Dandy-Walker Alliance

new

aschohl — Mon, 08 Mar 2010 20:58:55 +0000

Hi. My son was just diagnosed last week with DWS. He does have hydrocephalus, too, but the doctors want to wait on a shunt for now. I’ve been reading a lot about kids with this who have significant motor delays. My son has reached all of his milestones on time for motor skills – he is only a little clumsy. His main delay seems to be with language. Is it common for kids with DWS to have significant language delays and not motor delays? Also, he was recently put on trileptal for his seizures, and now he is only sleeping about 6 hours a night with no nap. He seems extra hyper. This is the third seizure medication we have tried. He was always a crazy kid, but this is way extreme. Any advice?

A message of hope and a contact person from Spain

Menly08 — Thu, 04 Mar 2010 17:32:52 +0000

I just want to be a contact for all the Spanish people living the experience of having a DW baby. Our first daughter, Mencia, was diagnosed with DW variant at the 30-week pregnancy and when we tried to get information, advice or just support in Spain we could not find any apart from her medical team at Gregorio Marañon Hospital. Feel free to contact me at lydialuis@telefonica.net

Thanks God for allow me to find this website!

I would like to thank Eric and Brian’s encouraging words to have our second baby after have lost Mencia. Aldara is today a healthy 3-month-old baby girl. I can tell you that despite being scare of the recurrence risk before be pregnat the only thing I prayed for during my pregnancy was to have my baby alive if she was also affected with DW. The worst experience in the world is to lose a child.

A grateful mum from Spain.

——————

I know we all want to have messages of hope when our babies are diagnosed with any way of DW however for those who have lost our kids could be comforting have a blog in your website where we could write our experiences and placed their photos.

Writing Book

jennifer.polo — Wed, 03 Mar 2010 20:12:22 +0000

Hi Everyone. Ever since my research on DWS I have been interested and thinking about it nonstop. For the past few months I have decided that I want to write a book on DWS. I feel that this will not only benefit people but it will make me the happiest person alive to teach people about DWS. My experience while researching DWS was not only wonderful but an experience I believe will always stay with me because it taught me so much and open a door I never want it to close. I want me book to not only teach people about DSW but also help anyone who has DWS. I also want this book to be a comfortable read and includes something for everyone.

If you have any suggestions about what you would want to see in a book about DWS or any insight you have, any information please let me know. Your suggestions and information will seriously be taken into account. If you also have any questions for me, please ask.

Advice an support

AdamJoseph1 — Wed, 03 Mar 2010 09:19:12 +0000

I’m a mother of a two year old boy he sure is a handful. I’m currently pregnant have about 4-5 weeks to go. When I was about 21 weeks pregnant I found out that my boy may have something wrong with him. My doctor suggested that I go see an ultrasound specialist for more information. Just like my doctor did the ultrasound specialist found a space between the back of the head and the spine. He said it was a bitlarger in size then normal, but was not sure what it was caused by. The ultrasound tech said the head portion was normal size. What he did find is that my baby does have a two vessel cord instead of three. The feet are fine but on the pinkie there is only two bones instead of three like there should be, and on the face he said the nose bone should be a little smaller then normal. So far since I have not done the amniocentesis test we are not 100% sure if he will have any down syndrome. The ultrasound tech said when looking at the brain that he still sees possibilities of Dandy Walker Variant. Hes suggests after baby is born that he have a cat scan and blood work done. Right now im 35 weeks and 1 day along. I have once a week dr and ultra sound visits. I had an ultrasound visit yesterday. The tech said that a month ago 02/02/2010 at my visit he weighed in at about 3 1/2lbs and now hes only weighing in at about 4 1/2lbs they would like to see him on the closer end to 5lbs. Also on his growth chart he isnt seeming to go up like they would like to see him he is actually decreasing coming down. If after not next weeks visit but the week after which would be at the two week visit. If he hasn’t been going up on his growth chart or gaining much weight. They are going to suggest to get baby out. I’m hoping everything will work out. I’m thinking as positive as I can. I’m just a bit nervous since i haven’t been around a child of my own or around a person a lot tat has any kinds of dandy walker or down syndrome. I have friends with different kinds of down syndromes they are great people and I love them just as if they were a “normal” regular non down syndrome person. I just don’t know how to react to whatever he is going to have wrong with him. If there is anyone that can help me prepare myself a little better since I have less then a month to go that would be great. Looking forward to talking with anyone that has some more information on dandy walker or down syndrome, an that can be of help about support groups an that sort of thing. Thanks so much god bless all of you Emily.

