dandy walker syndrom

Paige - posted on 10/03/2014 ( 16 moms have responded )

16

0

4

Hi! My name is Paige Spencer Im 21yrs old n I just had my first baby 7 months ago. His name is Jacoby (ja-co-bee) he was diagnosed with Dandy walker syndrom. His mri confirmed it after he was born i just need some feed back from other mothers with this similar disabilty. He also has a VP shunt so any feed back would be awesome im nervous n scared for my baby boy ...please reply anything you kno...thank you n i hope to hear from any of you :'(

MOST HELPFUL POSTS

Jessica - posted on 01/18/2015

15

0

1

Yup our first :) and he is sweet as a lamb :). Hunter had big spit up issues too! They were related to his chronic bad constipation. He is on a regular regiment of miralax and is so much better regarding both now. Routines are rough and ever changing. Don't know if that ever really changes. Hunter has AFO braces too.

Jessica - posted on 01/18/2015

15

0

1

No worries! Don't apologize... I have the same questions for you :) Hunter was just diagnosed this last November- right before his 2nd birthday. We had been doing different tests since he was 4 months old. First issues were his eyes would go up and stay up for a couple of seconds. They thought seizures. He had an eeg and MRI ( both inconclusive). Put him on seizure mess until the eye things stopped. Then spinal tap to check for TH deficiency, muscle biopsy and another MRI. Everything was clear but the second MRI showed his cerebellum a little under-developed. Other than those eye episodes, hunters symptoms were low tone. He still has trouble sitting and picking up things. He does have issues chewing because of the low tone. We make sure all of his food is tender etc. he is just starting to feed some things to himself but it is a long process. His weight has been right in the 7th percentile- so kind of low for his age. But the pediatrician doesn't mind because he is browning at the right rate.

Now tell me about Jacoby...

16 Comments

View replies by

Jessica - posted on 01/19/2015

15

0

1

Absolutely! Also- I like the Dandy walker alliance page on there and there are more parents who can help too :)

Paige - posted on 01/18/2015

16

0

4

But jacoby is the most happiest n loving baby n so adorable i believe he will be okay but its very scarey...we found out bout the dw before jacoby was born

Paige - posted on 01/18/2015

16

0

4

Oh my our sitution is so similar...jacoby will be 1yr in march he cant crawl or sit by himself...he throws up alot he is getting fitted for braces fer his legs on the 26th...he can lift his head on his stomach never cud still cant...he throws up alot n is in the 0 percentile fer his weight...like u said its a long process he does outpatient pt n ot n does it threw home services he is diffrent everyday he will not get on a routine its almost impossible...im so glad i found u on here...this is my first child how bout you?

Paige - posted on 01/17/2015

16

0

4

How old is ur lil man? How old was he when u found out? Did he have really high muscle tone as a baby?...does he have trouble eating or gainging waeight? Im srry i have so many questions lol

Paige - posted on 01/17/2015

16

0

4

Thank you Jessica!! Mynlil man already has a vp shunt idk can i ask u a few questions bout ur lil guy? That i been dyin for some feedback

Jessica - posted on 01/17/2015

15

0

1

Hi- my lil guy was diagnosed with dwv in Nov after many tests prompted by his Developmental delays. We are having a consult soon to see if he needs a shunt. You are not alone- it is scared but I'm happy to report that my lo is doing ok. Has lots of therapy and will be going to a special needs school next year but is the happiest kid I know! Nervous about the shunt too... Feel free to reach out anytime!

Paige - posted on 10/03/2014

16

0

4

Yea i have im trying to find mothers that have kids with same disabilty for sum imput...but thank you for ur concern

Chet - posted on 10/03/2014

2,093

0

587

This is a pretty rare condition. Have you looked at any sites specific to Dandy Walker?

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