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Post by monicaRomano on May 31, 2011 0:48:13 GMT
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)* I run a support group for famiies living with these conditions. We are all going through the same. I and all the other members are keen to find as many parents as possible to communicate with, chat with, cry and laugh with. conatct me on: m_romano@hotmail.co.uk I am running a survey. Please have a look at the 3 links and answer the questions on each link. Thank you all. Please, get in touch! > part 1 > www.surveymonkey.com/s/2KQZYJS> > part2 > www.surveymonkey.com/s/2KNBM9J> > part3 > www.surveymonkey.com/s/2KB7S5X>
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Post by moms4elmo on Jun 27, 2011 22:55:34 GMT
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Post by Dare on Apr 21, 2012 22:42:08 GMT
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Post by mirandasmomma on May 16, 2012 18:45:44 GMT
I guess I really don't know how this thing works cuz I have just been dealing with my daughters condition among our family but I could really use some outside support.. There are so many questions and decisions when it comes to the disease and how to best meet our daughters needs. I know that ultimately any decision we make needs to be made based on what her father and I and her medical team agree is the absolute best for her but I am just thinking maybe insight from outside our care team may help us to make the best decisions.
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Post by Mommy 99 on Feb 10, 2014 11:08:58 GMT
My daughter is 4 months has just been diagnosed I am going trough hell don't know what to expect can sombody please help an shed a little light please
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topaz
New Member
Posts: 2
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Post by topaz on May 24, 2014 6:20:47 GMT
My daughter is 4 months has just been diagnosed I am going trough hell don't know what to expect can sombody please help an shed a little light please
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topaz
New Member
Posts: 2
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Post by topaz on May 24, 2014 6:26:50 GMT
Hi I am all new with this...I have a baby boy...7months, just trying to research & get information. So if anyone can help or is willing to share some stories it would be really much appreciated. Thanks
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Post by Leslie on Sept 13, 2014 0:37:55 GMT
My so. Was just diagnosed with lissencephaly. He is 8 months old I am reaching out for advice and support
Please email me at lesliepiluso@gmail.com
Thank you
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Post by Laura on Oct 7, 2014 16:11:00 GMT
Hi my son is 6 and has lissencephaly . He was diagnosed at 2 years old . I would not have known anything was wrong if he hadn't of had a seizure . He looks normal but has epilepsy and has slight learning difficulty but it's not that obvious at the minute . I don't know anybody else who has this and I'm beside myself as the future is uncertain for him . Any help info or even a chat would be great
Thanks Laura
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Post by Laura on Oct 7, 2014 16:13:16 GMT
My email is llaurajane81@aol.co.uk
Thanks
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Post by Batmans mommy on Feb 21, 2018 21:53:38 GMT
I am so lost. This is all new to me. My son is 6 months and was just diagnosed. I feel like im dying inside. I have nobody to talk to
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Post by Vejas Mum on Apr 13, 2018 9:58:27 GMT
Hey Batmans mommy, I just find out that my 5 months boy has lissencephaly... I know how you feel.. I am dying inside too. I cant stop crying... He is on high meds to control his spasms and it is so hard to see him like this.. he just sleeps and cries..it seems like my boy has gone... He was such a smiley and happy boy.. I just want him back
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Post by Vejas Mum on Apr 13, 2018 10:00:02 GMT
I am so lost. This is all new to me. My son is 6 months and was just diagnosed. I feel like im dying inside. I have nobody to talk to Hey Batmans mommy, I just find out that my 5 months boy has lissencephaly... I know how you feel.. I am dying inside too. I cant stop crying... He is on high meds to control his spasms and it is so hard to see him like this.. he just sleeps and cries..it seems like my boy has gone... He was such a smiley and happy boy.. I just want him back
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