KONSTANTINOS

FANIS — Tue, 02 Mar 2010 23:14:34 +0000

To parents

I would like to tell you about my son Κonstantinos, who is 7,5 years old. He has a valve that supplies the cerebrospinal fluid (CSF) into the ventricle.
Κonstantinos was born on 2002, with inial menegocele. At the back of his head he has a cerebellum atrophy, there is a hole at the back and an aqueduct stenosis and a cyst. In the beginning we were told about having the Dandy Walker syndrome .
He had many surgery on 04.2002 and the gap was closed. But after 45 days we were forced to install a valve (shunt) on the right side of the head to supply fluid into the ventricle. But he faced problems and he had to change the valve that supplied drainage into the vein that leads to the heart on 10.08.2002.
He walked when he was 21 months old and had physiotherapy for a period of 8 months. In March 2005 he faced another problem as he gained height and we had to change the catheter position from his heart to his abdomen.
In February 2006 he faced another problem and we had to change the valve (with an other Hakim valve) and the catheter position from his abdomen to his heart .
For the time being he is well, he walks normally and started to talk. We commenced speech therapy a year ago.
In 2009 August he faced another problem and we had to change the valve and the catheter position from his abdomen to his heart but without good result (5 operations).
He had a surgery from a neurosurgeon (His name is ZOUNTSAS ).
He made fenestration of the cyst and opened the aqueduct.
It is a miracle for our family. Now Konstantinos is without valve for 45 days.

If some child have problem like our problem maby doctor can solve it.
I write the address and the email of doctor.
email: zountsas@neurogroup.gr ,Site: http://www.neurogroup.gr
Thessaloniki Greece +30 2310 390517 +30 2310 390655 (FAX)

Theofanis
Thessaloniki Greece
Email: fanisbout@yahoo.com

Dandy Walker Malformation is gone?

pequentas — Sun, 28 Feb 2010 01:14:22 +0000

I was diagnosed by multiple doctors (around 5) with having Dandy Walker’s Malformation in utero. However, when i was born my doctor said my brain appeared to be completely normal and the Dandy Walker’s Malformation was gone. I was wondering if I can develop Dandy Walker’s later in life. Also, could there be after-effects of the malformation as my brain continues to develop? I am 17 now.

Also, i have a venous malformation on my eye lid and was wondering if that is linked to DW in any way and if it can have negative side effects? I haven’t had any trouble with it so far.

Thank you

looking for answers

adinah_hatfield — Fri, 19 Feb 2010 05:57:38 +0000

My daughter is 3 years old and has had an MRI some time ago before she was 1 and was diagnosed with Dandy- Walkers Variant.I do not understand a lot about this nor do I have a support chain for this… My question is this does every person that has been diagnosed with DWV have a shunt? They say she is like a “water head baby” without the water…Has anyone ever heard of this and then my last question …How do you get around to finding out if you can have a child retested? where as I feel like she has been misdiagnosed ..thanks for all your help with these questions….

DW and Learning Disabilities

katie — Mon, 08 Feb 2010 19:52:51 +0000

My son recently turned four years old. He is in a blended preschool program with 15 “at risk” kids and 5 kids with IEP’s. At his most recent review the head teacher mentioned some concerns about possible learning disabilities. He is just mastering colors and still has a hard time with ABC’s. He has a great vocab and seems to understand almost everything. His neuro is not concerned and thinks the teachers are beinga a little alarmist. Wondering if any parents have had experiences with DW and learning disabilities and if anyone has any insight into proactive measures I can take. . .thanks katie

Apnea, dandy walker, premature birth

Meadhran — Mon, 25 Jan 2010 07:39:42 +0000

My beautiful twin daughters were born 8 days ago by emergency section at 28 weeks gestation. The girls were also troubled by twin to twin transfusion syndrome. The smaller, donor twin (Abigail), had dandy walker syndrome diagnosed at 17 weeks gestation. Both girls are having episodes of apnoea and bradycardia, although Abigail is experiencing more frequent and prolonged episodes than her sister. My wife and I have been reassured that such episodes are associated with prematurity but that Abigail’s more frequent episodes and the fact that they are not improving merits some attention. The doctor/nurses seem quite focused on “infection” as the most likely cause, which seems fair enough, but I wonder if dandy walker syndrome is associated with apnoea due to the malformation being so close in proximity to the medulla?

Breastfeeding and DW

Jennifer — Mon, 18 Jan 2010 19:10:29 +0000

Hi,
does anyone have experience of breastfeeding a DW baby, I am 30 wks
pregnant with our daughter, Louise, who has had the diagnosis confirmed
with fetal mri. She also has tricuspid atresia which means the
tricuspid valve in her heart is missing. The cardiologist is really
positive and optimistic but our OB said the baby
will probably not be able to feed. I’d love to hear anyone’s story as
feeding her myself is important to me. Is the OB just being cautious?
Thanks Jennifer