We met with the Pediatric Neurologist today, Dr. Hector James, at the UF Pediatric
Neurology Center in Baptist Hospital and he shared some good news and some so-
so news. Ryleigh does have Dandy Walker but only the
Variant form not syndrome, if she didn't have the heart condition it would have
been of medical insignificance, but because the brain feeds from other organs -
her heart condition had an effect on the development of the brain. So what does
this mean? Her condition will likely
affect her cognitive abilities, which could mean how she learns, retains, memorizes,
etc. but there is no way to determine until she is 5 or so to see how she performs
in tasks at school and home. Her degree
of cognitive disability, which could be undetectable, very mild, significant, or
severe (if severe we will know sooner as it will affect fine motor skills as
well. So really, this is good news because she won't need brain surgery – there
is no cure for Dandy Walker Syndrome or Variant, except therapy to improve the disability.
Her brain cyst won't ever go away or shrink anymore, but her doctor thinks her
condition will be mild whatever that may be.
We have begun testing our 5 ½ year old as well as he has started to display
signs of cognitive delays, he started writing words backwards and upside down.
He begins his testing May 24th, oh and that is the other thing, all testing
for cognitive disabilities of the brain are non invasive.
Be well!
