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Stickler Syndrome Treatment Options

Eyes

All infants and children with Stickler syndrome should be evaluated and followed on a regular basis by an ophthalmologist (doctor who treats eyes).

A careful evaluation for cataracts and glaucoma is recommended. Regular eye visits are needed to check for early signs of retinal detachment, which can lead to blindness if not treated. Not playing contact sports may be advised.

Hearing

Children with cleft palate due to Stickler syndrome require close follow-up of hearing for both middle ear dysfunction, which can result in conductive (bone) hearing loss, and progressive high-tone nerve hearing loss.

Joints

The bone and joint concerns in childhood typically include increased joint hypermobility and occasional joint stiffness.

Infants with Stickler syndrome born with clubfoot deformity should be referred to a pediatric orthopedist.

All children with Stickler syndrome should be clinically evaluated for scoliosis.

Later in life, treatment for adult arthritis includes pain relief, avoidance of high-impact physical activity and joint replacement as needed.

Mouth

The cleft palate is typically repaired between 9 and 12 months of age by a team surgeon to allow the child to learn to speak normally.

Ongoing assessment of speech and language, dental development and jaw growth as part of regular cleft care is recommended.

As with other infants with cleft palate, early treatment includes feeding evaluation and use of a cleft nipple or bottle.

Treatment of Infants with Pierre Robin Sequence Due to Stickler Syndrome

Infants with Pierre Robin sequence (PRS) due to Stickler syndrome are treated the same way as other babies with PRS.

Careful evaluation of breathing and feeding is very important. Some babies with Pierre Robin sequence can be positioned on their belly so that they do not snore or block their airway.

Other babies have such a small jaw that a tube must be placed in their nose to allow them to breathe easier, and some infants must have a surgical tracheostomy (a breathing tube placed in the windpipe).

Infants with Pierre Robin sequence often have a hard time taking all of their nutrition by bottle because of breathing problems.

Sometimes a feeding tube from the nose to the stomach is needed. If the feeding tube is needed for many months, often we will recommend a surgical gastrostomy tube (through the abdominal wall to the stomach) placed.

Often infants with Pierre Robin sequence do not have their cleft palate repaired until they are 15 to 18 months old so their jaw has more time to grow and their breathing symptoms improve.

Some children with Pierre Robin sequence may have the option of surgery to move the lower jaw forward.

This can be done through a single surgery known as mandible osteotomy or over a period of two to three months through distraction osteogenesis, a technique that uses a device to pull the jaw slowly forward.

Who Treats This at Seattle Children's?

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Summer 2014: Good Growing Newsletter

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