Dandy Walker Report

I finally feel like I can truly explain what Dandy Walker means for Cameron. While there are still some unknowns that only time will tell, our appointment today was very helpful, hopeful and concerning – all at the same time.

Cameron definitely has the Dandy Walker Variant vs. Malformation. In his particular case he has a very small cerebellum and small vermis. All along we had thought the “variant” label was the better of the two to be faced with. Turns out, history would indicate that those children with the Malformation tend to fare better than those with the Variant. Bad news.

Given Cameron’s many anomalies/birth defects it is hard to say what this means for his development and the Dr wonders if there might be a syndrome out there that would tell us the cause of all this…ultimately that is not that important to me, but interesting nonetheless. They were most intrigued with the diaphragm problem as that is not very common, while the kidney and heart defects tend to be more common in children with DW. I’d venture to say that if we were just dealing with the Hydrocephalus and Dandy Walker, Cameron’s developmental prognosis might be different (a little more optimistic.)

But it’s not all bad news! Cameron is doing well in the social skills area (smiling—really ???  making eye contact and vocal) which is the best predictor for positive cognitive development. Which is good!

The area of concern is his motor skills. The Dr. mentioned that Ataxia, coordination and spasticity could all be issues Cameron will face. The Ataxia typically shows up around one year of age – and it’s described as being wobbly, trouble with coordination and I would imagine might mean walking could be difficult for him. But to be honest I need to do some more research on the Ataxia area…

Given that the MRI he reviewed was taken at 34 weeks, the brain was, and still is very immature. They recommended around 1 year of age (corrected) we have an MRI done to evaluate his brain further. Till then we should continue working with the therapists. In addition they would like some more information relative to the diaphragm and are planning to share this with a geneticist in San Fran who is working specifically on cases that involve the diaphragm. We are also going to participate in the Brain Malformation Research Study.

So it was a mixed bag of news today. There was a brief moment when the Dr was going into detail about his many concerns for severe developmental issues with Cameron that I got VERY scared, but I am trying to be optimistic based on his report on the social and cognitive correlation. He also suggested we start seeing a neurologist at Children’s that will be able to more closely monitor the developmental issues. Seizures are also possible so it would be good to have a neurologist on board now rather than later should that develop.

So there is still a waiting game, but I feel better knowing a lot more than what I did when I woke up this morning.

My brain is so overloaded with information I am anxious for the holiday weekend to begin and just forget about all of this for awhile! This has been a record week for us-- back to back days of hospital visits and we’re going to cap it off with two therapies and a trip to the pediatrician tomorrow for a check up and another dose of Synagis!
Despite some setbacks we have much to be thankful for!!
A Special thank you to those of you that have emailed and called us with your extra prayers, positive thoughts and words of enocouragment during this tyring week. It helps so much to know that people are pulling for our family and makes all of this a little easier to swallow when the days seem dark.

One last note, I ask you to remember those who are less fortunate than many of us. There are many children I see all too often at all our hospital visits that are not well, it's heartbreaking. Say an extra prayer for them.


Wishing everyone a safe, happy and healthy holiday season.
XO