Discussions By Condition: Brain conditions

dandy walker

Posted In: Brain conditions 23 Replies
  • Posted By: Anonymous
  • July 26, 2006
  • 10:53 AM

hi my daughter is pregnant and has been told her baby has dandy walker varriant, can anyone help with imformation on the syndrome as i havent found the internet very helpful, we really need some personal experience of the syndrome as she has deciced to have the baby we need to know what we will have to cope with please any information will be of help positive or not we want to know everything. thank you:confused:

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  • dear mabelI posted something the other day on the thread below yours. \you should read that....I want to add to that, our baby has the variant and at present is a healthy kicking and crying and smiling baby. The most important thing with her condition is that the fluid that has accumulated in her cisterna magna, is in fact flowing, which means no build up.You will find plenty of very moving and sad cases of DWS on the net. But just focus on your baby. Remember that most of the statistics on DWS outcomes and mortality are put together by Neurologists who are seeing the worst cases.The scope of outcomes for babies with the variant is huge.Although our baby has an undeveloped vermis and small cerebellum, the neurologists are confident that she will develop her motor function through other channels in her brain.keep learning but keep to the positive.
    Anonymous 42789 Replies Flag this Response
  • Hi Richard, thank you for your reply, I have read your previous thread and am very pleased that your baby is doing well.My daughter has decided to only have Ultra Sound Scans so we won't know if there are any more problems till our grandson is born.I have to agree that a lot of the informatin on the net is very negative and it was nice to read something positive for a change.Thank you again Richard and i wish you and your wife and more importantly your baby the very best of health and happiness for the future
    Anonymous 42789 Replies Flag this Response
  • My grandaughter has Dandy walker and she is 2 yrs old. Destiny is very limited on what she does but she has come along way too. It would seem so funny if she was what we all precieve to be as normal. She is very special and we love her just like she is and we appreciate everything that she does. She is not sitting alone yet but is trying very hard. Every day is a cherished one. There is verious forms of dandy walker and destiny has a severe form of this. God has blessed us more than we deserve with this little angel. If you have any questions please e-mail me. Its hard to find any people who have this in common. vikki:) :)
    Anonymous 42789 Replies
    • August 18, 2006
    • 02:33 AM
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  • Mabel, My son was born with Dandy Walker Variant, he is now 9 years old and doing well. There have been many challenges along the way but each year gets better. When my son was born his neurologist told me he may never do alot of things, like walk, but I didn't except that. I worked with him helping him to reach each milestone and he did. He was also born with a congenital ptosos of left eye, surgically corrected, a torticollis, some facial and body asymmetry, and has had vision problems. He developed hydocephalus at 5 months and has a VP Shunt. He also has had growth problems since utero. At 5 years old he was diagnosed with ADHD. After years of problems with attention, implusivity and hyperactivity, with medication correcting some things but also having intolerable side effects I brought him to see a doctor who also practices natural pathic medicine and have had alot of success with his treatments. He is almost to the point were you would never know he was born with a brain malformation. He is also seeing a chiropractic neurologist for the last year and if I had know about it years ago I would have had him seeing one since birth. Have faith, pray, never give up, and tell your daughter not to take just one doctors opinion, if I did my son would not be where he is today!! Good Luck!!
    Debbie D. 1 Replies
    • November 15, 2006
    • 01:50 PM
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  • My 3 year old son has Dandy Walker Variant. He is a wonderful sweet person who brings joy to everyone who knows him. He has a joyful and exciting view of life and the world around him. He is the love of both of his grandmothers. Every child that enters the world is different and brings a special gift with them. Life has challenges for everyone. Your grandchild may have more than the average child but challenges are what enhance our life experiences. Dandy Walker has a huge range of outcomes of issues from unnoticeable to severe. There is no way of really telling until the child develops. I highly recommend immediate therapy at birth. My son began developmental therapy at two weeks old. His neurologist says it has dramatically improved his issues and is impressed with his development. If you did not know my son you would not know he was different than most boys. The neurologist told me at birth he may never sit up or walk or talk. I am a believer in therapy even when it seems months go by without improvement.Good luck to your grandchild:D
    Angie D. 1 Replies
    • November 15, 2006
    • 08:43 PM
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  • Thank You To Everyone Who Posted Replys To My Thread It Was Very Welcome And Gave Us A Lot Of Help, Sadly My Grandson Jamie Was Stillborn On The 31st October 2006 I And My Daughter Wish You All The Very Best Of Health And Happiness For The Future. Thank You All Again
    Anonymous 42789 Replies
    • January 4, 2007
    • 02:09 PM
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  • Hello, I am about 19 weeks pregnant, and my dr's see a 5mm cyst in the babys posterior fossa, my perinatologist told me that is is around the cerebellum, and she thinks its Dandy Walker Syndrome, I am scared, she told me that the baby has no other abnormal findings in the brain or the heart. Just wanted to know if anyone else can give me a little more information about what to expect, or anything....I am lost!
