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Name: Angela City: Kentucky Sent: 28/02 2005 11:47 PM I was just researching some information on DWS. My husband's cousin and his wife just had a baby this morning who was diagnosed about a month ago with DWS. Thank you for being willing to put your private life out in the open. I enjoyed looking at the pictures of your son. He is a beautiful boy...both of them are! Name: City: Mitchell, IN 47446 Sent: 16/02 2005 03:46 AM Thanks for your informative site. Name: City: Mitchell, IN 47446 Sent: 16/02 2005 03:46 AM Thanks for your informative site. Name: City: Appleton, WI 54911 Sent: 01/02 2005 11:09 AM Reason being is that recently I started dating a most wonderful and completely altruistic woman. She is now 19 and in college and has told me all about the experience of growing up with a brother that has this syndrome. I want to know more about what will happen and how to be an amazing friend to her brother. I want to know what to do when I talk to her brother and get to know him. I am very conscientious of doing or saying something that may upset him or do any physical, emotional, or mental damage. I want to know how to be a great boyfriend and an even better friend to her brother without letting this disease handicap the relationship that I would like to have with her brother. I love people and I have met him and see how special he really is. At times I do wish that I were like him because of how happy he always seems and I do not want to change that but I do want to comfortably talk to him and get to know him. Name: City: Lake Odessa Sent: 13/01 2005 03:08 PM I have a 4 year old nephew who was diagnosed w/ DWS at about the age of 2. He is developmentally delayed cognitively but has learned to walk, feed himself and is currently working on walking up steps. He seems to be progressing in many areas. He is a non-speaker at this time but is beginning to understand commands and follow them very well. What are the chances that he may regress as he becomes older? He is attending school in a "special" class setting with good people. However, the district is hedging on getting him a one on one aide to help him out. Is there anyone that can help with the following:(1) Legal advice on pushing the district for help. (2)Evidence supporting the fact that students with this disease can make strides with increased attention. Any advice or help would be great. Sent: 13/01 2005 02:55 PM Name: Sent: 13/01 2005 02:55 PM Name: City: Indpls, In Sent: 05/01 2005 10:14 AM Thanks for the information, It's been 11 years since our son Diarr was born with Dandy Walker. He had a Shunt put in shortly after birth by Dr. Turner and we worked with the therapist to increase his motor skills. Currently the shunt has performed it's job and Diarr is a Honor Roll student who performs in various activities like most kids his age, He loves to bowl, skateboard, and of course play video games. We are thankful that we decided to bring this child into the world back in 1993. He has not had any problems with his shunt, but his eyes bother him at times. I really appreciate the fact that someone has taken the time to research and provide this very very important information. Name: City: Boulder Creek, CA Sent: 01/12 2004 12:26 AM Thanks for the info. I am a special ed.teacher with a new student who has Dandy-Walker and I wanted to know more about it. Name: City: pulaski tennessee Sent: 14/11 2004 10:50 PM MY SON WHO HAS DWV JUST TURNED 18, I AM SO PROUD OF HIM. NO HE DOES NOT WALK OR TALK, HAS THE MENTALITY OF A 5 YEAR OLD, BUT HE IS THE HAPPIEST PERSON YOU WILL EVER MEET. HE IS ALWAYS SMILING, HE MAKES OTHERS SMILE. IT WAS A LONG HARD ROAD, BUT WE MADE IT THIS FAR. HE NEVER HAD TO HAVE A SHUNT. HIS SEIZURES ARE CONTROLLED BY MEDICATION. HE IS THE LIGHT OF MY LIFE. TAKE HEART ALL OF YOU PARENTS, THERE IS A LIGHT AT THE END OF THE TUNNEL, IT DOES GET EASIER AS THEY GET OLDER, JUST LOVE THEM. GOD BLESS YOU ALL. IF I CAN HELP IN ANY WAY, JUST LET ME KNOW Name: Sent: 06/11 2004 01:28 AM MY NEICE JUST HAD TWIN BOYS. ONE OF THE BOYS HAS BEEN DIAGNOSED WITH DANDY WALKER ANY INFORMATION ANYONE CAN GIVE TO ME WOULD BE GREATLY APPRECIATED Name: City: Clarksville, Ohio Sent: 04/11 2004 07:12 PM I am doing a senior project on Dandy Walter Syndrome and I was just wondering if anyone could send me some information like pamplets or things like this if you can then e-mail me at hotchick26769@yahoo.com and I will