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Name: City: Hartford Sent: 04/02 11:53 PM Hello, I have a 13 year old daughter who is right now being treated for her DWS. I was told of her diagnoses when she was 5 months old. She had only 2 shunt revisions in 12 years. She is now admitted to the Children hospital because of pain on the side of her shunt. Her doctor decided to let the tude of her shunt out of her stomach to test the fuild for any problems. So my daughter has to lay on her hospital bed for 5 days. If everything is okay, the doctor will put the tube back in and will be sent home after a day or two. My daught is very smart and besides the revisions, she is a perfectly normal and happy kid. I do worry about her when she complains about headaches, but I don't make her feel different. I have 2 other children and they do not have DWS. My daughter is the oldest of 3. I too was worry about having more children, I put my trust in God. I pray that my daughter gets to do everything she wants to do in life. I pray that she will be happy and loved as an . I put my faith in God when it comes to my daughter. And so-far-so good. Keep the faith!!!!! Name: City: malaga Sent: 04/01 08:20 PM I just recieved custody of my grandson who has dandy walker syn. I only know what I have read about this condition he is in a speacial school and falls alot, any lit. you have on this i could use to learn more about this he is 6 yrs old, Name: City: Cranbrook BC Sent: 03/28 12:45 AM I am writing this to try to get some answers for a friend of my moms. She found out recently that her unborn grandchild has Dandy Walker Syndrome. I have been searching through different websites but I am not coming up with the answers I want. I would like to know when it is normally detected? And if detected early is there a better outcome for survival? She had an ultrasound going into her second trimester and nothing was found. She started not feeling well and went back and they gave her another one and this is when she found out the grim news. Is this normally how it happens? What course of action is to be taken now? As you can see my questions are all over the place, but I don't know where to go for help and answers. Thank you! Name: City: Cleveland, MN Sent: 03/24 07:35 PM My daughter had a baby girl and she is 1 now. She has Dandy Walker's Syndrome. She is also 70% deaf in one ear and 60% in the other ear, but we have hearing aids for her. She is also partly blind, but we have glasses for her. I took her and her brother in and now we are way low on money. We could use all the help we can get. Thank you. Name: City: seattle Sent: 03/19 06:34 PM MY friends daughter just had a shunt and we are concerned about her lose of memory she seems to have no memory at all she is 8 years old any help would be great thank you Name: Sent: 03/15 01:59 AM Just wanted to share our experience for those who are worried about having other DW children, or who are worried to find out about DW before their child is born--our daughter was diagnosed with a Dandy-Walker Malformation at the age of 5. Now age 10, she continues to develop well, tho she is always a little behind kids her age. We have two sons who do not have DW. She faces many challenges, but is doing well. There's hope!! Name: City: Indonesia Sent: 03/09 07:50 AM I just been diagnose that my unborn baby has dwsyndrome. how to face this situasion/to prepare when the baby born ? Name: City: Indonesia Sent: 03/09 07:50 AM I just been diagnose that my unborn baby has dwsyndrome. how to face this situasion/to prepare when the baby born ? Name: Homepage: http://www.terra.com.br City: Rio de Janeiro, Brasil Sent: 03/02 01:56 AM Minha filha tem sete anos e é portadora da Síndrome DandY-Walker. Fisicamente ela é norma,mas possui um grande deficit cognitivo. Gostaria de trocar experiências com os pais,pois gostaria de saber como é o desenvolvimento dessas crianças. Name: City: Chicago Sent: 02/18 09:07 AM Hello, my mother is pregant with a child that has a missing piece in the cell Cerebellarm. Which is none as the vermis. I would liked to ask so i can tell my mother, because she is very frightend. I would like to ask you what will happen to the baby, and is it hard to raise him, can he talk or walk or undestand?? Please tell me all of its effects. Please write back. Sincerly, Hamzah Abdeljaber Name: Homepage: http://www.hotmail.com City: akbou/algerie Sent: 02/16 06:27 PM bonjour tout le monde, j'ai un enfant d'une année qui dit on presente la maladie de dandy walker, on m'a proposé de l'opérer, sera-t-il normal apres qu'on lui ai implanté une valve? Name: City: Virginia Beach Sent: 02/16 03:48 PM Please reply soonest Name: Homepage: