For Kids : What’s Dystonia ?

We’ve decided to create this special webpage for parents and Kids in Motion. You’ll find plenty of information about the nervous system as well as brain teasers, mazes and other activities. If you’d like to share your own story, poem, or artwork about dystonia or another movement disorder, please contact us and we’ll happily post your work on this webpage.

Websites about the Brain

Publications Just for Kids

Did You Know? Miles and Miles of Neurons

There are one hundred billion neurons in the brain. A stack of one hundred billion pieces of paper would be about 5000 miles high, the distance from San Francisco to London.

Music and Kids With Dystonia

Room for Breanna, MySpace.com Breanna’s Wish - To Cure Dystonia Breanna Rose Foundation Nancy Vogl’s Music, MySpace.com

No Pain in Brain

There is no sense of pain within the brain itself. This fact allows neurosurgeons to probe areas of the brain while the patient is awake. Feedback from the patient during these probes is useful for identifying important regions, such as those for speech, so they can be spared during procedures if possible. Source: BrainConnection.com

Lots of Oxygen for a Small Organ

The average adult human brain weighs three pounds and uses 20% of the body’s oxygen. These are just a couple of the many facts we know about the human brain. Source: BrainConnection.com

Can Botox Help Dystonia Patients?

Botox and MyoBloc can help reduce the symptoms of dystonia. How does Botox work? Read the above story: Me and Dr. Move!

Glossary

Neuron: The cellular unit of the central and peripheral nervous systems.

Neurotoxin: Any chemical that poisons neurons.

Neurotransmitter: A chemical released by neurons to relay information to other cells.

Ablation: The removal or destruction of tissue.

Basal Ganglia: A series of subcortical structures in the center of the brain that are principally responsible for motor tasks.

Benzodiazepines: Drugs such as valium and klonopin, most frequently prescribed for dystonia.

Dyskinesia: A condition characterized by abnormal involuntary movements.

Dystonia: Sustained muscle contractions causing abnormal motor control. For example, co-contraction of flexors and extensors (opposing muscle groups) resulting in the lack of motor control of a limb. Often begins in the foot or limb in early childhood, progressing to a generalized form as years pass.

For more info on dystonia visit…

“8-18″ Children’s Program Courage Award Program Junior Advisory Council All of the above programs are offered via the Dystonia Medical research Foundation. Wanna Cure? Get Involved!

Message Boards

The purpose of www.drdcentral.com is to provide a central resource of information about Dopa-Responsive Dystonia (DRD). We also urge you to access www.tylershope.org where you can also meet parents and Kids in Motion! Most of what you’ll find here are links to other sites. If you discover new links or any relevant information, please email us at infoc4d@aol.com. To find out more about DRDCentral.com click here.

Trouble explaining Illness to your child?

Mazes & other Fun Stuff to do:

Brainteaser Quizzes Optical Illusions Bonus.com Brain games, multiplayer, mazes, puzzles, arcade games, and other online activities.

Etch-A-Sketch Online It’s a toy. It’s a drawing tool. Now it is an online game too!

Online Word Search

a d y s t o n I a k l x y p g a d e g I n g n I p o c x w t k I l h j e l e k n s e n e g j o p d e c s t u f r I a m s t r o n g h d r t m I e s t a I m a t t e r w s c v b k l o

Brothers and Sisters

Parents are not the only ones who must adjust to a child’s illness. Life changes for the entire family.

Parents have to pay extra attention to an ill child, and brothers and sisters often feel neglected. They might also have difficulty learning to live with the stresses of having a sibling with a chronic health problem.

How siblings might feel

Some children experience guilt that they are not sick (”Why him and not me?”). As part of the magical thinking of young childhood, they may wonder whether an evil thought they have had about a sibling might have caused his illness. They may feel anxious about becoming sick themselves, or they may sometimes wish they were sick, too, so they could become the center of the family’s attention. They might feel angry if they are asked to assume more household chores than their ill sibling, or guilty when they resent the additional responsibility. They may become embarrassed when strangers stare at their brother or sister in a wheelchair, or when other children tease their sibling because he or she looks different.

What you can do

Be aware that while attending to the needs of your child with a chronic illness, you may be neglecting - or creating unfair expectations for - your healthy children. Too often, siblings become invisible unless they demand attention. On the other hand, siblings can participate in the family and feel pride and love in helping their brother or sister with his or her health problem. The presence of a family member with a chronic illness provides opportunities for increased empathy, responsibility, adaptability, problem-solving and creativity.

Try to establish some balance between the needs of your ill child and those of your other children. Spending time with each child individually may help. Develop a special relationship with each one of your youngsters. Also keep in mind that siblings need to have honest information about the illness and to have their questions listened to and answered.

Warning signs that your other children are having trouble

When there is a child with a chronic illness in your family, your other youngsters may experience negative repercussions. Here are some warning signs indicating that the siblings of your ill child may need some extra attention.

Is a sibling:

  • anxious?
  • depressed?
  • withdrawn?
  • angry?
  • losing interest in friends?
  • doing poorly in school?
  • pushing herself too hard to achieve?
  • rebellious?
  • losing interest in activities that once brought pleasure, such as sports or music lessons?
  • blaming themselves for their sibling’s illness?
  • acting in ways designed to draw attention?

Developing resilience

No one would choose to have a child with a chronic illness. However, living with a chronic illness can teach adults and children a lot about themselves and those around them. Adults and children can learn about their strengths and limitations, and they can learn new ways to solve problems and to be resilient. These are lessons that can serve them well for the rest of their lives.

In the months and years ahead, continue to reassess your goals for your child and your family. Be willing to make changes that serve both the youngster with the chronic health problem and everyone else in the family. As much as possible, involve your child in these decisions, particularly when they affect him. Stay informed and give yourself credit for all the hard work you have done.

No family knows from the outset how it will adapt to the reality of a child with a chronic health problem. There is no right way or wrong way to adjust; rather, every family should strive for its own balance. Many factors will influence this process, including the course of the disease and the resources available to the family. While all families with chronic health problems struggle through times of fear and despair, many also develop a resilience, a creativity, and a closeness they did not always have.

Published online: 6/07 AAP

Source: Caring for Your School-Age Child: Ages 5 to 12 (Copyright © 2003 American Academy of Pediatrics)
To order a copy of this book visit the AAP Bookstore.

Copyright. c4d.2007-9.