Juvenile-HD

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SECTION 22 - ARTICLES/JHD
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SECTION 23 - CAREGIVING
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SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
Epileptic Seizures and Epilepsy

INDEX Page

Seizures
Can be a normal symptom of juvenile HD in some children/young adults. Typically it is when the child is overly tired or active/stimulated. 
 
Some signs of an approaching seizure can be recognized.  Their chorea will intensify, they will start to sweat profusely and their eyes will start to dilate.  If you recognize these signs immediately and get the child into a calm, quiet atmosphere by eliminating all noises and distractions, your child might start to calm down on their own which might stop them from going into a full blown seizure.
 
If the child starts to go into a seizure, when the pupils of their eyes become pinpoints, you might be able to "call them out of it" by yelling, very calmly, in their ears calling them by name and telling them to calm down, everything will be all right that you are right there, over and over.  This did work with Kelly's seizures to the amazement of her Hospice nurses.
 
Also see the Neurology Channel information on seizures.  Click on topic to be taken there:

As Caroline watched her 3-year-old son, Will, playing, he suddenly flew 3 feet backward and landed on his bottom. Caroline thought he was just playing, but after Will picked himself up, it happened several more times in 10 minutes, "like it was a broken record or as if a poltergeist had done it," she remembers.

In addition to occasional "poltergeist" episodes, sometimes Will would focus on a single topic repeatedly. "One day it would be my sister's boat or airplanes or whatever, over and over," she says. Other times, he would just stare with a vacant look on his face, after which time he would become very sleepy.

"This was terrifying for me," Caroline says. "He seemed alone and frightened. After this we went to the doctor." What Caroline didn't know at that time was that Will was experiencing epileptic seizures. Read on to learn more about epileptic seizures and epilepsy.

What Are Seizures and Epilepsy?
Seizures are the primary symptom of epilepsy. Seizures occur when the brain's electrical signals misfire and a person's consciousness or actions are altered for a short period of time. When the electrical signals return to normal, usually within a few seconds or a few minutes, the seizure stops.

Epilepsy is characterized by recurring seizures. It is not contagious and usually not hereditary, although a predisposition to seizures may be apparent in certain families.

Epilepsy, a word of Greek origin meaning "to hold or seize," is a fairly common neurological condition caused by brief bursts of electrical impulses in the brain. Seizures may be triggered by repetitive sounds, flashing lights, or touch to certain parts of the body. Epileptic seizures affect about 2 million Americans of all races and religions, and both genders. Epileptic seizures are most likely to appear in two stages of life: either before age 15 or after age 65.

Seizures usually occur without warning and without the person's awareness of what is happening. Some people with epilepsy will have only an occasional seizure, while others will have many on a daily basis.

Many children will eventually outgrow their seizures. Having a single seizure does not necessarily mean that someone has epilepsy. For instance, an infant or young child with a rectal temperature higher than 102 degrees Fahrenheit (38.9 degrees Celsius) may lose consciousness and shake for a minute or 2 but most febrile seizures are harmless to the child and do not indicate epilepsy.

Types of Seizures
There are several different types of seizures. Seizures are known as generalized seizures if the whole brain is misfiring, and partial seizures if only one part of the brain is affected. Some of the most common types of seizures are:

  • Convulsive seizures (tonic-clonic or grand mal seizures): symptoms may include a sudden cry, loss of consciousness, falling, loss of bladder or bowel control, and uncontrollable shaking of the entire body. These seizures are generalized.
  • Absence seizures (petit mal seizures): symptoms include staring blankly without a loss of consciousness, rapid blinking, chewing actions, or twitching facial muscles. These seizures are generalized.
  • Simple partial seizures: These occur while a person is awake. Symptoms may include abnormal sensations or movements of a certain part of the body while the person is awake; one part of the body, arm, leg, or face may jerk.
  • Complex partial seizure: These begin with a 1- to 2-minute period during which the person loses touch with surroundings. Similar to an absence seizure, but it is followed by random actions such as picking at clothing or trying to remove it.

Diagnosis of Epilepsy
A specific cause cannot be determined for the majority of children who are diagnosed with epilepsy. Factors that may be associated with epilepsy include birth injury, brain tumors or head injury, environmental toxins, infections such as
meningitis or encephalitis, abnormal brain development, genetic conditions like tuberous sclerosis or heart rhythm abnormalities.

To help a doctor make a diagnosis, you should carefully document your child's behavior, including when the seizure occurred, how fast it started, duration, and the events that happened during and after the episode (whether it involved abnormal muscle movements such as spasms of the head, neck, or facial muscles, tongue biting, or loss of bladder control). Consult a doctor immediately if your child shows any of the following symptoms:

  • "blackouts" or periods of confused memory
  • long periods of staring or unresponsiveness
  • involuntary shaking or jerking of the arms and legs
  • fainting spells with loss of bladder control
  • excessive fatigue
  • irrational fears, odd verbal utterances, or distorted (hallucination-like) perceptions of reality

For children who experience seizures, a series of tests will usually determine the cause of the seizures. The number and types of tests used to diagnose epilepsy are different for each patient. An elecrocephalogram (EEG) is a test that measures electrical activity in the brain, and is frequently used to diagnose epilepsy. Some other common tests include CT scans, MRIs, and PET imaging. All of these tests are painless and harmless to the patient.

Treatments for Epilepsy
New medications, surgery, and a device similar to a pacemaker called an implantable vagal nerve stimulator now offer significant control of seizures, even for children who do not outgrow the condition.

Seizures need to be treated for several reasons. Rapid muscle contractions can cause bodily harm such as broken bones. In addition, a sudden loss of consciousness can cause serious injury from falls and accidents.

