tag:blogger.com,1999:blog-4957599952905416639.post5894957499059518486..comments2015-06-03T16:17:26.371+01:00Comments on EMILY JEAN and KOOLEN DE VRIES SYNDROME [formerly 17q21.31 microdeletion syndrome]: Epilepsy........Anonymoushttp://www.blogger.com/profile/12546890210934703637noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4957599952905416639.post-85002423622118431052009-10-20T14:38:58.170+01:002009-10-20T14:38:58.170+01:00Up to now Ash they have just upped her medication ...Up to now Ash they have just upped her medication to hopefully keep it controlled again. However Emily's neurologist has now left his post and hasn't been replaced as yet so when she has a new neuroligist it will be something I will put to them and see what they say!!! xxAnonymoushttps://www.blogger.com/profile/12546890210934703637noreply@blogger.comtag:blogger.com,1999:blog-4957599952905416639.post-2162702865021464482009-10-20T14:18:03.312+01:002009-10-20T14:18:03.312+01:00Tracey...are they going to do an EEG or just treat...Tracey...are they going to do an EEG or just treat her for it given her history??<br /><br />HUGS again!!Mom to Maddiehttps://www.blogger.com/profile/09961358190500453212noreply@blogger.comtag:blogger.com,1999:blog-4957599952905416639.post-84429903800435096162009-10-19T07:38:14.833+01:002009-10-19T07:38:14.833+01:00Yes 2008 - thanks for that Ash....
Emily was diag...Yes 2008 - thanks for that Ash....<br /><br />Emily was diagnosed with Complex/Prolonged Tonic Clonic Generalised seizures so basically she dropps to the floor totally unconcious with all limbs shaking and unless rescue treatment is given immediately it's hard to get her out of the fit........ some have been 1 1/2 hour long hence ending up ventilated in ICU as they have to shut her body down to get them to stop!! xxxx (frightening times!!)Anonymoushttps://www.blogger.com/profile/12546890210934703637noreply@blogger.comtag:blogger.com,1999:blog-4957599952905416639.post-51268922598286023502009-10-19T00:46:51.419+01:002009-10-19T00:46:51.419+01:00Ahh...don't beat yourself up. Sometimes thing...Ahh...don't beat yourself up. Sometimes things are so slight it's hard to notice. Hugs..cause I hate the sz stuff. You do mean August 2008 in this post, right??<br /><br />What type of Epilepsy was she diagnosed with?? Maddie has Complex Partials which resemble Absence sz but are from a different area of the brain...<br /><br />xxx AshMom to Maddiehttps://www.blogger.com/profile/09961358190500453212noreply@blogger.com