Magazine article The Exceptional Parent

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Magazine article The Exceptional Parent

Respond

Article excerpt

Undiagnosed with myoclonic seizures

H.D. and J.D. Merrick, New York (August 1998), have been looking for a diagnosis for their two-and-a-half-year-old son since he was six months old. He has severe hypotonia, global developmental delay, and myoclonic seizures (a brief muscle jerk which usually involves the shoulders and upper arms) during sleep. H.D. and J.D. are looking for other parents with a similar child and are wondering if there are any support groups for parents of undiagnosed children. Finally, H.D. and J.D. have always wondered if the medicine, Pitocin[R] (given to induce labor), might have something to do with their son's current state.

Our four-and-a-half-year-old son, Adam, was also having the same seizures when he was an infant. At first, we thought the seizures were voluntary movements or perhaps responses to gas, since Adam had gastrointestinal problems as an infant. Concerned, we took him to the pediatrician and we were referred to a pediatric neurologist.

After some testing, the doctors concluded Adam had myoclonic seizures. However, we did not understand why he was "floppy," had crossed eyes, a very high and narrow palate (not cleft), and his toes looked mashed together.

We decided to enlist our son in physical, speech, and occupational therapy, and early intervention. When Adam was three, we entered him in a center-based school program. An initial evaluation with their phsysciatrist (a physician who specializes in rehabilitation) informed us that Adam has spastic quadriplegic cerebral palsy (a form of cerebral palsy in which all four limbs are equally affected).

I have since developed a support network of professionals, parents, friends, and family who continue to see me through Adam's triumphs and set backs.

M.M., East White Plains, New York

No diagnosis, brain damage from hypoxia; bowel dumping syndrome

B.S., Baton Rouge, Louisiana (October 1997), has a three-year-old son who has hydrocephalus, agenesis of the corpus collosum (absence of the two transverse fibers connecting the two cerebral hemispheres), frontal nasal dysplasia (smaller than normal nasal passages, affecting the size and placement of the facial features), syndactylism on one hand and one foot, bilateral shunts, and has developed "bowel dumping" syndrome after his fundoplication. …

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