    Anonymous 42789 Replies Flag this Response
  • Hello, I am about 19 weeks pregnant, and my dr's see a 5mm cyst in the babys posterior fossa, my perinatologist told me that is is around the cerebellum, and she thinks its Dandy Walker Syndrome, I am scared, she told me that the baby has no other abnormal findings in the brain or the heart. Just wanted to know if anyone else can give me a little more information about what to expect, or anything....I am lost!hi, I am 27 and I was diagnosed with dandy walker syndrome 1 year ago. They did not have all of the technology, such as ultrasounds, available when my mother was pregnant with me, and I do not have severe symtoms, such as hydrocephalus, so they thought I was pretty norm. As a child I did not speak until I was between 4 and 5 years of age. I had minor speech problems as I got older, and was seeing a speech therapist in school. When I turned 25 I started to have horrible migraines along with dizziness and nausea, that is when I started to see doctors. they did a CAT scan and MRI on my brain and diagnosed me with a Dandy Walker Variant. I have no malformations and my family and I would have never known anything was wrong with me other than the headaches. I am on three different pain meds. but I cope. I am in college for nursing and have a 3.6 GPA, I have four children, and I babysit. I live a very normal life, so keep your head up and pray for the best. "http://en.wikipedia.org/wiki/Dandy-Walker_syndrome
    Anonymous 42789 Replies Flag this Response
  • My nephew is 19 years old. He has Dandy Walker variant which was not discovered until he was about 15. He has very few problems other than he has a small stature and is very uncoordinated. He does fight nausea and dizziness. Other than those things he is very normal teenager and is getting ready to leave our state for college. Good luck with your situation I am sure you will have a positive outcome.
    Anonymous 42789 Replies Flag this Response
  • hi my daughter is pregnant and has been told her baby has dandy walker varriant, can anyone help with imformation on the syndrome as i havent found the internet very helpful, we really need some personal experience of the syndrome as she has deciced to have the baby we need to know what we will have to cope with please any information will be of help positive or not we want to know everything. thank you:confused:i am 13 yrs old and just found out that i have it also...i nor the doctors are sure if this two things are related...but i have been falling asleep various times of the day...i mean it only takes seconds and i am out...i cant even get up without help when i am in this state...i get headaches when i am in that state...and can not participate in physical activity which heightens the chances of me falling out...other then those times i am fine...the time i am sleep can be 10 min to 12 hrs...it is never predictable
    Anonymous 42789 Replies Flag this Response
  • My son is 9 years old and we have just been told that he has Dandy Walker Syndrome but they say that it is a mild case. We still have a week of tests to determine if he is having any pressure on his brain or if the fluid build up is a cyst.Has anyone had any surgical procedure done to help? We will not know what our next step will be until the test this week are done.My son is suffering from nauseau, dizziness, and terrible headaches. It is hard to see your child in so much pain and not able to do anything to help.Thanks!
    Anonymous 42789 Replies Flag this Response
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  • :) hi my daughter is pregnant and has been told her baby has dandy walker varriant, can anyone help with imformation on the syndrome as i havent found the internet very helpful, we really need some personal experience of the syndrome as she has deciced to have the baby we need to know what we will have to cope with please any information will be of help positive or not we want to know everything. thank you:confused:Six years ago my son was diagnosed wiyh the same thing during a routine scan. what followed were months of not knowing .The many proffesionals we dealt didn't seemto have a clue. We found it very frustrating and upsetting. Its the not knowing thats worse you dont know what to prepare for. I would say carry on searching the web that is were we got most of the info that helped us through. I found the case studies were the best I got quite atached to one little girl even though i had only read about her and never met her.I think its because it gave me hope, she was a bright,preety little girl she had slight developmental delay but was happy and healthy. We went through a very stessfull pregnancy and when I went into labour I was very scared How will my baby be affected? What will he look like? Will he be healthy? Then he was here and thats al that mattered,he was mine and I loved him. For the next three months his head circumference was checkrd weekly. At three months He had a brain scan At four months we were told that whatever had been wrong had righted itself and they had made amistake ,we were stunned! Since then he has had problems with reflux, low muscle tone and has some learning problems so I dont know if it was the diagnosis before or after that was wrong but no matter what my love for him has never changed. I think what im trying to say is that there is always hope and no matter what happens you will get through it. I know just how your daughter is feeling and i send my love to you both and your little grandchild.
