What Special Equipment Will My Child With Angelman Syndrome Need?

What Special Equipment Will My Child With Angelman Syndrome Need?
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Angelman syndrome is a complex neurological disorder characterized by symptoms such as scoliosis, walking difficulty, balance issues, behavioral problems, and seizures. If your child is among the 1 in 15,000 people with the disorder, you will likely need to provide aids and adaptations to help them with mobility and communication as well as to perform daily tasks.

For infants

If you have an infant with Angelman syndrome, he or she may have poor sucking ability and problems swallowing. In addition to alternate breastfeeding methods to improve feeding, you may want to try nipple shields. Usually made of thin plastic, these shields resemble a little hat with a brim. The hat’s crown fits over the nipple and the brim lies over the areola, the darker area of skin surrounding the nipple. Nipple shields can help your infant get a better latch and more milk.

Leg and back braces

Severe developmental delays can cause balance issues, walking difficulty, muscle weakness in the torso and legs, and scoliosis. Ankle braces and supports can help correct your son or daughter’s gait and improve his or her walking ability. Back braces may help prevent scoliosis progression and may also improve balance. A physiotherapist can recommend the right braces for your child.

Help with communication

As your child grows, he or she will likely have problems communicating. Augmentative and alternative communication systems could help. These systems include all the ways we share our ideas and feelings without speaking. They may be complemented with a communication aid that uses some kind of tool or device. A pen and paper are examples of basic communication aids. There are also high-tech communication aids such as speech-generating devices, which can speak for your child. A wide range of voice output communication aids are available, from simple single-message communicators to dynamic display communication aids. Speak with your child’s speech language pathologist about options.

Other equipment or modifications

There are many other products available to help your child, including specially crafted forks and spoons, special toothbrushes, and other personal care equipment, as well as high-tech wheelchairs and hoists.

If you are able, you may want to make home modifications such as adding a wheelchair ramp or wheelchair-accessible doorway, double stair banisters, or a through-floor lift.

Decisions, decisions

What your child needs may be different than what another child with Angelman syndrome requires. Remember that what you do end up choosing after consulting with your son’s or daughter’s healthcare team can usually be customized and modified as your child’s needs change.

Generally, adopting a wait-and-see attitude, rather than trying to plan immediately after diagnosis for every possible future scenario, will likely save you time, worry, and expense.

 

Last updated: April 20, 2020

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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