Epilepsy Talk

Aids for Parents of Kids with Epilepsy | July 31, 2012

Support Groups http://suite101.com/article/epilepsy__support_groups-a7235 Most kids with epilepsy think they’re all alone. (I never met anyone with epilepsy until I was 29!) Epilepsy Support Groups help you share information, give support, get understanding and encouragement from others in the same situation.

Some places to find support groups include your local Epilepsy Foundation affiliate, hospitals, or your family neurologist.

And online support can be found at  http://my.epilepsy.com/

Living with Epilepsy — Youth Issues http://my.epilepsy.com/forum/118

Young Adults and Epilepsy http://epilepsyfoundation.ning.com/forum/categories/young-adults-and-epilepsy/listForCategory

Seizure Dogs http://www.canineassistants.org/about/our-dogs.html Following general training, seizure response dogs are trained to perform the following behaviors, depending on the recipient’s need. Whether it’s remaining next to the person during the course of a seizure… summoning help in a controlled environment…or retrieving a phone prior to the seizure when indicated by the recipient. Some dogs can even fetch necessary meds!

Certain dogs may even develop the ability to predict and react to an oncoming seizure in advance, once they are placed with their recipient.

Paws With A Cause http://www.pawswithacause.org/Home/tabid/616/Default.aspx Trains Assistance Dogs nationally for people with disabilities and provides lifetime team support. PAWS Service Dogs are typically Labrador retrievers, golden retrievers, or retriever mixes. All dogs must pass a specialized temperament test and comprehensive health screening to enter the PAWS training program.

Most PAWS dogs have been raised from puppyhood by a volunteer Foster Puppy Raiser, and many have been bred specifically for Assistance Dog work.  Some dogs are donated by private individuals or breeders, while others may have been rescued from shelters and rescues. Occasionally, a client’s own dog may be trained as their Assistance Dog.

The dog must be between 16 and 36 months old, of an approved breed, and able to pass extensive temperament and comprehensive health screenings.

Canine Partners for Life http://www.k94life.org/html/seizure_alert.htm These seizure alert dogs are able to predict seizure activity, anywhere from several minutes to an hour before the seizure occurs. Through its sense of smell, the dog detects the chemical and electrical changes within a person’s body caused by seizure activity.

Often, a dog will nudge/bump/paw its partner, or give a small whine. If the person is walking, the dog will interfere with the person’s movement, blocking their path and causing them to stop. These dogs are very reliable and consistent in their work. Their alerts are typically the same amount of time prior to each seizure, which gives a sense of control and management to the human partner.

Speaking about seizure dogs, WebMD reports: http://www.webmd.com/epilepsy/news/20040621/dogs-anticipate-epileptic-seizures 42% of families reported seizure-specific reactions from their dogs. About 40% of these dogs showed these behaviors in anticipation of the seizure.

Breeds with this ability included Golden Retriever, Standard Poodle, German Shepherd, Akita, Rough Collie, Rottweiler, Cairn Terrier, Great Pyrenees and one mixed breed dog.

Dogs acquired this ability after about one month with the family — generally with the first seizure the dog witnessed. The typical response was licking the child’s face, protecting the child, and whimpering; the dogs were never aggressive or harmed the child.

Also, the dogs were rarely wrong, Kirton reports. Sometimes the seizure alert behavior was just ten seconds before the seizure; in other cases, the alert came up to five hours before.

Seizure Monitors

The MP5 is the most popular seizure monitor with over 6,000 monitors in use worldwide.

MP5 Convulsive Seizure Detector Single Sensor Alarm http://bedseizurealarm.com/mp5–motion-alarm-for-convulsive-movement-such-as-seizure5.html The MP5 is used for people above 56 lbs (for monitoring 1 person) and is supplied with two radio pagers.

The sensor is placed between the bed base and the mattress. When a seizure begins, the muscular convulsions are detected by the bed sensor(s). All models feature an adjustable delay control, used to allow a certain amount of movement before an alarm is generated.

The bed sensor sensitivity level can be adjusted to compensate for patient weight, type of bed base and mattress type. All Medpage models feature an anti-tamper alarm to warn if it’s switched off by the patient.

And although these seizure monitors can’t make any guarantees, they can go a long way towards detecting danger. And maybe even saving a life. Many different brands and models are available.

Fun and Functional Kids Medical Bracelets http://www.n-tyleid.com/children.html Children’s Medical ID Bracelets are interchangeable and come with one slider ID tag which works with all bands so that your child can mix and max, for fun or function. There’s a variety of styles in material and buckle choices.

Ultralight Kid’s Medical Bracelets are the perfect choice for children’s sports activities with bands are made of durable nylon webbing and a center push plastic buckle.

Jelly Bands are the perfect medical bracelets for kids who like to get wet. Waterproof and latex-free.

Oneida Medical Jewelry http://www.oneida-medical-jewelry.com/ Child/Infant Vinyl Shoe Tags or Pin-On Tags which are brightly colored vinyl to attract attention. (Isn’t that brilliant?) There are also children’s necktags, necklaces and bracelets of stainless steel, engraved with the child’s information.

Lauren’s Hope http://www.laurenshope.com/category/111/medical-id-alerts-for-kids-and-girls Has medical ID jewelry ranging from casual to elegant…bracelets, necklaces, ankle bracelets…you can even create your own personalized, custom design. And they have medical-alert watches and pill boxes with built-in alarms.

While there’s tons of fun and attractive children’s jewelry out there, it’s also important to know about The Medical Alert Foundation. http://www.medicalert.org/  Medics recognize it and you can change your child’s information, when needed. (Like if their meds change.) They also know whom to contact, especially if he/she ends up in the hospital. The price for membership is just $30 a year. And if you have an “Advance Directive,” they will include it with your information — FREE.

Another life-saving option is the Medical Text ID https://www.hopepaige.com/text-id.aspx A powerful Medical ID in case of emergency. It assigns your child a unique personal identification number (PIN) that is displayed on a wallet card, key chain, sticker or snap-on device that can be worn on clothing. The PIN is linked to an online account that you can set up on their secure iB Web site. Your online account has information about who your child is, what medications and allergies they have and up to ten emergency contacts.

Medication Reminders http://www.epill.com/  E-pill is a company that sells a wide range of medication reminders and organizers to help patients remember to take their medicines as prescribed. There’s also a Medical Alert Alarm Watch and a six Alarm Voice Clock, among other options.

The Ketogenic Diet http://www.epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet/index.cfm?gclid=COrah9TMxLECFcne4AodxSkAww Children with seizures who are not successfully treated with medication and who are not candidates for epilepsy surgery can be considered for the Ketogenic diet.

This very high-fat diet has been used for many decades, and seizure-free rates of up to 25 percent have been reported. The diet requires a team approach, with expert input from neurologists, dietitians, skilled nursing staff and gastroenterologists.

Vagus Nerve Stimulation http://www.epilepsyfoundation.org/aboutepilepsy/treatment/VNS/overview.cfm?gclid=CLKn5ovNxLECFUXc4Aodo3wALA Vagus Nerve Stimulation (VNS) is another treatment option for children who do not respond to medication, are not candidates for epilepsy surgery, and will not tolerate or have not responded to the Ketogenic diet.

How the VNS works is unknown. Complete control of seizures cannot be expected with the VNS, but approximately 50 percent of patients have a 50 percent reduction in seizures after 1-2 years.

In some children, seizures are shorter, or the postictal state is less disabling; some seizures can be aborted by activation of the VNS during the aura.

As you can see (and probably knew before), there are many options available. But ultimately, it’s the choice of you and your child.

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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