How Can Physiotherapy Help My Child With Sanfilippo Syndrome?

How Can Physiotherapy Help My Child With Sanfilippo Syndrome?
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If your child has Sanfilippo syndrome, physiotherapy can likely help with symptoms that include spasticity and the progressive loss of mobility. Here are some things to consider.

What is Sanfilippo syndrome?

Sanfilippo syndrome is a rare neurodegenerative disorder characterized by continuous intellectual and behavioral disability. Typically, it progresses in three stages, beginning with developmental delays, particularly in language. In the second stage, children exhibit behavioral and sleep abnormalities, and thinking abilities decline. In the third stage, patients may lose mobility as motor skills deteriorate and neurologic problems come to the fore, including difficulties with feeding and seizures.

Physiotherapy may help with managing some of these challenges, particularly  if begun at earlier stages. Sanfilippo is marked by regression, or the loss of existing skills. Physiotherapy may help to slow regression.

What is physiotherapy?

Physiotherapy is the management of mobility, balance, and pain through approaches like exercise, massage, and manipulation.

How can it help?

Children with Sanfilippo syndrome often have poor coordination and a “clumsy” walk. They may have skeletal abnormalities and stiff joints that do not extend fully. In advanced stages, distal spasticity of the lower limbs may further hamper walking.

Physiotherapy and daily exercise may improve joint stiffness, delay joint problems, and improve the ability to move. Such treatment may also be able to help alleviate arm and leg jerking and kicking, as well as spasms with attendant rigid arms and legs that are also associated with this disease.

If your child is immobile, it’s important to make sure that he or she sits with proper support to avoid uneven pressure on particular joints. If a deformity develops at an ankle joint, making walking difficult, special braces may help. A physiotherapist can prescribe these aids and adaptations for your child, and help with using them.

Depending on the disease stage, type, and severity, physiotherapy can be important to a child with Sanfilippo.

How do I find a physiotherapist?

You can get a referral to a physiotherapist from your child’s primary physician. You can also seek advice and aid from patient support groups, such as the Sanfilippo Children’s Foundation, the National MPS Society, and the Team Sanfilippo Foundation.

 

Last updated: Aug. 11, 2020

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Sanfilippo 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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