http://www.wearethekey.com City: Houston Sent: 02/14 10:55 PM I would like some information on Microcephaly in Spanish. Does any one know of a parent friendly site? Name: City: Chandigarh INDIA Sent: 02/11 05:52 PM I am an anaesthesiologist and my wife is a cytopathologist. At 37 wk gestation , at a routine USG folowup ,we were told that our son might have abnormal ventricles .a subsequene mRI examination diagnosed him as dandy walker syndrome.He was born by em lscs ,sustained postnatal hypoxia. hhe had facial abnormalities ,abnormal extremities ,unilateral corneal clouding .13 pair of ribs.His MR showed absent corpus callosum apart from other features suggestive of Dws.He started having seizuresat 5wk age and was maitained on valproate and phenobarb. even with all these abnormalities he was growing as a very sweet and active child till we lost him on 20th jan 2005 at less than 6mth age. He was seizure free when we lost him. Even though i have gone through numerous articles available on net one query that troubles us is whether DWS has a recurrences . it would be kind of you if you cn forward us some details regarding this thanx Name: City: canisteo, ny Sent: 02/10 01:43 AM my daughter is a great child. she is 6 years old and she has had a total of 15 shunt revisions in the first 18 months of her life. even though she is severly delayed she is improving in all areas of develpoment, the most notable in the last 2 years. i would like to tell other parents to keep thier heads up and to continue working with your child, there are many programs and doctors out there that can help. if it wasnt for them i would not know where my daughter would be today. also i would like to say that if anyone has any questions please feel free to e-mail me. Name: City: canisteo, ny Sent: 02/10 01:41 AM my daughter is a great child. she has had a total of 15 shunt revisions in the first 18 months of her life. even though she is severly delayed she is improving in all areas of develpoment, the most notable in the last 2 years. i would like to tell other parents to keep thier heads up and to continue working with your child, there are many programs and doctors out there that can help. if it wasnt for them i would not know where my daughter would be today. Name: City: Bogotá, Colombia Sent: 02/10 01:35 AM Mi nietecito, Nicolás Santiago, nació con el síndrome Dandy Walker. Tiene seis meses. Le pusieron la válbula para la hidrocefalia. Tiene agenesia del cuerpo calloso. Labio leporino bilateral y paladar hendido. Qué experiencia han tenido ustedes con sus niños y qué puedo esperar de mi nietecito. El actualmente asiste a terapias física, ´del lenguaje y ocupacional. Parece que esto le está ayudando mucho. Espero sus comentarios. Gracias. MARIA ELSSY CARDENAS DE AGAMEZ Name: City: Herndon, Va Sent: 02/09 11:19 PM Would appreciate some info on childrens affected by Dandy Walkers syndrome. We recently have been informed during our sonogram that our son may have this syndrome. We are going to get more testing done. Perhaps hearing some others stories we can better understand this. Name: City: Bronx Sent: 02/05 07:10 AM Hi I have a 17 month old son who was born full term and is diagnosioed with the dandy Walker Syndrome. He has bad temper tantrums and is not yet walking, but has Sp, Se, Ot and PT therapists working with him, How do you cope with these difficulties and does it get easier. Name: City: Glendale, CA Sent: 01/13 03:56 PM Hi everyone....Happy New Year. This is my first time ever going online to talk about my son. He is 3 mos old and has been diagonosed with DW syndrome, hydracephalus. His problems were found right after birth because of the ambiguity of his genatalia. He did have surgery to place a shunt in to control the hydracephlus. He seems to be developing well despite being in the hospital for a month right after birth. He does have very increased muscle tone and bends his body into a backwards C. We have 2 physical therapists working with him and has a pediatrican and neurosurgeon following him. My husband and I are hoping and praying he develops well and leads a normal life. I did want some information from anyone out there how it came about that DW can happen in utero? What are the causes? We are seeing a geneticist at the end of the month and I want to be prepared. We were hoping for more kids but I think now it might not be an option. Thanks for listening and helping. I hope to make some interesting contacts and friends. Name: City: New Jersey, US Sent: 01/12 11:28 AM Hi, We have a 12 year old daughter with dw variant, and I was wondering if anyone else has come across the problem with thier child with impulsivity. Our daughter has difficulty with talking over other