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A copy of the current financial statement of the Dandy-Walker Alliance, Inc. is available by writing to: Dandy-Walker Alliance, Inc. 10325 Kensington Pkwy Suite 384 Kensington, MD 20895 or by calling 1-877-Dandy-Walker. Documents and information submitted under the Maryland Solicitations Act are also available, for the cost of postage and copies, from the Maryland Secretary of State, State House, Annapolis MD 21401, 410-974-5534.
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New DWS Diagnosis

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?

March 8th, 2010 | Category: General

1 comment to New DWS Diagnosis

  • Terri
    March 10th, 2010 at 1:03 pm

    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

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