e-mail you back with my school address. I apprechiate any help that I can get and thanks for reading this:) Name: City: Ontario, Canada Sent: 02/11 2004 10:35 PM Hello I am 24 weeks pregant with a girl, and just found out last week, she has Dandy Walker, not much information has been given to me , for they say they need to run more test to see how severe, it can be, all they say is she has missing nerve tissue on the brain, can anyone help me here Name: City: Rockford, Illinois Sent: 02/11 2004 01:16 AM Informational website. My best friends 17 year old sister found out that her unborn son (who is due any day now) has dws we are worried because we have never heard of this if anyone has any info or suggestions please e-mail me thank you. Name: City: Prescott, Ontario Canada Sent: 25/09 2004 07:41 AM Hi: My name is Cindy I have a 2 year old Son Ethan well he will be turning 3 come Dec/4/04.The doctors found what they thought was a cyst at the back of Ethans head when I went for my last ultra sound. He had an MRI at 3 months old to find out what it was. After that they told us it was Dandy-Walker Syndrome. They booked him at 6 months for another MRI because they thought the front part of his head was not growing at the rate it should be for that age. Turned out that the MRI showed it did. The doctor was checking his eyes and he could follow the book everywhere it went. Then they checked his hearing when the Doctor would call his name when Ethan was not looking Ethan would respond quick. All the doctor said after that was he was not going to do any more MRI's because he honestly does not see anything wrong all the fluids are going where they should be which he said is a good sign. He did say that Ethan is prone to seizeurers and not to worry about it because he may have them when he's 8 or he may never have them or could get it later on in life. He said take him home and enjoy him with tears of happiness in his eyes. Right now at the age of 2 but so close to 3 his hand and eye corrdination are dead on. And he has no shunt. I was just wondering though can he be doing as well as he is and then can things start to worsen and what as a parent other then seizures should I be watching out for if any? If someone knows I would be really interestd in an E-mail to texcinbaby@yahoo.com Name: City: Ft. Wayne, IN Sent: 24/09 2004 08:13 AM about infant "Kira" Name: Sent: 23/09 2004 11:04 PM Please send me the website address Thanks Gerry Name: City: Byhalia Ms Sent: 19/09 2004 03:29 AM Hi my name is Richard i have a 7 month old daughter who has dandy walker,hydr, and eplipsey. She has me wrapped around everyone of her little fingers. She started cooing and making noises at about 2 and a half months about 4 months she started holding up her head a little now she can lay on her belly and hold her head up and look around very well. She is trying her best to crawl but just cant get the motions right. She loves to "talk" so far she only had to have one revision on her shunt she is scheduled to have eye surgery in about a month to correct her lazy eye and on her medication she hasn't had a seizure in over 5 months. If any one has a child with DW and can give me some info on things to start helping her with i would really appreciate it my e-mail is therogersrad@aol.com Name: City: Seymour IN Sent: 14/09 2004 07:37 PM I am 27 years old and was just diagnosed with Dandy Walker Variant with the posterior fossa being effected as well. ALso hydrocephalus. Weird thing is I didn't show a single sign until I had a bad accident at work. Then about 2 weeks later I started having Migraines and Dizzy spells. I go to see the neurologist tomorrow to see about the shunt being placed in and I am scared. What happened? How did I all of a sudden have these symptons after a nasty accident with head trauma yet everything I have read says it is a congenital defect. If someone could write me and give me some insight I would very much appreciate it. Thanks Name: City: Houston,Tx Sent: 09/09 2004 02:25 PM Hi,I am 16 and I was diagnosed with dandy walker syndrome since I was 6 months old.I take tap,ballet, tennis,and swimming.My mom has been homeschooling me since I was in 6th grade and I am graduating next year!!I have headaches if I don't wear my contacts, and my right eye hurts.I have had 4 eye surgeries to correct the muscles.Above all I am doing great! Number of entries: 337 [ Leave the guestbook ] |
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