Comments for Dandy-Walker Alliance http://www.dandy-walker.org/blog Hosting a forum for open dialogue about Dandy-Walker Syndrome Wed, 10 Mar 2010 17:03:16 -0400 http://wordpress.org/?v=2.9.2 hourly 1 Comment on new by Terri http://www.dandy-walker.org/blog/general/new/comment-page-1/#comment-129 Terri Wed, 10 Mar 2010 17:03:16 +0000 http://www.dandy-walker.org/blog/general/new/#comment-129 My granddaughter has DWS and she is pretty much non verbal at the moment, she will be 3 in May. DW affects everyone a little different. In our case she is delayed in most areas, she does things, but on her own time table. She started walking at 19 months and is just now starting to say a few recognizable words. We are sure she will talk, it just may take her longer than most kids! She also has seizures and was just started on zonegran in addition to depekote to try and get them under control. Since she started on the zonegran her sleep habits have gotten out of wack too, waking up hours earlier than normal and then being irritable all day. I wonder if some seizure meds have that affect on kids. We see her neuro in a couple of weeks and its one of the things we were planning on asking him about. Is your son in speech therapy? There are all sorts of different things they can do to help him communicate. Have you tried sign language with him? We tried that but because of her motor skill delay didn't have a lot of luck. PECS is another option. It is basically a picture based communication system. You put pictures of very common items, things like a cup, a snack, a toy, and so on in a place easily accessable to your son and there is a system for teaching him that if he brings you a picture he gets the item. Once the basic concept is down you can expand the pictures to about anything. There is also many different kinds of assistive technology for communication that your speech therapist should be able to help you with. Good luck! Terri My granddaughter has DWS and she is pretty much non verbal at the moment, she will be 3 in May. DW affects everyone a little different. In our case she is delayed in most areas, she does things, but on her own time table. She started walking at 19 months and is just now starting to say a few recognizable words. We are sure she will talk, it just may take her longer than most kids! She also has seizures and was just started on zonegran in addition to depekote to try and get them under control. Since she started on the zonegran her sleep habits have gotten out of wack too, waking up hours earlier than normal and then being irritable all day. I wonder if some seizure meds have that affect on kids. We see her neuro in a couple of weeks and its one of the things we were planning on asking him about. Is your son in speech therapy? There are all sorts of different things they can do to help him communicate. Have you tried sign language with him? We tried that but because of her motor skill delay didn’t have a lot of luck. PECS is another option. It is basically a picture based communication system. You put pictures of very common items, things like a cup, a snack, a toy, and so on in a place easily accessable to your son and there is a system for teaching him that if he brings you a picture he gets the item. Once the basic concept is down you can expand the pictures to about anything. There is also many different kinds of assistive technology for communication that your speech therapist should be able to help you with. Good luck!

Terri

]]> Comment on What to do- If any body could answer by Menly08 http://www.dandy-walker.org/blog/general/what-to-do-if-any-body-could-answer/comment-page-1/#comment-128 Menly08 Thu, 04 Mar 2010 16:45:10 +0000 http://www.dandy-walker.org/blog/general/what-to-do-if-any-body-could-answer/#comment-128 Dear mum, I am so sorry for your lose. I know what you are living, I lost my first daughter, Mencia, in 2008 due to DW variant. I was so scare as you are and wrote this website for counselling. Thanks to Eric and Brian's words we decided go for a new pregnancy and I can tell you that my 3-month-old daughter is a healthy baby (although the only thing I prayed for during the pregnant period was that even if Aldara was affected by DW she could live) Go ahead with the pregnancy! Dear mum, I am so sorry for your lose. I know what you are living, I lost my first daughter, Mencia, in 2008 due to DW variant. I was so scare as you are and wrote this website for counselling. Thanks to Eric and Brian’s words we decided go for a new pregnancy and I can tell you that my 3-month-old daughter is a healthy baby (although the only thing I prayed for during the pregnant period was that even if Aldara was affected by DW she could live) Go ahead with the pregnancy!

]]> Comment on looking for answers by geena http://www.dandy-walker.org/blog/general/looking-for-answers/comment-page-1/#comment-127 geena Mon, 01 Mar 2010 06:52:32 +0000 http://www.dandy-walker.org/blog/?p=775#comment-127 My daughter was born with DW but did not need a shunt. At the age of five, we learned she had developed very high pressure in her brain because the CSF was not draining properly. We are not sure how long she had the high pressure but she began to complain of headaches so we took her for a CT scan where it was discovered. Instead of a shunt, she had a cyst fenestration and has been doing very well since then. It is now over two years and we are praying that she continues to do well. My daughter was born with DW but did not need a shunt. At the age of five, we learned she had developed very high pressure in her brain because the CSF was not draining properly. We are not sure how long she had the high pressure but she began to complain of headaches so we took her for a CT scan where it was discovered. Instead of a shunt, she had a cyst fenestration and has been doing very well since then. It is now over two years and we are praying that she continues to do well.

