How Can Physiotherapy Help My Child With Sanfilippo Syndrome?
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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