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Post by 19amanda87 on Feb 16, 2010 16:42:27 GMT
My daughter is 4 months old and we've just been told that she has a mild case of Lissencephaly but i've been looking online and can't seem to find out any information about it being a mild condition. I was wondering if anyone on here has a child or had a child with a mild condition and knows anything about it as everything online is only about the severe case of it. Please email me at amanda_robertson18@yahoo.co.uk Thank You ;D
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Post by lorraine&Leon on Feb 16, 2010 17:30:29 GMT
Replied with my limited knowledge via email.
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Post by bowl3001999 on Jul 28, 2010 19:33:28 GMT
My son has incomplete lissencephaly, in the frontal lobe. I would love to help in any way that I can...my son is 9 and was diagnosed at 3 1/2. My email is: bowl300@womans-web.com
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Post by lins0502 on Aug 10, 2010 2:13:33 GMT
my child is 27 months and has been diagnosed with a mild form can u find anything and the more i find ou tthe more i will send your way
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Post by leximummy on Dec 10, 2010 13:04:12 GMT
hi my 11mth old daughter has liss in the back area of her brain (developmental part) whilst the rest of the brain has the right amount of grooves and folds. im not sure whether this would be considered as mild? or would mild depend on the amount of folds that the child does have?? does anyone have experience of this? amanda have they said whether its mild across the whole brain or confined to one area? the info online is mainly for severe cases and apart from being slightly behind with development (not crawling or walking but can sit up when shes not being lazy!) she seems like a normal baby. she has responded very well to her epilepsy meds and is very alert and enjoys her food very much. some info online is very scary sorry to ramble, have just found this site! only just been given a name for the underlying cause of my daughters epilepsy and general slowness in developing. thanks x
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Post by clairelivi on Dec 13, 2010 12:05:21 GMT
hi mum's, Yes my 2 year old girl has just been diagnosed with incomplete liss. The info on websites is terrifying. I think we are very lucky with Livi as she is now just starting to stand and pull up, doesnt suffer seizures and is just globally delayed by about a year. still no speech (desperate to hear her say mama!) i know so many families have little ones with far worse symptoms. I too crave more information and would love to hear from anyone else. I'll introduce myself to the mum's who've put their emails on here if that's ok. mine is clairesavva@gmail.com please feel free to contact me. x
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Post by alice a kobs on Jan 10, 2011 5:56:22 GMT
hi my name is alice and i have a son name tasmond he has a mild case thay told me when he was 3 mounth old that he wouldnt do anything for the rest of his life and he would dide before he was6 years old and theres not a hole lot of sites to find out about this kind but i can tell you one thing that my son is now 16 and half and dose pulic school and gets good greads there are thing that you well find out so keep up the good work aq encurgers you not to give up if this is help full fell free to email me alice and tasmond
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Post by MonicaRomano on May 31, 2011 0:28:33 GMT
HJi, I am Monica I run a Support Group for families of Cildren Suffering with Double Cortex Syndrome/ Subcortical Band Heterotopia. Lissencephalyis used as an 'umbrella' term to describe a range of disorders where the whole or parts of the surface of the brain appear smooth. The range of disorders include: Miller-Dieker Syndrome (MDS) Isolated Lissencephaly Sequence (ILS) Walker-Warburg Syndrome (WWS) Muscle-Eye-Brain disease (MEB) Subcortical Band Heterotopia (SBH)/Double Cortex Microlissencephaly (MLIS) Microcephaly with Simplified Gyral Patterns (MSG) X-linked Lissencephaly with Ambiguous Genitalia (XLAG) Baraitser-Winter syndrome (BWS) Micro Syndrome Lissencephaly with Cerebellar Hypoplasia (LCH) Lissencephaly with agenesis of the Corpus Callosum (LACC) Schizencephaly (SCH)* Polymicrogyria (PMG)* Our group is live and growing each day. If you want to talk to me and to any of our members, contact me m_romano@hotmail.co.uk or ask to join the group on Face Book: www.facebook.com/permalink.php?story_fbid=10150632097330438&id=202874095437&ref=notif¬if_t=feed_comment#!/group.php?gid=202874095437 Please, get in touch. Monica.
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Post by moms4elmo on Jun 27, 2011 23:00:20 GMT
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Post by Veronica on Nov 5, 2011 7:38:04 GMT
Hi my daughter is now 11 yrs old. She has a mild case of lissencepahly... She seems like a normal child and goes to catholic school but struggles with her academics and daily living activities.I constantly have to remind her to brush her teeth,take her pills etc...great kid but it does get frustrating...but i've come to terms that it's not her fault! so as a parent I continue to do all I can to try and motivate her on things that she enjoys
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Post by mamy sue on Dec 6, 2011 11:57:08 GMT
Dear mums, my daughter is 16months old, she has MDS... i m sure u all have a facebook account, but i m thinking of making new fb account and we add eachother to be always online and also we can share infos and photos... if yes send me on my e-mail your new account and i will add you all... hope we can help each other my e-mail: sally.azmy@hotmail.com
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Post by mamysue on Dec 7, 2011 12:05:50 GMT
Ladies, why you are always offline my daughter is 16 months she MDS, the Dr. said that she will never talk, walk or even sit, as she also has hypotonia, i don't know if all who have lissencephaly have hypotonia, but i can see that she is sitting for few seconds better than before... if you have any idea about this please feed me back...
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Post by Laura on Jul 19, 2013 19:07:24 GMT
Hi my daughter is now 11 yrs old. She has a mild case of lissencepahly... She seems like a normal child and goes to catholic school but struggles with her academics and daily living activities.I constantly have to remind her to brush her teeth,take her pills etc...great kid but it does get frustrating...but i've come to terms that it's not her fault! so as a parent I continue to do all I can to try and motivate her on things that she enjoys
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neek
New Member
Posts: 1
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Post by neek on Nov 19, 2013 3:02:39 GMT
Hi my son is 6 months old and recently has been diagnosed with lissencephaly. Has anybody heard or tried the stem cell therapy?
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Post by nikki on Feb 12, 2015 2:58:42 GMT
Hi my name is nikki, i have a son who is 18 months old and has been diagnosed with lissencephaly. He is now crawling but is very wobbly still. My email is nikkigunther@internode.on.net i would love to hear from people and there stories and ways to help our little ones.
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