people's conversation or maybe pushing past someone in order to see or reach something. She does not intentionally push them but almost that she doesn't realize the impact that she is making when she does this? I am wondering if impulsivity is part of this syndrome? susan Name: ELSENA City: PETERBOROUGH ENGLAND Sent: 01/09 06:02 PM HI AMANDA, MY LITTLE BOY ALSO HAS DANDY WALKER SYNDROME.HE IS 5 AT THE END OF THE MONTH AND IS DOING QUITE WELL.PLEASE FEEL FREE TO ASK ANY QUESTIONS, I WILL HELP IF I CAN,ALL THE BEST ELSENA. Name: City: Blackpool Sent: 01/05 06:34 PM My son has Dandy walker syndrome is their any one else that i can talk to who may have a child with this condition Name: jayden Sent: 01/02 10:54 PM we hope every one has a wonderfull new year Name: jayden Sent: 01/02 10:52 PM Name: ELSENA City: PETERBOROUGH Sent: 12/30 04:19 PM MERRY CHRISTMAS TO YOU GILL AND KYLIE,WE HOPE YOU HAD AGOOD ONE .HOPE THINGS WITH YOU AND KYLIE ARE OK.BEST WISHES FOR 2005.FROM ELSENA,MICHAEL AND Family Name: gill City: england Sent: 12/24 12:19 PM Happy christmas to you all out there with problems, try and forget them and enjoy christmas day, you owe it to yourself. thinking of you all. gill. Name: Sent: 12/16 06:38 PM Thank you very much. We are very hopeful that there are no symptoms. Name: Sent: 12/16 06:37 PM Thank you very much. We are very hopeful that there are no symptoms. Name: Sent: 12/15 01:58 PM To Kristen and to Sonja, Please check out the Dandy Walker groups (there are a few) on Yahoo. The parents are very helpful and glad to share their experiences. I have a 4 mo. old baby boy with Dandy Walker and found out about it at my 20-week ultrasound. I found it very helpful and therapeutic to read the postings in those groups. My son is doing very well. Best wishes! Name: Sent: 12/15 01:57 PM To Kristen and to Sonja, Please check out the Dandy Walker groups (there are a few) on Yahoo. The parents are very helpful and glad to share their experiences. I have a 4 mo. old baby boy with Dandy Walker and found out about it at my 20-week ultrasound. I found it very helpful and therapeutic to read the postings in those groups. My son is doing very well. Best wishes! Name: Sent: 12/13 06:54 PM Hi, at 19 weeks, the level 2 sonogram showed Dandy Walker Variant. Is there anyone there I can talk to? Name: City: NJ Sent: 12/13 06:53 PM Hi, at 19 weeks, the level 2 sonogram showed Dandy Walker Variant. Is there anyone there I can talk to? Name: Sent: 12/13 01:29 PM My 16 year old daughter presented to the pediatrician with what he thought were migraine headaches. After an MRI we have been told it is Dandy-Walker. I am in Texas and would like to talk to others who have used nuerosurgeons in the Dallas area. Is their a specialist in this field somewhere? Name: City: anderson Sent: 11/25 10:50 PM what can be done for the many seizures of children with dandy walker? Sent: 11/25 01:36 PM Name: City: Tennessee Sent: 11/20 11:10 PM Hi! My name is Taunya and I have a nephew by marriage who was born a "normal" and healthy child. But at the age of 5 he began to slowly lose his motor skills right before us. He no longer walks and constantly falls and has been diagnosed with DW. Could someone please take the time out to show me where I can find out more about this illness. The mother will not talk to the family about it. Nor does she want any of our help. When we ask questions about him so that we can help, she shuns us off and says it's okay I've got it. She still tries to treat him like he's normal and wants him to be perfect. I don't know what to tell her as I don't know anything about this illness. I know this must hurt really bad because this was her first born whom she thought was fine. Her second child was born paralyzed and I guess this has become a severe blow to her. Please help me in any way u can, so that I can know what to do for her. thanks once again! (sorry for the lengthy message) Name: Ryan Homepage: http://www.plan4action.com Sent: 11/20 01:41 AM hey sweet website! just wanted to sign your gb, you should check out my site, we have a team assembled for making money together with a leading nutritional research company, we put like 300 hours into development, its worth a look. very proud www.plan4action.com Name: angela.grado@email.it Sent: 11/14 06:41 PM Sono di Palermo Italia la mia bambina e affetta dalla sindrome di dandy walker se avete ultime notizie sulla malattia gradirei saperle grazie per favore se e possibbile scritte in italiano Name: City: Doylestown, Pa Sent: 11/13 08:40 PM My son has dandy walker variant and down syndrome, I was looking for someone to talk to. My son is 4 1/2 and not walking or talking. He does use sign language and he very good