Juvenile-HD

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INDEX Page
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10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
Sleep Disorders

INDEX Page

Side note:  there was a story on 48 Hours in February 2002 that showed studies proving  that a large number of children with apena, that caused excessive snoring at night, were misdiagnosed as being hyperactive or AD/HD.  Once their apena was treated with minor surgery, their behavoir became normal.  It was amazing!
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It's the middle of the night and everyone in your house is fast asleep. Suddenly, you are jolted out of bed when you hear your child scream. It's probably another nightmare, you think, as you head into his room to console him.

A nightmare is one type of parasomnia. Parasomnia, which means "around sleep," also includes sleepwalking, night terrors, bedwetting, and narcolepsy. All can create havoc in your home, and some can be harmful to your child. Keep reading to learn about the three categories of parasomnia (rhythmic, paroxysmal, and static disorders) and to find out how you can help your child.

Rhythmic Disorders
Rhythmic disorders, such as head-banging, head-rocking, and body-rocking, involve movements that range from mild to seizure-like thrashing. Other rhythmic disorders include shuttling (rocking back and forth on hands and knees) and folding (raising the torso and knees simultaneously).

During the rhythmic movements, the child may moan or hum. These movements seem to occur during the transition between wakefulness and sleep or from one stage of sleep to another.

There is no known cause for this type of disorder, but medical or psychological problems are rarely associated with it. Children who experience rhythmic disorders may have morning headaches, nasal problems, and ear infections.

Another rhythmic disorder is restless legs syndrome (RLS), a sensory and motor abnormality that seems to have a genetic basis. In RLS, the child's legs move repeatedly. Many people who have RLS also have periodic leg movement syndrome (PLMS) - this occurs during sleep when the legs move involuntarily.

Treatment for RLS can include:

  • music therapy (rhythmic sounds, such as the ticking of a metronome, may help induce and regulate sleep)
  • psychotherapy
  • hypnotism
  • motion-sickness medications
  • tranquilizers
  • stimulants

Paroxysmal Disorders
Paroxysmal disorders are those that come on or recur suddenly. They include night terrors, nightmares, sleepwalking, and bedwetting.

Night Terrors
Night terrors (also known as Pavor Nocturnus) are characterized by a sudden arousal from sleep with a piercing scream or cry. During the episode, heart and breathing rates may increase and the child's eyes may be open, but he probably won't remember what happened - other than waking up and feeling scared.

Night terrors occur in the first third of the sleep cycle, when the child is in deep sleep. Instead of waking or moving into another stage of sleep, the child gets "stuck" between stages. This can occur in as many as 15% of young children and can be caused by being overly tired or having an interrupted sleep cycle.

By themselves, night terrors are not dangerous, but what happens during one can be. A child may jump out of bed and do something that he might not otherwise do.

There is no known cause of night terrors, but some doctors believe that it has to do with physical causes. Apnea may be present.

Following evaluation to eliminate any possible physical causes (such as neurological conditions), medication may be used as treatment.

Nightmares
Nightmares differ from night terrors in that they are usually psychologically based, are more often remembered, and aren't usually dangerous.

Nightmares also occur only during REM (rapid eye movement) sleep. During REM sleep, the sleeping person's eyes move quickly, heart rate and breathing may be erratic, and dreams (or nightmares) may occur. Non-REM sleep (also called slow wave sleep) is deeper.

Sleepwalking
Sleepwalking, which is usually mild, can be hazardous when it's frequent or intense.

Because the child is not awake during an episode, dangerous objects should be removed from the room where he sleeps and the windows should be locked.

Following a medical evaluation, these treatments may help reduce or eliminate sleepwalking:

  • medication
  • consistent sleep-wake cycle

Bedwetting
Bedwetting, also called enuresis, is a common problem that can affect a child's self-esteem as well as his sleep. Because it occurs at night and can affect sleep, bedwetting is classified as a parasomnia.

It typically occurs in children who are between the ages of 3 and 8. Bedwetting usually stops on its own, but it sometimes continues into adolescence. A child who regularly wets the bed should see a doctor to rule out any physical cause.

Static Disorders
Static disorders, which are not disruptive, include sleeping with open eyes (this can be common in infants and young children) or in odd positions (such as upside down or arched).

Even though static disorders are not harmful, children who sleep in odd positions or with their eyes open should be examined by a doctor, especially if the behaviors persist or they are accompanied by other unusual symptoms.

Helping Your Child
If you're worried about your child's sleeping patterns, talk with your child's doctor. He or she may refer you to a sleep specialist or encourage you to establish good sleep hygiene for your child, which would include:

  • following a fixed bedtime and wake-up time (and nap times)
  • keeping consistent play and meal times
  • avoiding stimulants, such as caffeine, near bedtime
  • making the bedroom quiet, cozy, and conducive to sleeping
  • using the bed only for sleeping - not for homework, playing, or watching TV
  • limiting food and drink before bedtime if gastroesophageal reflux (GER) or bedwetting is a problem

It may also help to keep a pre-sleep diary for your child. In the diary, record what your child does before he goes to bed, when he goes to the bathroom, and what he eats and drinks. Other information you can include, such as the weather conditions, may help your child's doctor create a successful treatment program.

