Magazine article The Exceptional Parent

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Magazine article The Exceptional Parent

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Pierre Robin sequence variant

I am an early intervention specialist working with a 16-month-old child who has several special needs. They include: severe anomalies of the jaw, tongue, uvula, and palate; and no mobility in her jaw. She is also non-verbal; has a tracheostomy; and gastrostomy button; and mild hearing loss. In addition, she has recently been diagnosed with unspecified heart problems. CT scans have come back normal.

She has been diagnosed with a variant of Pierre Robin sequence (a combination of a small jaw, cleft palate, and the forward displacement of the tongue, producing facial deformities).

The prognosis for speech and feeding is unknown. She does appear to be cognitively intact with good receptive language skills and she uses gestures, eye blinks, and breathing to communicate. She and her family are learning sign language.

She is unable to accommodate a small spoon beyond the front of her mouth. There is little room for growth, and her teeth are beginning to come in. Tooth decay is also a concern because she cannot get a toothbrush in. Physicians believe she can undergo several surgeries when she is between 5 and 6 years old. Her family would very much like to find and share information with others who may have experienced similar conditions. Any support or information that could be of benefit would be greatly appreciated.

J.F., Kaysville, Utah

Editor's Note: for more information, contact: the Craniofacial Foundation of America at (800) 418-3223.

Pervasive developmental disorder--help!

I am writing about our 3-year-old son John, who has been diagnosed with pervasive developmental disorder (PDD). He developed all of his gross motor skills (including sitting, walking, and crawling) right on time, and physically he is of normal height and weight. He has always had this habit, however, of "twirling" things such as straws, pens, etc., and we are not sure why he does this. Also, he is able to make all of the necessary sounds to speak, yet his speech has never really developed. It is questionable as to what he can understand, because most of the time he seems to be in his own world. His hearing tests have come back normal, (though he has tubes in his ears because of infections). …

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