Is there any parents that has a child with Dandy Walker Syndrom?

Brandi - posted on 06/28/2012 ( 6 moms have responded )

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My son was diagnosed with Dandy Walker Variant when I was about 26 weeks pregnant..he is 3 years old now. I havent really found very many others that have even heard of this much less have a child with it. I'm just looking for anyone who may have any information or experiences with dealing with a child with dandy walker.

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Danielle - posted on 06/03/2013

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, thank the good lord, was blessed with a healthy daughter (who is now 3), but I myself have Dandy Walkwer. I would be glad to discuss anything I know about it (having walked in the shoes for almost 30 yrs now).

Sheree - posted on 09/30/2012

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hi my daughter just turned 3 ...... i was first told about Dandy walker at my 30week checkup with neonatology........ i knew something was wrong cause the tech left me all gooed up after ultrasound ........ It was confirmed after she was born by ultrasound and Mri...... Her actual diagnosis is :



posterior fossa cyst with dandy walker malformation varient

moderate pulmonary valve stenosis - heart defect

Succumdum atrial septal defect - heart defect

microcephaly - her head circumference has not changed since 9 mos old.... she remains at 44cm..... which drs told me was odd because most dandy kids have macrocephaly

coordiination disorder



she walks with feet turned in .... drs dont seem to worried about it...... im guess it helps with her balance.....



there are good days and bad days...... somedays she can get up and just go...... chats up a storm ..... then there are days taht she doesnt walk at all and crawls or just whines and moans........ somedays more clumsy too just figure thats part of cordination disorder......



any ? i can try to answer............ its all so new to us all i guess

Tasha - posted on 08/07/2012

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Hi! I am a mother of a 4 year old daughter with Dandy Walker Variant. She was born premature weighting 1.8oz. At first we thought she was just going to have to catch up since she was born at 28 weeks. As an infant I had brought her into the emergency room many times for what I thought was seizure like activity but was sent home and told to give her Tylenol to control what the Drs, said was febrile seizures due to having a high temp with an illness.until one day at the age of 2 she her first of many seizures. On the way to the hospital by ambulance she had 2 more seizures and 3 more in the ER for a total of 6 altogether. While there they ran an entire battery of tests to rule out drugs, alcohol, chemical poisoning and with an C scan they were able to determine that she had something called Dandy Walker Variant. I too had never heard of this before, but once I started doing some research, it started making sense. As a infant she was slow to gain weight and it was hard to keep it on, she was sick with colds and respiratory illnesses all the time, and suffered from Reflux, she could not sit by herself until after 1 years old, she could crawl until 11-12 months. We had a feeding therapist, Occupational Therapist, and a physical therapist come out for over 3 years to assist with the difficulties she was having .She is now 4 years old, and has Partial Complex Seizure Disorder, Reactive Airway Disease, Chronic Constipation, Severe Mixed Expressive-Receptive Language Disorder, Ataxia, Feeding Difficulties, ( choking at times, putting too much food in her mouth) plus other medical issues that we are working on one at a time.So far her cognitive development is on track but she does have difficulty with her memory. Currently she attends a Head Start Preschool program in our area and she has a Nurse that attends with her all day. She has Speech Services, PT services and OT services all to help her continue to progress. Even though everyday is a new challenge for her with the support of my Husband, Family and Friends everyday is blessing. Sometimes its hard, because you are constantly talking to Drs. and Agency's but it is so worth it. I hope this helps a little.

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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.

Jennifer - posted on 03/30/2013

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Hi. I have a son with Dandy Walker too. I posted on here last year and assumed I was the only one. I was told at my first ultrasound, which took a very long time, that my child had this. It was confirmed with an MRI after birth. Brandi, I'm learning to take everything day by day. He has great days and good days I call them. He's 2 and babbles, he should be saying mommy by spring I pray, doesn't walk unless assisted and has all therapies too. He goes to a PPEC (prescribed pediatric extended care) and they are great! His pediatrician, who is a blessing, reminds me all the time: look at where's he's come from and that he continues to progress and not regress, you are a great mommy and God made you his mommy for you are the only one who can handle and do this. So I repeat what she says to you. Also, being a recently divorced mother, my relationship with Jesus Christ is what gets me through everyday (even before being a mommy). Plus, its such a joy on mine and my child's face to hear and see him sing in church. Even though his version of singing is saying, ahh really loud..........

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