http://www.dandy-walker.org/blog/general/writing-book/ Hosting a forum for open dialogue about Dandy-Walker Syndrome Thu, 02 Feb 2012 19:35:01 +0000 hourly 1 http://wordpress.org/?v=3.3.1 http://www.dandy-walker.org/blog/general/writing-book/comment-page-1/#comment-225 jennifer.polo Wed, 08 Sep 2010 14:34:01 +0000 http://www.dandy-walker.org/blog/?p=829#comment-225 Thank you very much for responding to my post. I hope very much that everything goes well with your daughter and the doctors can find an answer to help her. The patient I met had involuntary eye movement from side to side. I do not remember any extending of the legs but he would have some of his arms but for a very short period of time which I only saw once or twice. Thank you very much for responding to my post. I hope very much that everything goes well with your daughter and the doctors can find an answer to help her.
The patient I met had involuntary eye movement from side to side. I do not remember any extending of the legs but he would have some of his arms but for a very short period of time which I only saw once or twice.

]]> http://www.dandy-walker.org/blog/general/writing-book/comment-page-1/#comment-224 Hiara Sun, 05 Sep 2010 20:19:39 +0000 http://www.dandy-walker.org/blog/?p=829#comment-224 I am very happy to you are writing a book about DWS. So many people especially in the medical field either know little about or never came across a patient with it. I would like to ask you if during your research did you come across a patient who experienced involuntary movement of legs and arms but it was not a seizure. My daughter who is 3 years started in July extending her legs and arms in repeative fashion , moved her eyes upwards and began to sweat tremendously. At first these episodes would last 20 mins and at that point we thought it was a way of her trying to sit up on her own. Last saturnday she did it for 5 hours and we got concerned brought her to the ER. The doctors admitted her to hospital thinking it was seizures. They sedated and did a series of CT, MRI , EEG. Test reveal it was not seizures but we do not know what it is . We are still in hospital for observation and last night she had another episode of repeative leg and arm extensions for 5 hours. They sedated her again and now they are going trying giving her low dosage of sedatives every 8 hours to see if this could prevent her having these episodes. I am very happy to you are writing a book about DWS. So many people especially in the medical field either know little about or never came across a patient with it. I would like to ask you if during your research did you come across a patient who experienced involuntary movement of legs and arms but it was not a seizure. My daughter who is 3 years started in July extending her legs and arms in repeative fashion , moved her eyes upwards and began to sweat tremendously. At first these episodes would last 20 mins and at that point we thought it was a way of her trying to sit up on her own. Last saturnday she did it for 5 hours and we got concerned brought her to the ER. The doctors admitted her to hospital thinking it was seizures. They sedated and did a series of CT, MRI , EEG. Test reveal it was not seizures but we do not know what it is . We are still in hospital for observation and last night she had another episode of repeative leg and arm extensions for 5 hours. They sedated her again and now they are going trying giving her low dosage of sedatives every 8 hours to see if this could prevent her having these episodes.

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