Strollerderby : disorders

Rare Condition Makes Boy Look Like Werewolf

Brett Singer — Mon, 24 Nov 2008 15:00:00 GMT

Ordinarily I would expect a headline referring to a child as "Wolf Boy" to appear in the Weekly World News and to be completely false. This time, however, it's real.

Pruthviraj Patil, an 11 year old boy from India, "suffers from a rare genetic disorder known as hypertrichosis - or "werewolf syndrome" - which causes a thick coat of hair to grow over every inch of his body except his palms and feet," according to the New York Post. This video from "My Shocking Story" on TLC shows other people who share Pruthviraj's pain. (Warning: it's slightly disturbing and very sad since these are real kids suffering from a rare and bizarre condition, which is " estimated to afflict fewer than 50 people on the planet," according to the Post.)

However, a group of scientists at Columbia University may have discovered a cure, which came out of their research on baldness. Pruthviraj has started on a treatment program the scientists have developed, and hopes that the excessive hair will go away. While the Post says that the boys' "friends and neighbors grew to accept him over time," he is far from pleased by his condition. "When I look in the mirror, I see that I have hair on my face and no one else does. Why is it only me?"

It's like the X-Men, except this time it's real. And no fun at all. Hopefully the treatments will help the poor kid and others like him.

Source: New York Post

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Kids' Diagnosis Can Shed New Light on Parents

Amy Kuras — Tue, 11 Dec 2007 21:04:00 GMT

With the numbers of kids who carry a diagnosis of a psychiatric or developmental disorder skyrocketing, more and more parents are looking for answers when their kid seems a little out of step.

And in the process, they may uncover some new insights about themselves.

A story over the weekend in the New York Times talked about the phenomenon of parents who find, when their child is diagnosed with a disorder such as Asperger's or attention deficit disorder, that it sheds new light on their own peculiarities and struggles –and sometimes even that of their parents or grandparents.

One mom, Susan Shanfield, quoted in the article described it as saying "Well, that's us; our family is like that" when teachers began complaining that her son was slouching, not interactive and unusual in school. Turns out the boy had a neuro-lingual disorder and is now getting help.

Shanfield began looking at her own life, and talking to her father as well. Through that lens, many of the difficulties they had each faced growing up began to make sense, and they became closer as a result.

Of course, it’s risky business for a parent to self-diagnose. Often, in a sense of solidarity with their child, they may overemphasize certain of their own traits to be more in line with their child's diagnosis. On a positive note, parents can find themselves serving as translator and champion for their child, because they are able to understand them on a deep level.

This hits home for me because I am seeing plenty of my own ADD traits replicated in my own daughter. I'm glad she's growing up now, when it's understood you don't need to be a boy or especially overactive to have ADD, and when kids with all kinds of issues who once were written off as "just weird" now have a diagnosis and a way to get help. I think these parents from the article might agree.

Pediatricians Group: Screen Early and Often for Autism

Madeline Holler — Tue, 30 Oct 2007 12:24:00 GMT

There’s no cure for autism, but those with firsthand experience say early therapy can lessen the severity of this disorder. With that in mind, the American Academy of Pediatrics has come out with a strong recommendation that all children be screened twice for autism by the age of two.

For parents, this means the doctor will ask at well baby checkups whether their 4-month-old smiles at the sound of her parents’ voices, and if their 9-month-olds babble, or their 1-year-olds point to toys. They may even ask whether your young one responds to his own name.

Of course, the AAP says to temper your panic if the answer to any of these is "no." These are just signs that may hint at more focused testing.

Want to know what autism looks like? You can watch video clips of autistic kids contrasted with unaffected children’s behavior at a website, which is sponsored by Autism Speaks and First Signs. The two groups want to promote early diagnonis and treatment.

New reports also say children with suspected autism should begin treatment even before being formally diagnosed. Also, these reports warn parents about the special diets and alternative treatments endorsed by celebrities, saying there's no proof those work. (I think they’re talking to you, Mr. Travolta).

Experts say one in 150 U.S. children have some form of autism. Pediatrician awareness and early testing might make parents who know from autism feel less responsible for diagnosing others.