]]> Comment on Breastfeeding and DW by geena http://www.dandy-walker.org/blog/general/breastfeeding-and-dw/comment-page-1/#comment-126 geena Mon, 01 Mar 2010 06:46:40 +0000 http://www.dandy-walker.org/blog/general/breastfeeding-and-dw/#comment-126 My daughter was diagnosed with DW at 23 weeks and was born five weeks prematurely weighing in at 4.2 lbs. Her diagnosis was confirmed the day she was born. I nursed her for 19 months. She would have nursed longer, but I weaned her because I got pregnant. She initially had a problem latching on in the hospital, but we found that it was because she was so tiny. It was a learning curve for us both. While we did give her formula at times, she preferred nursing and never had a problem. My daughter was diagnosed with DW at 23 weeks and was born five weeks prematurely weighing in at 4.2 lbs. Her diagnosis was confirmed the day she was born. I nursed her for 19 months. She would have nursed longer, but I weaned her because I got pregnant. She initially had a problem latching on in the hospital, but we found that it was because she was so tiny. It was a learning curve for us both. While we did give her formula at times, she preferred nursing and never had a problem.

]]> Comment on DW and Learning Disabilities by steve freestone http://www.dandy-walker.org/blog/general/dw-and-learning-disabilities/comment-page-1/#comment-125 steve freestone Mon, 01 Mar 2010 03:30:24 +0000 http://www.dandy-walker.org/blog/general/dw-and-learning-disabilities/#comment-125 My son has very slow development, at 3 he has only just started clapping his hands together, but he is doing it in a meaningful way and has use of a few words (drink and good are the main ones). He goes to a special educational needs school already for a few hours a week and he really enjoys it, although due to his lack of mobility spends most of his time watching other children for stimulation if he isn't getting full one to one care at the time. My son has very slow development, at 3 he has only just started clapping his hands together, but he is doing it in a meaningful way and has use of a few words (drink and good are the main ones). He goes to a special educational needs school already for a few hours a week and he really enjoys it, although due to his lack of mobility spends most of his time watching other children for stimulation if he isn’t getting full one to one care at the time.

]]> Comment on Dandy Walker Malformation is gone? by Eric http://www.dandy-walker.org/blog/general/dandy-walker-malformation-is-gone/comment-page-1/#comment-124 Eric Sun, 28 Feb 2010 13:31:13 +0000 http://www.dandy-walker.org/blog/?p=815#comment-124 Dandy-Walker is congenital which means that if someone has it that it is present from birth. Perhaps this was a case of an incorrect diagnosis in utero (which is not uncommon) or that what they suspected was the malformation was the variant or hypoplasia of the celebellar vermis. The last two are on the DW spectrum but don't meet the clinical definition of the malformation. I've not heard of DW being linked to venous malformation. If we come across anything we will surely post it. Thanks, Eric Dandy-Walker is congenital which means that if someone has it that it is present from birth. Perhaps this was a case of an incorrect diagnosis in utero (which is not uncommon) or that what they suspected was the malformation was the variant or hypoplasia of the celebellar vermis. The last two are on the DW spectrum but don’t meet the clinical definition of the malformation.

I’ve not heard of DW being linked to venous malformation. If we come across anything we will surely post it.
Thanks,
Eric

]]> Comment on Looking for some insight or hope by jasmina http://www.dandy-walker.org/blog/general/looking-for-some-insight-or-hope/comment-page-1/#comment-123 jasmina Sun, 28 Feb 2010 07:11:38 +0000 http://www.dandy-walker.org/blog/general/looking-for-some-insight-or-hope/#comment-123 hello everyone my name is jasmina i am 21 my baby girl named sariah was diagnosed with fluid on the cerebellum what the doctors call dandy walker syndrome i need some edvice this is really hard she has had difficulty eating and she does some funny arches and i just need someone that has gone trew the sames things to help me out ? hello everyone my name is jasmina i am 21 my baby girl named sariah was diagnosed with fluid on the cerebellum what the doctors call dandy walker syndrome i need some edvice this is really hard she has had difficulty eating and she does some funny arches and i just need someone that has gone trew the sames things to help me out ?

