Occupational and Physical Therapy


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Infancy: Occupational and Physical Therapy

Significant hypotonia or motor delays require therapy from an occupational therapist (OT) and/or physical therapist (PT) during the first year. This can be obtained through an infant stimulation program, which should also include a language therapist. Such programs work with the child and the parents to teach them how to stimulate the baby optimally at home. If the mother herself is severely learning disabled or retarded because of FXS, intervention is essential to teach appropriate parenting skills and to provide ongoing guidance.

Infancy: Otitis Media/Sinusitis

Beginning in the first year of life, frequent otitis media (middle ear infections) are a problem for approximately 60% of boys with FXS (Hagerman et al. 1987). As discussed in chapter 1, this problem requires vigorous therapy to avoid a fluctuating hearing loss that may further compromise language development. If a conductive hearing loss persists after acute antibiotic treatment, the physician should consider the insertion of polyethylene (PE) tubes through the tympanic membrane to normalize hearing. A recent intriguing study evaluated the use of xylitol, a commonly used sweetener that is effective in preventing dental cavities and inhibiting the growth of pneumococci, in the prevention of acute otitis media (Uhari et al. 1998). In 857 normal, healthy children recruited from day care centers, xylitol syrup or xylitol chewing gum significantly decreased the incidence of acute otitis media by 30-40% compared to controls. Recurrent sinusitis is also a frequent problem in FXS, and it may be related to the facial changes or the connective tissue problems that lead to recurrent otitis in FXS. Prophylactic antibiotics may be helpful to decrease the incidence of recurrent otitis media and/or recurrent sinusitis. Rarely ENT surgery may be necessary to improve drainage of the sinuses.

This article is not intended to give medical advice for individual cases. Any change in medical treatment should be done in consultation with appropriate medical personnel. This article is written for medical professionals. Some of the terms will be unfamiliar to those who are not trained in medical fields.

*This article is from the chapter on treatment in the 3rd edition of Fragile X Syndrome: Diagnosis, Treatment, and Research edited by Randi Jenssen Hagerman, M.D. and Paul Hagerman, M.D., Ph.D., to be published May 2002. It is included with permission from The Johns Hopkins University Press. References to other chapters refer to chapters in the book which are not included as part of this website.

The complete 3rd edition of Fragile X Syndrome: Diagnosis, Treatment, and Research can be ordered from the National Fragile X Foundation by calling 1-800-688-8765 or from The Johns Hopkins University Press at 1-800-537-5487.

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