Updated and reviewed by: Kim Rutherford, MD
Date reviewed: September 2001
Originally reviewed by:
Aaron Chidekel, MD

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Apnea and Your Child

Everyone has brief pauses in their breathing pattern called apnea - even your child. Usually these brief stops in breathing are completely normal. Sometimes, though, apnea or other sleep-related problems can be a cause for concern. Read on to find out what it means when your child's doctor mentions apnea.

Types of Apnea
The word apnea comes from the Greek word meaning "without wind." Although it's perfectly normal for everyone to experience occasional pauses in their breathing, apnea can be a problem when breathing stops for 20 seconds or longer.

There are three types of apnea: obstructive, central, and mixed.

Obstructive Apnea
This type of apnea is caused by an obstruction of the airway (such as enlarged
tonsils and adenoids), and it is a common type of apnea in children. As many as 1% to 3% of otherwise healthy preschool-age children have obstructive apnea.

The most common symptom is snoring; others include labored breathing while sleeping, gasping for air, sleeping in unusual positions, and changes in color. Because obstructive sleep apnea may disturb sleep patterns, these children may also show continued sleepiness after awakening in the morning, and tiredness and attention problems throughout the day. Sometimes this can affect school performance. One recent study suggests that some children diagnosed with AD/HD actually have attention problems in school because of disrupted sleep patterns caused by obstructive sleep apnea.

Treatment for obstructive apnea involves keeping the throat open to aid air flow, such as with adenotonsillectomy (surgical removal of the tonsils and adenoids) or continuous positive airway pressure (CPAP). CPAP involves having the child wear a nose mask while sleeping.

Central Apnea
Central apnea results when the part of the brain that controls breathing doesn't start or maintain the breathing process properly. It's the least common form of apnea (except in very premature infants, in whom it is seen fairly commonly because the respiratory center in the brain is immature) and often has a neurological cause. A few short central apneas are normal, particularly following the deep breath that occurs with a sigh.

Mixed Apnea
Mixed apnea is a combination of central and obstructive apnea and is seen particularly in infants or young children who have abnormal control of breathing. Mixed apnea may occur when a child is awake or asleep.

Conditions Associated With Apnea
Apnea can be seen in connection with:

Apparent Life-Threatening Events (ALTEs)
An ALTE itself is not a sleep disorder - it's an event that is a combination of apnea, change in color (bluish lips or face), change in muscle tone, choking, or gagging. Most ALTEs can be scary to observe, but they usually are uncomplicated and do not recur.

Some ALTEs, though, especially in young infants, are associated with medical conditions (such as gastroesophageal reflux (GERD), infections, neurological disorders) that can cause apnea. These medical conditions require treatment, so all children who experience an ALTE should receive emergency treatment. Call 911 immediately if your child shows the features of an ALTE listed above.

Apnea of Prematurity (AOP)
This condition can occur in infants who are born
prematurely (before 34 weeks of pregnancy). Because the brain or respiratory system may be immature or underdeveloped, the baby may not be able to regulate his own breathing normally. AOP can be obstructive, central, or mixed.

Treatment for AOP can involve the following:

  • keeping the infant's head and neck straight (premature babies should always be placed on their backs or sides to sleep to help keep the airway clear)
  • drugs (such as aminophylline, caffeine, or doxapram) to stimulate the respiratory system
  • continuous positive airway pressure (CPAP) - to keep the airway open with the help of forced air through a nose mask
  • oxygen

Apnea of Infancy (AOI)
If the cause of apnea can't be found and it continues, this is called apnea of infancy. It occurs in children who are younger than 1 year old and who were born after a full-term pregnancy.

Infants can be observed at home with the help of a special monitor prescribed by a sleep specialist. This monitor records chest movements and heart rate and can relay the readings to a hospital apnea program or save them for future examination by a doctor.

The apnea usually goes away on its own, but if it doesn't cause any difficulties (such as low blood oxygen), it may be considered part of the child's normal breathing pattern.

What to Do if You Think Your Child Has Apnea
If you suspect that your child has apnea, call your child's doctor. If you suspect that your child is experiencing an ALTE, call 911 immediately.

Most cases of apnea can be treated or managed with surgery, medications, monitoring devices, or sleep centers. Many cases of apnea go away on their own.

Updated and reviewed by: Kim Rutherford, MD
Date reviewed: October 2001
Originally reviewed by:
Aaron Chidekel, MD

Source:  KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/ 
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The National Alliance for the Mentally Ill (NAMI) is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such  as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders.  URL: http://www.nami.org/illness/

Sleep disorders: There are several types of sleep disorders including insomnia, narcolepsy, and obstructive sleep apnea. Obstructive sleep apnea affects approximately 30 million Americans. It is characterized by recurrent episodes during sleep when the throat closes and prohibits air from entering the lungs (apnea), thus causing breathing to stop for a short time.

Sleep disorders
Sleep Disorders Fact Sheet - Reference guide to common sleep disorders, their causes, symptoms, and treatments.