    leanne battye 1 Replies Flag this Response
  • mabeli am so sorry to here about your grandson.... I am 33 yrs old and i am 28wks 5 days pregnant.. Today my doctor told me that my baby's brain isn't fusing together properly.... says not to worry but it could be dandy walker variant.... they took me out of the high risk pregnancy clinic and put me back in low should i be worried? should i get an second opinion?
    Anonymous 42789 Replies
    • December 5, 2007
    • 01:08 AM
    • 0
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  • My 12 yo daughter was diagnosed with Dandy Walker Varient during a CT Scan because she had fainted. The Neurologist said a better description would be "Hypoplasia of the Cerebellum". She has routine headaches and dizziness at times. Has always had stomach issues. Otherwise she has no other outward signs. She is stuggling in 7th grade, but it may just be the year. The Neuro said the only thing we need to do is treat symptoms and get another MRI in 2 years. I'm not sure if I feel comfortable with this and I am looking into finding a 2nd opinion.
    Anonymous 42789 Replies
    • December 6, 2007
    • 02:29 PM
    • 0
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  • hello,im wondering if this is true, because i have been reading it on the internet.pregnant mothers with unborn that has dws are to have a c-section and not a normal delivery.....i just want to know if that is true and why?thank you.
    Anonymous 42789 Replies Flag this Response
  • For those of you who have just been diagnosed i searched the internet and found a link to a website which has more links on it http://www.geocities.com/Heartland/Hills/3919/dws.html
    qwertyuiop123 453 Replies Flag this Response
  • Hello! My name is Tyara and I'm 17wks pregnant. I had an ultrasound a few days ago and after it was over I was told that my baby has a cyst on its head that is consistant with Dandy Walker. I left the hospital confused but really hurt because even though I really didn't know what Dandy Walker was, I could tell it was bad news. They scheduled me for an MRI at Childrens Hospital a few weeks from now and in the mean time I've been on the internet trying to figure out what is going on. It's hard for me to wait for my next appointment to get answers to a few questions that I just wish I knew now. If anyone can help me I would really apprecaite it. Mostly I guess I would like to know if they will know how much affect this will have on my baby after I have the MRI or will it only be determined after it is born? I am definately going to have the baby. They have been trying to talk to me about an abortion but I could never consider doing that. I already have two children and I already love this one too. If anyone can help me by answering this I would greatly appreciate it.
    Anonymous 42789 Replies Flag this Response
  • http://www.thedenverchannel.com/health/16331295/detail.html http://www.thedenverchannel.com/health/15216312/detail.html http://dandykidsdocumentary.com/ I will pray for you and your baby, for now try not to worry too much, just get plenty of rest, you'll need plenty of energy to raise three kids lol. :)
    qwertyuiop123 453 Replies Flag this Response
  • I also found this link to an email support group http://groups.yahoo.com/group/dandywalker/
    qwertyuiop123 453 Replies Flag this Response
  • hi my daughter is pregnant and has been told her baby has dandy walker varriant, can anyone help with imformation on the syndrome as i havent found the internet very helpful, we really need some personal experience of the syndrome as she has deciced to have the baby we need to know what we will have to cope with please any information will be of help positive or not we want to know everything. thank you:confused:I myself am in the same position! I have been told by the Genetics dept. at North York General Hospital in Toronto that first - you need to have another ultra sound performed by a dr. who would be able to confirm this - I am waiting to have my ultra sound for this friday - i have been told that the first ultra sound is by a tech who has given their OPINION - but it is not 100% def. speak with your OB and have them recommend a local hospital/dept. for genetics and they can give you a heck of a lot more information than what is found on the internet, they advised me that most info is in medical journals, and medical texts. Good luck to you and your Daughter! Melissa
    Anonymous 42789 Replies
    • October 21, 2009
    • 11:56 PM
    • 0
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