Medications are the most commonly used treatment for epilepsy. Treatment depends on the type of seizures (generalized or partial) seen with a child's epilepsy. Usually a single drug is given, such as carbamazepine, valproate, gabapentin, phenytoin, topiramate, and lamotrigine. Others have recently been FDA approved for children. Most children respond well to medication.

Antiseizure drugs are very effective; however, they may have side effects such as drowsiness and weight gain. In addition, your child's doctor will order blood tests periodically to make sure the drugs aren't affecting the kidneys, liver, or blood cells.

How Epilepsy Affects Learning
Recurring seizures may interfere with your child's learning ability because of frequent lapses in attention. Children with epilepsy are eligible for special education services under the Individuals with Disabilities Education Act. Some children with epilepsy benefit from special education interventions that include speech therapy and individualized instruction. Your child's doctors and teachers can help you decide whether your child would benefit by enrolling in an early intervention or special education program in your local school.

New Interventions
New interventions may be useful in helping your child control his epilepsy. A vagal nerve stimulator implanted on a child's clavicle offers significant relief in intensity and frequency of seizures for 30% to 60% of the patients who have tried it. There are none of the side effects typically seen with medication. The implanted electrode sends continuous seizure-blocking signals to the brain through a nerve in the neck. When a child (vagal nerve stimulators are implanted in children older than 12 years) senses a seizure coming on, he can activate the electrode to send an anticonvulsive impulse to the brain.

Surgery for epilepsy in children is considered only in those who are not helped by medication and whose seizures severely reduce their quality of life and future development. Surgery is done only in carefully selected patients, usually those with a known focus (part of the brain) that is responsible for causing the seizures. For example, epilepsy in children that comes from scarring in the temporal lobe of the brain has an 85% chance of being corrected with surgery.

For children who are not helped by medication or surgery, a special diet known as the ketogenic diet may significantly alleviate daily seizures. Very high in fat and low in carbohydrates, the diet is prescribed and monitored by a doctor.

Talking to Your Child About Epilepsy
The American Academy of Pediatrics recommends that children learn about their epilepsy so they can learn how to manage their condition.

You should:

  • listen to your child's feelings of frustration, anger, fear, or guilt (reassure your child that it is not his fault)
  • explain, in terms your child can understand, what happens during an epileptic seizure, how treatment will help him, and what he should do when a seizure occurs
  • assure him, if he is concerned about it, that it is extremely rare for someone to die during a seizure
  • "rehearse" a visit to the hospital with your child, especially prior to any surgical procedures
  • introduce your child to other children with epilepsy
  • emphasize your child's abilities and talents
  • openly talk about epilepsy and your child's treatments so that family and friends are comfortable with the condition

Within 5 days of starting his new medication, Will's seizures stopped completely. But just as encouraging was the change in Will himself. Always a happy child, Will seemed even happier and freer. Previously slow in speech development, he began talking more often. Will began to watch television for the first time. Caroline laughs that she is the only mother who is happy to see her child watching Barney.

Both Caroline and Will's doctor hope that he will outgrow his epilepsy, as many children do.

Updated and reviewed by: Kim Rutherford, MD
Date reviewed: October 2001
Originally reviewed by:
Steve Dowshen, MD

 

A seizure, also known as a convulsion, is a brief period of unconsciousness or altered conciousness. It may be accompanied by one or more of the following symptoms: falling; uncontrollable and involuntary muscle spasms; drooling or "frothing" at the mouth; loss of bladder or bowel control; a temporary halt in breathing.

Seizures are caused by abnormal discharge of electrical stimulation in the brain and are associated with many medical conditions. Most convulsions in infants and toddlers are caused by fever. While terrifying to parents, these seizures are usually brief and rarely cause any lasting damage. Seizures may also be caused by salt imbalances in the blood, gastrointestinal disease, poisoning, head injury, brain disease such as a tumor, a malformed blood vessel, or anything that causes sudden lack of oxygen to the brain. Repeated convulsions may indicate the chronic condition epilepsy.

Your primary goal during a seizure is to keep the child's airway open. Blocked passages may deprive the brain of oxygen, leading to brain damage. Your secondary goal is to keep him from hurting himself.

What to Do:
If the child is having trouble breathing, his airway may be blocked. Place him face down or on his side to allow secretions to drain and the tongue to come forward.

If the child is not breathing, or if his lips start to turn blue, make sure the airway is clear and then give mouth-to-mouth resuscitation.

If the child is breathing without difficulty, place him on the ground or floor in a safe area. Move all objects away from him, and place cushions around his head if possible. Loosen tight clothing. Do not try to wedge his mouth open or place an object between his teeth, and do not attempt to restrain his movements.

If breathing is normal and the seizure lasts just a few minutes, you can wait until it has subsided, then call your doctor. If breathing is troubled, or the seizure lasts longer than a few minutes, you should get him to a hospital immediately - call an ambulance. You should also get immediate medical attention if you suspect your child has accidentally taken any poisons, medications, etc. which should be considered, especially if he is a toddler and has not had a fever or been ill.

Following the seizure, the child will probably fall into a deep sleep. This is known medically as the postictal period. This is normal, and you should not try to wake him. Do not attempt to give him food or drink until he is awake and alert.

A seizure caused by fever may be followed by another; if the child still feels hot, give him fever-control medicine, and cool him by sponging with cool (not cold) water. This is especially important if you are taking the child to the hospital, in order to prevent more seizures on the way.

Following a seizure - particularly if it is a first or unexplained seizure - call your doctor or emergency medical service for instructions. Your child will usually need to be evaluated by a doctor as soon as possible.

Reviewed by: Kim Rutherford, MD
Date reviewed: June 2001
Originally reviewed by:
Steve Dowshen, 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/