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My son is 2 1/2 years old and he has been diagnosed with dandy walker variant. He is getting physical, occupational, and speech therapy. We have a stander and he will be getting a wheelchair. He can sit for a couple of minutes, but he can’t crawl, walk, or talk. He doesn’t play with toys. I realize that progress can be slow, but I’m wondering if this all because of Dandy Walker or if he could have something else going on as well. We will be seeing a developmental pediatrician in May. Can anyone share some thoughts? Thank you, Ramona
This organization has been such a blessing to us and many parents, families, grandparents and friends of people afflicted with Dandy-Walker Syndrome. It is just so amazing to see the progress these kids are making, when initially we are told that these kids with DW wouldn’t stand a chance of having a wonderful, productive life. Well, we will prove the studies wrong, and Dylan is just one of the kids proving them wrong. October 9, 2011 in Portland OR, we are running, and we would love to have your support and prayers–it has been a long hard period of training and getting ready, but all DW kids are worth it!! Dylan, 3 years of age, started early intervention pre-school this fall, and today for the first time, he rode the bus to school. Fun for Dylan, scary for his parents! What a milestone this was, and he did wonderful. He loves school, and watch out, from now on there will be no stopping him. He may have some delays, but that will not stop him, he is amazing, as are ALL Dandy-Kids!! A friend once said to me (proud “Gamma Sanny”) ” Dylan may have Dandy-Walker Syndrome, BUT Dandy-Walker does not have him”!! That says it all—EXCEPT: DANDY-WALKER A LIFE WORTH SAVING My family had just entered the world on DWS when my 8 m old nephew was diagnosed this summer. He had the shunt implanted right away and he is in physical therapy now, we can see the progress already. There is very little info (even from the doctors) in Serbia and my sister is trying to find out as much as she can from the web. I live in the US and would like to help as much as I can as well. She has a few major concerns that she still doesn’t know much about, so I was just wondering if anyone can give us some answers from your own experiences- 1) do any of the DW kids have significant lack of attention and behavioral issues (like aggression, or similar); 2) when should one start checking the eyesight, is there any indication at an early age that the kid has eye problems?; 3) can we expect any heart, or other major organs’, issues or problems; 4) the speech issue is mentioned a lot, but how does it manifest, do the kids have trouble making the sounds, making the words or sentences? there will be so much to learn along the way and I am sure there are many different experiences, but any comments and words of wisdom from you all are welcome. thank you. At a recent ultrasound appointment it was confirmed that my child has Dandy Walker. I was wondering if anyone could suggest any specialists in the Lansing/Detroit/Ann Arbor/Flint Michigan areas. I want to be sure to get my child the best possible care. Right now all of my care is going through my perinatologist but want to be sure I have the right neurologist/neurosurgeon involved when needed. Please give me some general information about Dandy-Walker Syndrome. My son has Dandy-Walker Syndrome, also is mentally impaired and was beaten up and suffered a very traumatic brain injury – almost died. Please tell me if anyone could give me some information and how it affects their child. Thanks – Kathy My husband woke up with a headache Feb 20,2011 and still has it! he is 34 years old and they say he was born with this but he never showed symptoms untill feb,20,2011 when he woke up with the headache that has never went away!! we have been to several different hospital, neurologist & neurosergons! He was dx with Dandy Walker syndrome with varriant & hydrocephalus.After several ct scans, mri, mra, and spinal taps, we were sent to a neurogergon in Columbia MO at university hospital. He was able to get a sucessful spinal tap and saw that his pressure was 28 when its supposed to be 10-12. So he placed a VP shunt in on 4-1-2011, with no relief! If he coughs, sneezes, or laughs he almost or does black out & the pain intensives! If he bends over its puts extreme pressure on his head. We have tired all the drugs with no luck, the shunt has not helped, so we just went to Mayo Clinic in MN this past week 5-23 to 5-28 they are the best in the world & help people no other doctors can right? Wrong they cant even figure out what is causing this constant headache on his best day he is at a 4 -6 on pain scale unless he coughs,sneezes,or laughs. They did another scan called a MRV to check the ventricles since his are very big which goes with the dandy walker, they were checking for clots or blockage which they did not find anything! THey found the left side of his ventricles and arteries are different from right side thinner and some missing but its due to the way the brain formed with the dandy walker cyst. So the best in the world couldnt help my huband they are trying him on Topemax once again but this time 100mg twice daily, (which mess with his memory, consitration,taste, and speech )the next option is different drugs 2 left to try.He has been off work since feb 22,2011 and I am begining to wonder if he will ever be able to go back! So coming from someone who has been to mayo clinic the best of the best with no answers I hope and pray we find answers somewhere or one of these drugs start to work. Hope to find some help and answers A.J Hi, My daughter is 10 years old and she was diagnosis with the Dandy Walker Variant in Mar 2011. As a baby she had no problems. The only problem was just fall all the time. She has been referred to another doctor and as soon as I get the phone call she will be there. Just let each and everyone of us pray for each other and God will work it out. I believe in my heart that god can work a miracle. If any one know where I can get information about DWV please let me know. 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 My daughter is 7 years old, and when she was 2 years old she had a mri done and they diagnosed with dwv. I was worried, scared, and didnt know what to expect. Between born and 6 mos old we noticed she was delayed in sitting up and crawling so we entered the early-on program an she started receiving all her therapies, i am so grateful for the program .When she got her mri done the drs said she may not walk or talk. Well she proved the drs wrong because she is doin both and her kindergarten teacher isn’t worried about her acedemicly. I am so very proud of her. |
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