Hi,

I’m a mother to Miles, 2 years old, diagnosed with Dandy Walker Variant.  Mobility is limited to army crawling, and speech contains a few sounds (no words yet).  We have been doing PT/OT/visual/speech therapies for about one year now.  Last week, we took him to San Rafael, CA for a week long intensive lessons at the Anat Baniel Center.   This is unlike any other therapies I’ve done before and really focuses on learning through movement.  I’m wondering if any other parents or practitioners have experienced this.  I can only say that Miles has shown small, yet profound, changes.  While he is not walking and talking after one week, he is experiencing what his body feels and capable of doing.  And, what a gift that is.

Michelle

THREE years ago, today, my Dtr & Husband got the news that their little baby boy-Dylan-would be born with a very rare Brain Malfomation-Dandy Walker Malformation. The news was horrifying. Today-Dylan is 2 1/2 and an awesome miracle, a true blessing from God. NOT at all what we initially were led to believe. He’s walking, talking (up a st…orm), feeds self-all in all a very typical 2 yr old. It’s been a HUGE challenge all the way, but OH WHAT A GIFT!! To all DW parents & kids-never ever underestimate the abilities of these children-they are amazing!! AND to “Dandy Walker.org”-THANKS FOR ALL YOU STORIES AND SUPPORT!! GOOD LUCK TO YOU ALL, AND GOD BLESS!!

Hi All.

My daughter, Jayme, with DW is almost 3.5 years old and still not walking.  This has been quite a hardship on my body (having to carry and lift a 38lb kiddo).  She is getting early education services in our school district and her teacher recently recommended that I look into getting a handicapped license plate for my car.  Honestly it never occured to me to do that.  I still don’t have the mindset that she is handicapped, I guess.  Anyhow, after looking into I found out that Jayme more than qualifies, as does any child over a year and a half that isn’t walking yet.  The good news is it was so easy to get.  I just went online to the department of motor vehicles in the county that I live in, downloaded the form, brought it to my pediatrician to sign, and went to the dmv to get it.  It’s good for three years!   The bad news is that I hadn’t even thought of doing it earlier!  So any of you moms out there with DW kids that are physically delayed go get yours…your back will thank you!!

Dears ,

I’m married to a beautiful wife and she is pregnant for 8
months now. Doctors told us that the child has Dandy Walker malformation and it
may be sever .

I want to know answers of some questions like: what are
chances that child will die? And if he lived , then will he be having a normal
life? I can share numbers I got from doctors and the ultrasound rays that my
wife made.

Actually , the child is about to be born and I really want some one tell me the options and explain the numbers i got from US rays . please help me!

J

Best regards,

Mahmoud Elsayed

I was diagnosed with Dandy-Walker Syndrome and hydrocephalus 5-1/2 years ago at the ripe old age of 37.  I had no symptoms, ever, even growing up.  Looking back the only real “symptom” I ever had was an overly large head.  My grandmother used to have sew zippers into the shoulder-seam of my sweaters to get them over my head!  But, as there were no other developmental issues I went undiagnosed.  I was tossed off my horse 5 years ago and since I couldn’t remember my horse’s name, or the fact that I was pregnant, we decided to go to ER and get checked out.  The ER doctor calmly handed me my xrays and a phone number and suggested I make a follow up consult with a neurosurgeon.  The consultation was uneventful.  Put me through the paces; stand up, sit down, touch your nose, etc.  Diagnosis made.  As I’d lived this way all my life and was not adversly affected I was not to worry.  So I didn’t.

Three years later the headache started.  The “single-blade knife-stabbing constant 6 to 9 on the pain scale” headache.  For the most part I had completely forgotten about my head and the Dandy Walker.  And really, who pays much attention to a headache?  Well, after awhile, and many bottles of over-the-counter pain medications later, I decided it was time to call my primary care physician.  She ordered an xray and when she saw the result, she ordered me to another hospital for and emergency MRI and consult for possible shunt.

MRI completed.  Returned to hospital the next day to meet with nerosurgeon regarding the shunt.  She already review my films and reported that no shunt had ever been installed in any human over the age of 10, let alone a 40 year old!  She didn’t think we should start now!  We were going to have to research a plan B for the headache.  Her one comment to me upon my leaving sure stuck with me however.  She said that when she was reviewing films in preparation for our consultation she was expecting a severly mentally retarded patient to be rolled into her office!  I must have some scarey xrays!

So my current official diagnosis is  Occipital Neuraligia  (fancy-speak for chronic headache) caused by a Dandy Walker cycst.  Oh, yeah, and don’t forget the hydrocephalus.

So, we’re on to Plan B for fighting the headache.  Surgery is not an option as the cyst already has blood vessels that go through it and connect to the brain.  Removing it would cause too much damage to the brain.  At the moment my option is drugs.  It’s been 3 years and we’re on drug number 3.  I really like the current one, Topamax (drug #2 was Tramadol, don’t remember #1).  Some odd but, livable side affects, the best one being weight loss!  The only downside is that my body seems to develop an immunity to it over time.  We’ve doubled the dosage several months ago.  The drug stopped working about a week ago.  I’ve scheduled an emergency appointment for later this week.  I don’t know if we’ll double again or switch to a whole new drug.

If, anybody reading this dissertation (brave soul!) has any similar experience and could possibly give some insights as to what drugs have worked or not and save me the headache (literally!) I would greatly appreciate any feedback.

Thank you for your feedback.

Big Head Tammy!

I was 33 weeks pregnant when our daughter was diagnosed with Dandy Walker Malformation at a University hospital. Five doctors walked in the room and told us their grim predictions for our unborn daughter. They spoke of mental retardation, severe developmental delays and their suspicion that she had Downs Syndrome (she doesn’t). I was amazed when 5 days later she was perfect in my arms in the NICU. She received a VP shunt 6 weeks after her birth involving 2 days on the ventilater. The neurosurgeon when asked about her future simply stated “I don’t have a crystal ball”. Not reassuring for an anxious mother. Early Intervention was involved in her care from about 2 months old. She met all her milestones on time and was discharged at 11 months. She is now 13 months old. She doesn’t walk, but she cruises around holding onto the couch and pushes her baby in the stroller. She has a 15 word or so vocabulary. No one has ever guessed that anything was out of the ordinary with her and most are shocked when I mention her diagnosis. She is a far cry from the child those 5 doctors described a year ago. At her last appt the CT showed that her ventricles had collapsed down to normal size and the cyst has shrunk in relation to the rest of her brain. These are things that the doctor never expected to happen. I wanted to post this to give hope to those who are newly diagnosed. Things really can turn out good. Our daughter is the result of a powerful God and lots of prayer.

I am new to this website. My husband was just recently diagnoised with Dandy Walker syndrome. I am concerned because he is having a hard time keeping a job and do not know if it is from this or not. The doctors have not done anything for him. Any suggestions or help would be great

If theres anyone on here who is able to help me understand and gain more knowledge on this topic please help me.

realizing that that second hand smoke is dangerous for everyone can i find an article anywhere somewhere any where that says that smoking and dandy walker should not be accepted father with visitation rights feels smoking is fine and does not need to do anything with her theraputically