]]> Comment on looking for answers by Maxinepink http://www.dandy-walker.org/blog/general/looking-for-answers/comment-page-1/#comment-122 Maxinepink Thu, 25 Feb 2010 19:08:04 +0000 http://www.dandy-walker.org/blog/?p=775#comment-122 Hi...My daughter is 21 months old, born with DW Malformation.. at 3 weeks old she had a shunt put in to help drain the cyst that she has..the neurosurgeon told me that Gracie's hydro is secondary to the DW. so basically when the cyst is controlled she doesn't have the hydro and vice versa..and the shunt that she has in is called a CP shunt which is inserted straight into the cyst.. anyways Gracie had 6 shunt ops to date and she is doing really well...reaching milestones for her age and to top it all off she started walking by herself yesterday...she is such a pleasure to have.. I would be very happy to help in any way i can Thanks Maxine Hi…My daughter is 21 months old, born with DW Malformation.. at 3 weeks old she had a shunt put in to help drain the cyst that she has..the neurosurgeon told me that Gracie’s hydro is secondary to the DW. so basically when the cyst is controlled she doesn’t have the hydro and vice versa..and the shunt that she has in is called a CP shunt which is inserted straight into the cyst.. anyways Gracie had 6 shunt ops to date and she is doing really well…reaching milestones for her age and to top it all off she started walking by herself yesterday…she is such a pleasure to have..

I would be very happy to help in any way i can
Thanks
Maxine

]]> Comment on looking for answers by Eric http://www.dandy-walker.org/blog/general/looking-for-answers/comment-page-1/#comment-121 Eric Mon, 22 Feb 2010 13:04:48 +0000 http://www.dandy-walker.org/blog/?p=775#comment-121 Great question. No, not everyone with DW will be shunted. Shunts are used to treat a condition called hydrocephalus. The statistics I've seen suggest that somewhere between 70% to 90% of individuals with the DW Malformation will be shunted at some point. If your daughter has has a CT or MRI your doctors will be able to advise you on whether hydrocephalus may be a concern or not. All that said, over 1 million American's have hydrocephalus, many with shunts and are doing really well. While any new diagnosis is scary hydrocephalus is treatable. I'm happy to speak with you more about our experience with DW, hydrocephalus and VP shunts if you like. Thanks, Eric 301-919-2653 Great question. No, not everyone with DW will be shunted. Shunts are used to treat a condition called hydrocephalus. The statistics I’ve seen suggest that somewhere between 70% to 90% of individuals with the DW Malformation will be shunted at some point.

If your daughter has has a CT or MRI your doctors will be able to advise you on whether hydrocephalus may be a concern or not. All that said, over 1 million American’s have hydrocephalus, many with shunts and are doing really well. While any new diagnosis is scary hydrocephalus is treatable.

I’m happy to speak with you more about our experience with DW, hydrocephalus and VP shunts if you like.
Thanks,
Eric
301-919-2653

]]> Comment on DW and Learning Disabilities by Eric http://www.dandy-walker.org/blog/general/dw-and-learning-disabilities/comment-page-1/#comment-118 Eric Fri, 12 Feb 2010 01:26:27 +0000 http://www.dandy-walker.org/blog/general/dw-and-learning-disabilities/#comment-118 Sounds exactly like our experience with our son who will turn 5yo in May. Our son, Ryan, has what one of his doctors has suggested may be dyspraxia. His receptive abilities are fare more advanced than his expressive abilities. He does understand every word that is said just has problems communicating back. Ryan has an IEP and receives Speech, OT and PT in pre-school. We also supplement with private Speech and OT. He's seen some huge leaps in his verbal skills as his core muscles are strengthened. Before, Ryan would spend a fair amount of time lying on the ground when he would play with his cars, etc. Now, we remind him to "sit up and play" which helps him build his core strength, in turn improving his verbal skills and reduced his drooling. My wife, Andrea, or I would be more than happy to speak with you about it all if you want to give us a shout. Thanks, Eric and Andrea 301-919-2653 Sounds exactly like our experience with our son who will turn 5yo in May. Our son, Ryan, has what one of his doctors has suggested may be dyspraxia. His receptive abilities are fare more advanced than his expressive abilities. He does understand every word that is said just has problems communicating back.

Ryan has an IEP and receives Speech, OT and PT in pre-school. We also supplement with private Speech and OT. He’s seen some huge leaps in his verbal skills as his core muscles are strengthened. Before, Ryan would spend a fair amount of time lying on the ground when he would play with his cars, etc. Now, we remind him to “sit up and play” which helps him build his core strength, in turn improving his verbal skills and reduced his drooling.

My wife, Andrea, or I would be more than happy to speak with you about it all if you want to give us a shout.
Thanks,
Eric and Andrea
301-919-2653

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