Dandy-Walker Alliance http://www.dandy-walker.org/blog Hosting a forum for open dialogue about Dandy-Walker Syndrome Sat, 07 Apr 2012 21:40:12 +0000 en hourly 1 http://wordpress.org/?v=3.3.1 Sara from UK http://www.dandy-walker.org/blog/general/sara-from-uk/ http://www.dandy-walker.org/blog/general/sara-from-uk/#comments Wed, 07 Mar 2012 14:25:21 +0000 cmacmillan1 http://www.dandy-walker.org/blog/?p=39023 Hi everyone I am so sorry I’ve not been on this site in nearly two years, I’ve been busy to say the least. That’s what having a child does to you! Sara will be 2 this month. She has still not met many milestones, she doesn’t sit up, doesn’t crawl, does walk or really move in any way. She has hearing aids which have helped her incredibly. She is very vocal, although hasn’t started forming words. I’m not going to lie it has been a very tough two years. She gets physio every day to help with her stiff muscle tone. She’ll be starting at a deaf blind special needs nursery and school after the summer which I’m over the moon about. I have high hopes for her at that place. She also has numerous other problems, including epilepsy and her main one is her feeding. She’ll be getting a gastro tube fitted over the next few weeks as she has not learned how to swallow correctly. She takes her food and milk into her lungs on every gulp. This has obviously left her with numerous chest and lung issues as I write this I am sitting in AandE reception waiting for them to do a chest xray as she has been coughing continuously all night and all day, having difficulty catching her breath its so severe. Despite all her problems Sara is the happiest child I have ever met. She only learned how to smile about 3 months ago and has not stopped since. She loves bouncing up and down to music, ( she has even begun pushing up on her knees while her upper body is supported along to the beat of music) she giggles and interacts with myself and her grandparents extraordinarily well considering her vision and hearing impairments. She is an absolute joy to be around and I would not change her for the world. I honestly do not know where or who I would be without my special girl by my side.

Yes the road may be a tough and difficult one, but it is overwhelmingly beautiful a lot of the time too.

God bless all of you and your special loved ones

]]> http://www.dandy-walker.org/blog/general/sara-from-uk/feed/ 0 Disability laws with regard to sending child to private school http://www.dandy-walker.org/blog/general/dandy-walker-child-in-a-private-school/ http://www.dandy-walker.org/blog/general/dandy-walker-child-in-a-private-school/#comments Thu, 16 Feb 2012 20:37:34 +0000 mmondia http://www.dandy-walker.org/blog/?p=30052 Hi,

Has anyone placed their child in a private school with the help of the IDEA laws?  Unfortunately, though not surprisingly, the public schools in our district are overcrowded and facilities are substandard.  I know that my child will not thrive in these environment.  I am advocating to place him in a private school that will meet his needs but unsure on how IDEA laws and procedures extend to private schools, specifically on tuition reimbursements.  I’ve read materials online, but would like to know if anyone can kindly share their experience.  Thank you.

 

]]> http://www.dandy-walker.org/blog/general/dandy-walker-child-in-a-private-school/feed/ 0 Slow Progress http://www.dandy-walker.org/blog/general/slow-progress/ http://www.dandy-walker.org/blog/general/slow-progress/#comments Thu, 02 Feb 2012 18:45:00 +0000 kdkoala http://www.dandy-walker.org/blog/?p=25271 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

]]> http://www.dandy-walker.org/blog/general/slow-progress/feed/ 3 DYLAN’S TEAM- Running for Dandy-Walker Alliance http://www.dandy-walker.org/blog/general/dylans-team-running-for-dandy-walker-alliance/ http://www.dandy-walker.org/blog/general/dylans-team-running-for-dandy-walker-alliance/#comments Wed, 21 Sep 2011 02:32:29 +0000 sjlikener http://www.dandy-walker.org/blog/?p=3839 Dylan’s mom ( “Success Story”)  has set up a team to run in the Portland Half Marathon, to help bring awareness and education of Dandy-Walker Syndrome, and to help support this wonderful organization-Dandy-Walker Alliance, Inc.

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

]]> http://www.dandy-walker.org/blog/general/dylans-team-running-for-dandy-walker-alliance/feed/ 1 DWS in Serbia http://www.dandy-walker.org/blog/general/dws-in-serbia/ http://www.dandy-walker.org/blog/general/dws-in-serbia/#comments Fri, 26 Aug 2011 03:21:07 +0000 tamarablag http://www.dandy-walker.org/blog/?p=3613 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.

]]> http://www.dandy-walker.org/blog/general/dws-in-serbia/feed/ 1 New to the world of Dandy Walker http://www.dandy-walker.org/blog/general/new-to-the-world-of-dandy-walker/ http://www.dandy-walker.org/blog/general/new-to-the-world-of-dandy-walker/#comments Thu, 07 Jul 2011 17:51:35 +0000 hopelives http://www.dandy-walker.org/blog/?p=1601 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.

]]> http://www.dandy-walker.org/blog/general/new-to-the-world-of-dandy-walker/feed/ 3 Information about Dandy-Walker Syndrome http://www.dandy-walker.org/blog/general/information-about-dandy-walker-syndrome/ http://www.dandy-walker.org/blog/general/information-about-dandy-walker-syndrome/#comments Sat, 25 Jun 2011 01:59:26 +0000 Kathy http://www.dandy-walker.org/blog/?p=1369 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

]]> http://www.dandy-walker.org/blog/general/information-about-dandy-walker-syndrome/feed/ 3 Husband has dandy walker with constant headache, Mayo Clinc couldnt even help! http://www.dandy-walker.org/blog/general/husband-has-dandy-walker-with-constant-headache-mayo-clinc-couldnt-even-help/ http://www.dandy-walker.org/blog/general/husband-has-dandy-walker-with-constant-headache-mayo-clinc-couldnt-even-help/#comments Sat, 28 May 2011 19:05:23 +0000 amjeffers79 http://www.dandy-walker.org/blog/?p=1354 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

]]> http://www.dandy-walker.org/blog/general/husband-has-dandy-walker-with-constant-headache-mayo-clinc-couldnt-even-help/feed/ 4 Niece with dandy walker in ICU http://www.dandy-walker.org/blog/general/niece-with-dandy-walker-in-icu/ http://www.dandy-walker.org/blog/general/niece-with-dandy-walker-in-icu/#comments Mon, 23 May 2011 15:19:41 +0000 yuslizy http://www.dandy-walker.org/blog/?p=1349 Hi,
My sister knew that she will be having baby with dandy walker syndrome when she 6-7 months pregnant.
When she was about 6 months old(I guess, not so sure) she had tube installed inside the head to remove the additional water.
She is now 11 months old. Last 2 weeks, she had problem with the tube and causing her to unconscious condition. She is currently depend on breathing support as she unable to breath without support and still unconscious. The doctor suggest my sister that my niece have to go another operation to make a hole near the throat. I need expert/experienced opinion here, what is the chances that my niece have? Is this the best option left with minimal impact in order to survive?

]]> http://www.dandy-walker.org/blog/general/niece-with-dandy-walker-in-icu/feed/ 1 Information on Dandy Walker Variant http://www.dandy-walker.org/blog/general/information-on-dandy-walker-variant/ http://www.dandy-walker.org/blog/general/information-on-dandy-walker-variant/#comments Sat, 07 May 2011 00:09:22 +0000 Barbara http://www.dandy-walker.org/blog/?p=1331 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.

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