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Interested in learning more about dandy-walker syndrome
My name is Linda. I was Dx with DWV in June 2006 @ the age of 41. I am married and have 4 children. My oldest is in the US Army. My second is DX with MR, Bi-polar disorder, ADHD, acid reflex, stomach ulcers, allergies and high blood pressure. My third is DX with schizophrenia and my fourth boy had surgery on his eyes and with glasses he is doing okay.
Currently I am 23 wks pregnant with a little girl who has been diagnosed with Dandy Walker Variant. So far there is no hydrocephalus or other conditions, but they are monitoring us closely. I am looking for information and support from people who are dealing with the same concerns as I am and from people who have dandy walker themselves or children with dandy walker.
born with but didn’t have it diagnosed until two years ago, i guess this makes me a dandy walker survivor ! 6th generation west coast native, born & raised in california, currently living in walla walla washington
Hi, my name is Jori. My oldest son was diagnosised DW w/ hydro at brith. His one and only shunt (knock on wood) was placed at 3wks. He has had two VERY major leg operations. He struggles daily with increased muscle tension in his legs and hips. He is an awesome kid. This site sound great. I am looking forward to reading what everyone has to say.
My grandson was born with Dandy-Walker malformation on January 21, 2007. He, my daughter and son-in-law live in Delaware, and I live in California. I only get bits and pieces about his condition, but I fear he is not one of the lucky Dandy-Walker recipients. He has already had meningitis. He also has polycystic kidney disease, liver issues and high blood pressure. I also fear that he has one of the addtiional syndromes that sometime accompany Dandy-Walker. I am excited to have another online resourse!
I am the mother of 3 beautiful, full of life, little girls. At 18 weeks pregnant my 3rd daughter was diagnosed with DW. She is now 5 months and doing great. We haven’t done an MRI to finalize the diagnosis, we think that we don’t need to label her at this point. If and when she isn’t hitting milestones or so on, we will then consider it. So now I just check in to see other stories and give some kind words and support when I can.
I am 36 yrs. old mother of 3. My son is 14 yrs. old and has Dandy Walker Variant and he has recently been diagnosed with Aspergers. I am currently homeschooling him, and lovin it.
Well I am a 49 Y/O Male. untill I was about 35 I did about everything I wanted. Then I started haveing some short term memory trouble and the Dr’s said I was slightly depressed. But I was happy and my life was good except fot the pain I had had for years that everyone kept saying I was to yourn to hurt all the time. As child and I have always been clumsy and a Little thick headed, I never cared for story books however I loved the how to do books. I was told I was dyslexic in school. and had a lot of headaches. But know body did anything about it. But life was good. I had a good job and a very loving wife and 4 great kids. I even had a little lake lot and we would go fishing, camping and boating a lot in the summer. Like I said I tryed there depression meds but thay didnt help. So I droped that and thought I was getting older and just deal with it as I have always did. By the time I was 40 I was having trouble walking, my feet legs and back hurt so bad all the time and the headaches were getting worst. I went to a arthrits Dr and he said I had RA and OA well that didnt help with the movement trouble. I had changed jobs 3 time trying to find a less strinious work. I finely setteled in on being a school buss driver. working 2 hrs in the morning and 2 hrs at noon and 2 hours in the afternoon. That gave me a little time to rest between routes. Then 2 years ago my back and feet was hurting so bad the Drs said I need to slow down and do less. SO I quit and applyed for SSI and I am still waiting on them. As luck has it I happen on the the Headache and Pain Center here in KC. On march first this year, I wanted to do something about the headaches. Thats when thay did a brain MRI and found out I had DW-V and I have started chasing that. Thay found my neck 2 thru 7 disks were gone and gave me some steriod shots that help some. now there worling on my lumbar area. Thay said my feet are next. The pain has backed off some and I am starting to move around a little more.
I am co-director of the Dandy-Walker Research study at the Unversity of Chicago. If you are interested in joining our study, please email me directly kmillen@genetics.uchicago.edu
Stay at home mom with 2 kiks with disabilities. one with dandy walker, hydro, siezures.
I am 31 wks pregnant with Kyle who was diagnosed with ACC and Dandy-walker variant. I am not sure what all of this means and would like to make sure Kyle has every opportunity to flourish. I also have a 22month old, Cody who has no neurological issues. I would like to network with other parents as far as what is working and what isn’t working. I would also like to have a support system and lend support as well.
Hi, my name is Karen. My daughter is 7 1/2 months pregnant with her 2nd son, Kyle. He has been diagnosed dandy-walker variant and C-ACC. I want to learn as much as I can so I can support her and be there for her when she needs me. I would love to connect with other grandparents also.
I am the mother of a wonderful 3 year old boy with DWV
i want to learn more about children with this condition
I’m the mother of a 4 year old with Dandy-Walker malformation, partial agenesis of the corpus colusum and hydrocephalus. Patricia has had 17 surgeries and will continue to have more mainly due the her shunt. She is in regular day care and doing great!
I’m Marie Jaycel C. Ricarto, my daughter has a dandy walker malformation. i’m interested with this group because I want to know more information about this dwm.
I am a SAHM to two wonderful kids. my son is 3. and my daughter is 6 months old and has DWV. She is doing wonderful and is testing at the 7-8 month range.
I’m a high school student with Dandy-Walker Syndrome and hydrocephalus.