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Craniofacial Surgery: Tennessee Craniofacial Center Erlanger Health System

Erlanger on Apert:
A PDF File

Nat'l Org. for Rare Disorders: Apert's & Related Conditions

Craniofacial Work at Columbia:

Apert Syndrome: Faces-Cranio Disorders

Clinical Variability in Patients:



Apert Isn't the Only Thing
Andrew Is More Than Hyperkinetic:
He's Also ADHD


Andrew, not unlike most boys, tends to have more energy than focus. For most of early developing years we could even appreciate that such energy was a welcomed sign of healthy development. His early prospects held no such guarantee.

However, Andrew's inital foray into formal study — first grade — revealed that his unfocused, over-the-top energywasn't just a case of "boys will be boys."

His first grade teacher suggested as much at our first review with her.

"It's nearly impossible to get Andrew to focus; he'll fall hopelessly behind if something isn't done."
Such reflected the admonition from Andrew's teacher who, admitting that she was well-acquainted with overly energetic first-grade boys, said Andrew's lack of control was more serious.

So Sherri and I took Andrew to see two different specialists. Both of them concurred that Andrew was a classic case of Attention Deficit HyperActivity Disorder (ADHD).

There was some initial reticence, given that we have heard so much of the abuse of parents wanting to control a boy's excesses and disruptiveness by "snowing" him over with ritalin or something similar.

But we had to do something, so we granted a trial of metadate, a time-release variant of ritalin, but at the lowest dose possible.

Fortunately, the medication didn't dramatically change our son, but the teacher DID remark soon thereafter that she could finally get his attention. She could reach him; it still wasn't easy (as he was not a natural academe — he still preferred to play), but he was now able to pay attention. even if somewhat reluctantly.

Since then, we've also tried mild variations of dose and he has been seeing another specialist, a Dr. Bernhard, who has been working with Andrew to recognize and exercise some degree of cognitive control over his overwound behavior.

This will take time, for sure. After all, his father was labeled "hyperkinetic" in his day and it took the eventual, if not inevitable, drop in metabolism at age 25 or so to discernably register a dramatic change in behavior.

Nobody today would ever call Andrew's dad "hyperkinetic" today.

Hope, indeed, springs eternal. And our Andrew is making progress. Although it takes the special attention of parents, teachers, special "tutors" in the school program and psychologists, in concert, trying to orchestrate a cohesive symphony from the melodies and racing time signatures in the composition we know and love as our Andrew.




Apert Support Group at Harvard.

Andrea's Page. Personal account from Andrea Gartner, a college student with Apert Syndrome.

Amy's Page. Personal account from Amy Esler, a girl with Apert Syndrome.

Apert ListServ. An archive of ListServ postings on Apert Syndrome.

ApertInfo: Story of Matthew Romero, in conjunction with Children's Hospital of Boston.

OTHER RESOURCES (These Links Will Open In New Browser Windows)

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