"Danddy Walker Syandrome"

Lily Grace @ Lailatul Shaqirin - posted on 01/01/2010 ( 5 moms have responded )

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Hi, she is now comin to two years and she still can't stand, sit, walk..a danddy walker syndrome..How do you raise a baby like mine..for those who havin the same with me???

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Kimberly - posted on 12/30/2015

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To mom of Lily Grace - this was posted in 2010 are you still out there. I have a beautiful little girl her name is Cheyenne she has DW she can not sit ,walk, or talk !, she is 10 years old now ,she is very small in size but she is so big in other ways ,she loves people, most of all little people (kids) you can see her just light up when they come around her. I never keep anyone way as long as they are not ill they can talk and touch her (hands) , she is funny and loves to laugh she may not talk the way we do but she get her wants and needs a cross to us just fine. the only meds she takes are Acetaminophen, Mirilax, Levalbuterol Inhalation as needed when she is sick. The reason I have come to this circle is because i would like know if all DW kids are small, if anyone has the answer please Reply Dr is talking feeding tube and i dont think it is needed, she has only been in the hospital 4 times in her life ,one of those time was when she was almost 4 I knew she was having a problem with milk but the doc's wouldn't listen she ended up in the hospital for a week all backed up if you know what i mean from then on she has not been able to eat table food she has to drink Peptide-based Nutritional drink for children, she drinks from a bottle we have tried cups but because she cannot sit up on her own it is easier with a bottle, I have been seeing the same Doctor for about 7 years , 7 years ago she talked about the feeding tube said it would be easier for me I said No! , about a year ago she brought up the feeding tube again because of Cheyenne's size, Cheyenne drinks 6 to 7 8 fl oz bottles of PediaSure a day, two bottles at a time, And she is healthy she go's to endo 2x's a year all the numbers are great . The way I feel about this is that Cheyenne is the size she is meant to be. Before all this came up again she was drinking about 5 to 6 bottles of a lower cal drink so i told the doc I would feed her more so she increased her cal intake Cheyenne put on a few pounds and then drops them it up and down all the time. the doctor wanted her to gain about 10 pounds, even with the few pounds up and down I have to feed her a bottle in the middle of the night so maybe she will gain you know because she go's to sleep she's not moving around burning it off. I don't know maybe I'm crazy but Cheyenne is a fun loving, HAPPY little girl and I am her mouth ! I just want to do what is good for her. SHE IS MY LITTLE LOVE BUG , EVERYONE THAT KNOW CHEYENNE , LOVE'S CHEYENNE THAT IS THE KINDA LIGHT SHE IS :)

Erica - posted on 11/22/2013

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It's not easy at all. But she can do these things in time. It's a lot of work and dedication. My daughter is 8 now and she has dandy walker, servere hydrocephalus, absence of corpus collusum, and deadly seizures. But I decided to work with her non stop day in day out. She does things unheard of crawls walks with her hands and feet on the ground, talks but not in full sentences but it's such a struggle because it's full time and non stop. She's still in diapers, drinks from a bottle and I have to purée her food as we'll kinda like taking care of a newborn. So I knw soooo much what your feeling but stay strong cause it can get better

Reeti - posted on 06/23/2013

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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.

[deleted account]

I didnt know what this was so I looked it up, sounds like they can mostly reverse it. Has your Dr. tried the drain option?

What is Dandy-Walker Syndrome?

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid-filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the area of the brain between the two cerebellar hemispheres (cerebellar vermis), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.

The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns.

Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system, including absence of the area made up of nerve fibers connecting the two cerebral hemispheres (corpus callosum) and malformations of the heart, face, limbs, fingers and toes.


Is there any treatment?

Treatment for individuals with Dandy-Walker Syndrome generally consists of treating the associated problems, if needed. A special tube to drain off excess fluid may be placed inside the skull. This will reduce intracranial pressure and help control swelling. Parents of children with Dandy-Walker Syndrome may benefit from genetic counseling if they intend to have more children.

Sheila - posted on 01/02/2010

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Hi Lily. What has your health professional recommended??? I personally would seek some professional advise. Sx

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