Diagnosis
Commentary
All of us want to feel like we belong. For many of us, the groups we belong to are based on things we choose, such as political views, hobbies, shared passions, or religious beliefs. But we also belong to groups based on what is inherent in our being, such as our ethnicity, race, age, or gender. Being a member of a group, whether it is librarians for peace, Toastmasters, or urban Latinas, helps us to develop our identities. Belonging gives us confidence. It gives us purpose. It defines who we are.
So what group do our children with disabilities fit into?
This Month's Focus: Diagnosis
When
I learned that Complex Child was soliciting articles that would share
the experience of being undiagnosed, I really struggled with myself.
"Undiagnosed" is a concept our family has lived with for quite some
time. We have a true love/hate relationship with it and it has often
divided my husband and me. Did I really want to spend time looking
this issue squarely in the eye? In the end my answer was yes. Lacking
a diagnosis requires stamina and strength; it also requires a
willingness to dig deep for answers. In that spirit I couldn't resist
the opportunity to explore "undiagnosed" as I never have before.
Cystic Fibrosis? When Doctors Disagree on the Diagnosis
by Kim Gately
Hope, worry, frustration, and letdown. It's the cycle we face in our home every time Christopher sees another specialist or has an appointment with a doctor. For the past 12 years, it's been a vicious cycle for us, over and over and over again. We get so very close to a diagnosis, so close you can feel the relief wash over you and taste the thrill of finally being able to give what he has a name. Then fear and hopelessness set in as you realize you bubble has just burst and you're no closer to answers.Juvenile Polymyositis: Moving Past the Diagnosis
by Marlowe Futrell
Our Matthew is a happy, laid back, exuberant, smart little six-year-old. He loves to be outside--swinging, going down the slide, chasing bubbles, throwing balls. One of his favorite things is the tunnels at McDonald's, Chuck E. Cheese, and the zoo. He loves sweets, cookies, cakes, ice cream, and popsicles. He plays his Gameboy and races Hot Wheels. He loves to go places--zoos, museums, just about any store, but especially amusement parks. He adores his two big brothers.
In other words, he's a normal kid.
NEHI: A Rare Diagnosis after Misdiagnosis
by Sarah Ince
Two Pediatric Pulmonologists were at a Conference for Children's Interstitial Lung Disease in 2006. There they learned about a little known form of this disease called NEHI. Only recently had doctors developed the ability to positively diagnose NEHI by Lung Biopsy. These two Pulmonologists had never seen a patient with it. One Pulmonologist lived in Utah and one lived in Missouri. They--and this conference--would eventually be the key to our son's diagnosis.
Specialty Articles
Neurology
Non-Surgical Treatments for Spasticity in Cerebral Palsy and Similar Conditions
Children with cerebral palsy and other conditions that affect muscle tone often present with high tone or hypertonicity in their bodies, especially in their arms and legs. Often called spasticity, this high tone can be very painful, leading to constant muscle spasms or clonus, and can eventually cause contractures or fixed, deformed joints and shortened tendons. Spasticity also limits movement, and can make walking, talking, or even just moving difficult or impossible for some children.
Spasticity is usually caused by the brain sending improper signals to the muscles, causing them to contract or tighten continuously. It is not a problem with the muscles directly, but rather an issue with the central nervous system's control of muscles. Symptoms of spasticity include high muscle tone and resultant stiffness, clonus (fast muscle contractions), muscle spasms, pain, shortened tendons and deformed joints. While spasticity can affect any part of the body, in most children, the legs or legs and arms are involved. Hips, ankles, knees, wrists, and elbows, along with thumbs and fingers in some children, are most likely to be involved in cerebral palsy.
While spasticity affects the majority of children with cerebral palsy, as well as children with other neurological or neuromuscular conditions, it can be prevented and treated to some degree. This article will evaluate non-surgical preventative methods and treatments that are commonly used to address spasticity and its consequences.
Non-Surgical Treatments for Spasticity in Cerebral Palsy and Similar Conditions
Children with cerebral palsy and other conditions that affect muscle tone often present with high tone or hypertonicity in their bodies, especially in their arms and legs. Often called spasticity, this high tone can be very painful, leading to constant muscle spasms or clonus, and can eventually cause contractures or fixed, deformed joints and shortened tendons. Spasticity also limits movement, and can make walking, talking, or even just moving difficult or impossible for some children.
Spasticity is usually caused by the brain sending improper signals to the muscles, causing them to contract or tighten continuously. It is not a problem with the muscles directly, but rather an issue with the central nervous system's control of muscles. Symptoms of spasticity include high muscle tone and resultant stiffness, clonus (fast muscle contractions), muscle spasms, pain, shortened tendons and deformed joints. While spasticity can affect any part of the body, in most children, the legs or legs and arms are involved. Hips, ankles, knees, wrists, and elbows, along with thumbs and fingers in some children, are most likely to be involved in cerebral palsy.
While spasticity affects the majority of children with cerebral palsy, as well as children with other neurological or neuromuscular conditions, it can be prevented and treated to some degree. This article will evaluate non-surgical preventative methods and treatments that are commonly used to address spasticity and its consequences.
Special Political Section
Obama and McCain on Disability
The intent of this article is to provide an unbiased look at the major presidential candidates, Barack Obama and John McCain, and their respective positions and record on disability issues.
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Obama and McCain on Healthcare
The intent of this article is to provide an unbiased look at the major presidential candidates, Barack Obama and John McCain, and their respective positions and record on healthcare.
Read More -->The intent of this article is to provide an unbiased look at the major presidential candidates, Barack Obama and John McCain, and their respective positions and record on healthcare.
Obama and McCain on Special Education
The intent of this article is to provide an unbiased look at the major presidential candidates, Barack Obama and John McCain, and their respective positions and record on special education and education for children with disabilities.
Read More -->The intent of this article is to provide an unbiased look at the major presidential candidates, Barack Obama and John McCain, and their respective positions and record on special education and education for children with disabilities.