1 yr old diagnosed with Dandy Walker Variant

Reeti - posted on 06/23/2013 ( 1 mom has responded )

5

0

0

My LO has been diagnosed Dandy Walker variant though an MRI Report that was done yesterday. He recently turned 1 yr old but we observed development delays and he was referred a few tests. Other tests like CPK, Vitamin D3, T3 T4 TSH etc. were normal and we were confident that MRI would also be fine and there won't be any issue but sadly it didn't happen. This is what is highlighted in the MRI Report:

"There is s/o prominent CSF space in bilateral frontal and temporal region".

There is e/o mild inferior vermis hypoplasia with open communication of prominent 4th ventricle with the cisterna magna."

I'm thinking to have the MRI re-done from different Hospital but would like to know the experiences related to Dandy Walker Variant. There is a lot of stuff available on web and made my heart cry. I'd appreciate your response and experiences here.

MOST HELPFUL POSTS

Dawn - posted on 07/14/2013

3

0

0

Hi,

I'm not a mom yet, and I actually just joined because I saw your post. I do know something about Dandy-Walker Variant. I have it myself. I did not get so lucky as your son did to find out early. Usually it is found at birth, or around one to two. I found out at 21 years old, I am 23 now. It is not a death sentence so do not let anyone tell you that. In fact, it is very possible that your son could compensate for the syndrome. In fact, Variant is the mildest form of the problem. He should not need to be shunted unless he has hydrocephalus or increased cerebral spinal fluid pressure, which is most commonly when they would shunt him or at least drain it. He might have some developmental issues, I did as a kid, but like my neurologist said, somehow over the years, I was able to compensate for my short comings and live a mostly normal life * I have other unrelated health issues though, mind you*. My most noticeable issue is that I do not have good coordination nor balance, however, physical therapy can help with that. There are many things that people with Dandy Walker syndrome can have, in any form, but all are treatable, and you could have all the issues, or a few. My suggestions if to keep a good relationship with your son's neurologist and rest of the care team, and if you ever feel uncertain, seek multiple opinions. Take care.

1 Comment

View replies by

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms