Dandy Update: You Can Help

Tomorrow morning Hannah has an appointment with a pediatric psychologist...or is it psychiatrist? Whichever can prescribe medication. I have no intention of medicating Hannah at this point, but want my foot in the door, so to speak, before the door actually needs opened. We had to wait four months to see this particular doctor, so waiting until the need for medication was obvious wasn't an option.

When Hannah was diagnosed with Dandy-Walker we were told that 1 in 25,000 children were born with a Dandy-Walker variant. Now, partially due to heightened awareness, some claim that 1 in 5,000 children are born with Dandy-Walker. In my personal circle of Dandy-Walker acquaintances (through other blogs, the Dandy-Walker yahoogroup and the Dandy Walker Alliance) I'm beginning to realize that Hannah's autistic-like behavior is more common than I realized.

Autism has received much well-deserved attention recently. As a result, more autistic children are receiving the treatment they need to live their best possible lives. That attention is causing an internal nudge, a growing desire to see Hannah and other Dandy Kids like her receive the attention and treatment they need without every Dandy-Walker parent feeling like he or she needs to "reinvent the wheel" (my, aren't I full of cliche's tonight?)

I look forward to the day when I'm pointed to a pediatric neuropsychologist by my pediatrician rather than by a member of an online community. Great will be the day when the treatment for Dandy-Walker enters the twenty-first century. As it is now, doctors treat it as they did when they discovered it over fifty years ago: by surgically implanting a shunt to drain the fluid buildup on the brain, then treat the subsequent symptoms. Obviously, that's for the Dandy-Walker children with hydrocephalus, of whom Hannah is not one. The emotional issues that arise from a brain malformation near the emotional center of the brain have no specific diagnoses or treatment. Sensory Processing Disorder? Autism? Again, poor parenting? She's my little sweet onion, each layer creating it's own river of tears. Some are tears of sadness. But others are tears of hilarity, accompanied by a growing need for Depends.

The children who receive treatment are the ones who were not aborted at the suggestion of their parents' doctors, a situation that happens more often than I realized. Would those babies be aborted if the parents had knowledge and hope? How many more Hannahs could there be? She's a challenge for certain, but no more of a challenge than some children without congenital brain defects whom I have met.

If you have a moment, check out the Dandy Walker Alliance website at http://www.dandy-walker.org/ . You'll find all kinds of information about Dandy-Walker. More importantly you'll see a section titled "What Can You Do" in the middle of the first column of the home page. A three-minute phone call to your congressman could encourage him or her to cosponsor House Congressional Resolution 163...which would bring Hannah--and other Dandy Kids like her--one step closer to receiving the correct treatment that they deserve.

Thanks everyone! Have a wonderFebruaryful week!