Pain and Discomfort
Commentary
Under the Individuals with Education Act (IDEA) that governs special education in the United States, children with special needs are guaranteed to receive special education and services through the age of 21 (22 in some states). But what happens when a school decides a teen is ready to graduate with his class at the more typical age of 18?
For teenagers with minor disabilities or mild learning difficulties, it is perfectly acceptable--and even expected--for them to finish high school on time and receive a regular high school diploma. But for teens with more significant disabilities and challenges, they may not be ready to graduate at age 18.
This Month's Focus: Pain and Discomfort
Types of Pain in Children with Special Needs and Their Treatment
Pain and discomfort unfortunately occurs frequently in children with special needs. While pain disorders are often complex, they can be especially difficult and confounding in children with special needs. For example, the types of pain that a child with special needs experiences are often unusual and hard to treat, such as unrelenting neuropathic or visceral pain. Children who are non-verbal or cognitively impaired may have extreme difficulties indicating the source and severity of their pain. Additional medical complexity, such as respiratory issues or constipation, may make treating pain even more difficult.
Despite all of the confounding factors, pain and discomfort in children with special needs can be treated. The first step in determining appropriate treatment is to ascertain what type or types of pain your child may have. This article will discuss some of the most common types and sources of pain, including somatic, visceral, and neuropathic pain.
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Neuro-Crying, Neuro-Irritability, or Pain? A Personal Account
As an infant, my daughter cried a lot. That's putting it mildly. To be more honest, she screamed nonstop, day after day, for a full year. I'm not talking about a little bit of colic. I'm talking about screaming at the top of her lungs eight hours a day, every day. She only stopped to vomit or sleep.
Like many newborns who suffer profound brain injuries from hypoxic ischemic encephalopathy, my daughter was diagnosed with "neuro-crying" or "neuro-irritability." These terms can be defined as crying, agitation, or irritability in children with known neurological issues.
My husband and I, however, were convinced she was in pain.
As an infant, my daughter cried a lot. That's putting it mildly. To be more honest, she screamed nonstop, day after day, for a full year. I'm not talking about a little bit of colic. I'm talking about screaming at the top of her lungs eight hours a day, every day. She only stopped to vomit or sleep.
Like many newborns who suffer profound brain injuries from hypoxic ischemic encephalopathy, my daughter was diagnosed with "neuro-crying" or "neuro-irritability." These terms can be defined as crying, agitation, or irritability in children with known neurological issues.
My husband and I, however, were convinced she was in pain.
Autonomic Events and Crises: An Underdiagnosed Cause of Discomfort
Many children with neurological or metabolic conditions have
some degree of autonomic dysfunction, a topic that has been addressed in
previous articles. Certain other children have genetic
forms of dysautonomia, called Hereditary Sensory and Autonomic Neuropathies
(HSANs), that have similar symptoms.
All struggle with similar issues ranging from mild to life-threatening
symptoms, which may include everything from high blood pressure to low body
temperature and motility problems of the gut. Table 1 lists common symptoms
that develop in children with primary and secondary autonomic disorders.
Symptoms of dysautonomia, like those of many diseases, may be uncomfortable and painful for most children. But some of these children also experience autonomic events or crises, often on a daily basis, that can have a profound effect on their comfort and well-being. These may include nausea, vomiting, high blood pressure, fast heart rate, among other symptoms. The nature of these events and potential treatments for them is the subject of this article.
Read More -->Symptoms of dysautonomia, like those of many diseases, may be uncomfortable and painful for most children. But some of these children also experience autonomic events or crises, often on a daily basis, that can have a profound effect on their comfort and well-being. These may include nausea, vomiting, high blood pressure, fast heart rate, among other symptoms. The nature of these events and potential treatments for them is the subject of this article.
Specialty Article
Other Specialties
When No One Is Listening: Advocating Successfully with Your Child's Medical Team
by Deb Millard
Children with complex health care needs experience many different types of challenges throughout their lifetimes, including coping with multiple invasive medical procedures, handling follow-up appointments with a vast array of specialists, enduring frequent--and at times long--hospitalizations, managing pain, stress, and anxiety, as well as many other issues. Many of these children also struggle with expressive communication due to a variety of medical and developmental issues and don't have the resources to clearly communicate what they are thinking, feeling and going through.
As parents of a child with complex health care needs, you carry a tremendous amount of responsibility as you care for them and act as their advocates. What you don't often realize is that along with this responsibility also comes the right and empowerment to share your knowledge and be an incredibly valuable member of your child's medical team.
When No One Is Listening: Advocating Successfully with Your Child's Medical Team
by Deb Millard
Children with complex health care needs experience many different types of challenges throughout their lifetimes, including coping with multiple invasive medical procedures, handling follow-up appointments with a vast array of specialists, enduring frequent--and at times long--hospitalizations, managing pain, stress, and anxiety, as well as many other issues. Many of these children also struggle with expressive communication due to a variety of medical and developmental issues and don't have the resources to clearly communicate what they are thinking, feeling and going through.
As parents of a child with complex health care needs, you carry a tremendous amount of responsibility as you care for them and act as their advocates. What you don't often realize is that along with this responsibility also comes the right and empowerment to share your knowledge and be an incredibly valuable member of your child's medical team.
Feature
Taking Care of You, Part I: Treat Yourself to a Massage
by Shannon Gonsalves and Heather Chisolm-Owens, LMP and Doula
Feeling exhausted, stressed, sore, worried, and too busy to care for you? Barely making it through each day? Sound familiar?
Many parents of children with complex needs experience these feelings on a daily basis. Women especially will put their families' needs before their own. It is common, but dangerous to your health and marriage, and it sends a poor message to your children.
As parents, the best thing we can do for our families is to be happy, healthy and ready to face any new challenges that come our way. It sounds easy, but it is very difficult and takes strategic planning. It won't just happen on its own.
One simple way to combat stress is through massage. The majority of this article will address using massage to help reduce stress and take care of you. A second part of this series, on keeping yourself healthy physically and emotionally, will appear next month.