a week, although many of these are simple to solve.
Over the years, I have come up with a variety of ways to win even the most difficult insurance denials. What I typically do is write a letter from me (the parent) describing in detail why the appeal should be granted. Surprisingly, much of the time just this one letter will win the appeal. If it does not or the insurance company requests a physician's letter, I typically have the physician mail or fax me the letter and submit my own letter supplementing the physician's statement.
Here are some of the strategies I use when writing my letters, followed by a sample letter. Good luck!
Advocacy and Disability
Presidential Candidate Fact Sheets
The information provided here has been taken off of the candidates' websites. Information is accurate as of 1/15/08. As the candidate websites are changing daily, additional information may become available at a later date.
This fact sheet will be removed on or around 9/1/08 once candidates for both parties have been chosen.