tag:blogger.com,1999:blog-31491957.post115816913979554108..comments2023-06-29T17:38:09.948+10:00Comments on Sheena Time: West Syndrome Toojotcr2http://www.blogger.com/profile/01366448629677893285noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-31491957.post-70287945605919449282008-05-01T01:57:00.000+10:002008-05-01T01:57:00.000+10:00Hi there - I am delighted to have stumbled across ...Hi there - I am delighted to have stumbled across your blog because your Sheena looks so gorgeous! It looks to me like her smile is as big as the rest of her! I have a two year old daughter ABigail who has a genetic disease called Jacobsens Syndrome, and she was also diagnosed at birth with West Syndrome. And I just wanted to say that neither are any bother : our little girl is out of this world, and with the medication, doesn't suffer at all from West Syndrome. So chins up and I'm sure you'll find all will be just fine for Sheena with her West Syndrome - it CAN be overcome. Stay in touch - I have taken a shine to Sheena!!!<BR/>Signed : Alison, Abigail's Mama, in FrancePrincess Abigailhttps://www.blogger.com/profile/12462601473590517921noreply@blogger.comtag:blogger.com,1999:blog-31491957.post-8137759352522420412008-04-01T18:05:00.000+11:002008-04-01T18:05:00.000+11:00Dear Jo:I read about your daughter Sheena and I am...Dear Jo:<BR/><BR/>I read about your daughter Sheena and I am contacting you because I face a similar predicament with my own 5 month old daughter. My daughter has spasms about 3-4 times a day. She contracts her head, arms and legs and curls up in a ball and lets out a piercing scream. This occurs for about 5-6 times and then she is back to normal. Her social development also seems to be retarded. The doctors here say 'colic' but I am not convinced. My search on the net pointed me to 'West Syndrome' which seems to fit the bill.<BR/><BR/>I would like to ask you whether Sheena also had spasm in the early months? If yes, how did you go about diagnosing everything and coping with the mental trauma? Please reply to me at rohitvishalkumar-at-gmail-dot-com. It will provide me with some guidance for how to deal with my situation. Many thanksRohit's Ramblingshttps://www.blogger.com/profile/12385885290076954003noreply@blogger.comtag:blogger.com,1999:blog-31491957.post-1158369245530688072006-09-16T11:14:00.000+10:002006-09-16T11:14:00.000+10:00Thanks guys.Thanks guys.jotcr2https://www.blogger.com/profile/01366448629677893285noreply@blogger.comtag:blogger.com,1999:blog-31491957.post-1158361454252497072006-09-16T09:04:00.000+10:002006-09-16T09:04:00.000+10:00I'm so sorry you got this diagnosis for Sheena, bu...I'm so sorry you got this diagnosis for Sheena, but I pray that knowing it will help to get rid of the seizures. I know it is difficult to get unexpected dx's and my heart is with you and your darling little girl. I have heard that kids often grow out of seizure activity, and I pray that this will happen for Sheena. She is beautiful, and whether she ends up on the high end, or the low end, she will still be beautiful, wonderful, and a gift!<BR/><BR/>Hugs!The Momhttps://www.blogger.com/profile/17452676315914884673noreply@blogger.comtag:blogger.com,1999:blog-31491957.post-1158296406894829072006-09-15T15:00:00.000+10:002006-09-15T15:00:00.000+10:00Hi there, my name is Lisa and I know Christy from ...Hi there, my name is Lisa and I know Christy from Blue Bazaar.<BR/>Just wanted to tell you that your little girl is so gorgeous (takes after her mum)and I wish you the best of luck with it all.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-31491957.post-1158220323383557672006-09-14T17:52:00.000+10:002006-09-14T17:52:00.000+10:00Down West Syndrome!Down West Syndrome!Christyhttps://www.blogger.com/profile/11929721043946688284noreply@blogger.comtag:blogger.com,1999:blog-31491957.post-1158199525078796082006-09-14T12:05:00.000+10:002006-09-14T12:05:00.000+10:00I don't know anything about West syndrome, but it ...I don't know anything about West syndrome, but it sounds like she's got good medical doctors looking after her care!<BR/><BR/>Glad to hear she had a nice morning with dad at the playgroup/coffee!Michellehttps://www.blogger.com/profile/02441176684416139172noreply@blogger.com