Magazine article The Exceptional Parent


Magazine article The Exceptional Parent


Article excerpt

Multiple disabilities, undiagnosed

D.H., Mt. Lake Park, Maryland (March 1998), has a son with a seizure disorder, developmental and speech delay, a heart murmur, insomnia, and an umbilical hernia, among other disabilities. D.H. is looking for someone who has a child with the same symptoms. L.M., Lenexa, Kansas (July 1998), responded with the suggestion that D.H. look into epidermal nevus syndrome (ENS) (a rare disorder characterized by distinctive, colored birthmarks on the skin; neurological and skeletal abnormalities may also occur).

My son, Justin, was diagnosed with ENS when he was eight years old. He was born with the characteristic birth marks, low muscle tone, strabismus in both eyes, (cross-eyes, or squint); mild learning disabilities, Tourette syndrome, seizure disorder, GERD (Gastro Esophageal Reflux Disease), square and notched teeth, a hyperextended left knee, right renal agenesis (absent right kidney), fine and gross motor delays, frequent migraine headaches, and social skill problems. He received a normal MRI, genetic testing, and abnormal EEGs.

After my son's diagnosis, the Nevus Network asked me to start a group for ENS, which I have done. I offer medical articles, and parent to parent contact and support.

Cathy Atkins

Epidermal Nevus Syndrome

Support & Information

19 Benton St.

Middleboro, MA 02346

Unable to toilet train

M.H., West Monroe, Louisiana (June 1998), has a four-year-old daughter who was born prematurely with a large tumor on the coccyx of her spine known as a saccrococgyeal teratoma. The tumor involved her lower spine, and buttocks muscles and was removed a month after she was born. Her bottom was then surgically reshaped. Her daughter has had additional complications of prematurity which have caused developmental delays. M.H.'s most recent concern is her daughter's inability to toilet train, and she would also like to hear from parents of children who have periventricular leukomalasia due to brain injury at birth.

As I read your letter, I could have been reading my eight-year-old daughter's medical history. Kelly was also born prematurely, though the doctors found the saccrococgyeal teratoma on a sonogram when I was 26 weeks pregnant. …

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