Magazine article The Exceptional Parent

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Magazine article The Exceptional Parent

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Down syndrome and alopecia areata

We have a seven-year-old girl who has Down syndrome and has developed alopecia areata (hair loss which is secondary to a variety of conditions which includes trauma, side effects of certain drugs endocrine disorders, and ringworm) over the past three years. Her hair regrows in the summer and sheds in the fall.

We have visited the pediatrician, dermatologist, nutritionist, and health food stores without success.

We are looking for other families who are currently dealing with this. We would also appreciate any information regarding treatments, causes, supplements, and coping strategies.

M.P., Richmond Hill, New York

Undiagnosed movement disorder

My three-year-old son, Davy, has a severe undiagnosed movement disorder. My pregnancy was full-term, but complications arose during delivery where Davy's head became lodged in the birth canal and a C-section was performed. His development appeared to be typically progressing until he was 18 months old. At this point, he began dragging his leg when he walked.

His motor skills are inconsistent and tend to fluctuate from day-to-day, and have continued to decline as he is currently unable to walk or crawl. His movement is extremely uncoordinated and his balance is poor. He understands and is able to repeat words. Expressively, he is often unintelligible when he attempts to use short sentences. This is because he has trouble catching his breath, making it difficult for him to form words.

Over the past several months, he has started having eating and swallowing problems, and in the past few weeks he has begun drooling, become easily fatigued, and has a fruity odor.

Davy has bilateral cataracts, and his height, weight, and head circumference are at or below the fifth percentile for age. He has tested positive for an elevated lactic acid level but, an EEG, MRI, muscle biopsy, and extensive metabolic work-up have all come back with no abnormalities identified.

I would like to hear from other parents who have a child with similar symptoms who have received a diagnosis.

O.B., D Lo, Mississippi

Tuberous sclerosis syndrome--offering answers

I was diagnosed in 1985, at age 44, with tuberous sclerosis syndrome (a syndrome of multiple raised skin lesions that may vary from white or yellow to brown and are usually on the face. There are also renal cysts, tooth enamel defects, mental retardation, and seizures). …

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