at communicating. He has orthotics for his feet and we swim weekly. I might consider what Marilyn suggested about cranil sacrel therapy. Thanks for any imput. Lynne Name: Sent: 10/19 11:04 PM Dear Parents, I have an 8 year old son with DWV. I don't have time to write a long message but I just want EVERYONE to know that besides the tradtional therapies ie, speech, OT, PT - CONSIDER Cranil Sacrel Therapy with an Osterpath Dr. This therapy had remarkable results for my son. DW can not be curied, but the symptons can be minimized with this treatment. For my son - it was a mircle. Name: Sent: 10/19 11:04 PM Dear Parents, I have an 8 year old son with DWV. I don't have time to write a long message but I just want EVERYONE to know that besides the tradtional therapies ie, speech, OT, PT - CONSIDER Cranil Sacrel Therapy with an Osterpath Dr. This therapy had remarkable results for my son. DW can not be curied, but the symptons can be minimized with this treatment. For my son - it was a mircle. Name: Roseann City: Grand Blanc, Michigan (United States) Sent: 10/18 11:27 PM Allison, I am not a doctor, just a parent of a beautiful little six month old boy with Dandy Walker Variant. My advice to you is Early intervention is the best advice you can give them. Starting now, they need to have their child enrolled in any intervention available. Occupational, and Physical, and depending on his feeding ability, Speech therapy. They can not start too soon. Most counties also have Early On programs that are much more extensive. Make sure they are in touch with a good Pediatric neurosurgeon from a major hospital. I don't know where the family is from, but direct them to a major city if necessary. The inconvenience of the drive will be well worth the time. Our son has been involved in early intervention since he was two weeks old and is thriving. We owe it all to the therapist who see him on a weekly basis, his surgeon, and complete involvement from my husband, myself, our other child and god. Good luck. Name: Sent: 10/18 01:24 PM Hi I am a social worker and will be working with the family of a child with Dandy Walker syndrome -- I am hoping somebody can give me some guidance as to how best I can help this family -- the child is 6 weeks old Sent: 10/16 06:52 PM AMANDA YOU SHOULD GO ON SOME SITES FOR TRISOMY 13. THEY ARE ABIT SCARY BUT VERY IMFORMATIVE. UNFORTUNATLY OUR BABY GIRLDID NOT SURVIVE. Sent: 10/16 06:51 PM AMANDA YOU SHOULD GO ON SOME SITES FOR TRISOMY 13. THEY ARE ABIT SCARY BUT VERY IMFORMATIVE. UNFORTUNATLY OUR BABY GIRLDID NOT SURVIVE. Name: City: england Sent: 10/16 04:54 PM just found out at 21 weeks pregnant my baby has dandy walker syndrome would like to know about if there will be any complications when giving birth Name: Sent: 10/16 10:48 AM could you tell me what causes chidren to suffer learning difficulties, my son suffers with a problem with his eyes, where the muscles in both eyes are to strong and they go off up to the corners and staight up,he has also been referred for speech and language Name: Homepage: http://sheffchrist2003@aol.com City: alexandria Sent: 10/15 11:11 PM can a baby survive that has the 13th chromosone Name: Leslie City: Vancouver BC Canada Sent: 10/11 09:49 PM I just wanted to post a message of hope. Our son was diagnosed with Dandy-Walker at age five months and had surgery to put a shunt into his brain. The outcome, we were told by the doctors, was likely very grave. He is missing left, right and most of central cerebellum. We were told that mentally he would be okay but physically not. That he would walk, but never run, that he would never throw a ball. Well, we just set that aside and decided to work on helping him achieve as much as he could. An infant development nurse worked with us once a week and we put him through exercises to help him meet his milestones. He walked at 16 months. He didn't talk until nearly two but when he did he jumped straight into simple sentences. At three he was doing kinder gymnastics and in pre-school with his peers. At five he was taking piano lessons. He has never had a shunt revision. He is now 23 years old and in university and he plays recreational sports with his friends! The only deficits we have seen is he runs funny looking (he waves his arms) and that he can't manage the crawl stroke when swimming. Oh, and I do not know if its related but he has partial sight in one eye (origin is the brain) He is happy, healthy and has been for many years. Anyhow I just wanted to say that I'm glad that his doctor didn't manage to convince us to give up hope!! So don't you either!! Leslie Number of entries: 400 Thankyou [ back to main page ] |
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