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Post by Patriciacooper on May 30, 2015 22:14:41 GMT
my son has lissencephaly 11 he is now 24 having being told over 23 yrs a go he wouldn't live long he is living proof that no one can be certain on the extent of damage only time can tell xx
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Post by Tillyanne on May 30, 2015 22:18:40 GMT
my son has lissencephaly 11 he is now 24 having being told over 23 yrs a go he wouldn't live long he is living proof that no one can be certain on the extent of damage only time can tell xx [brY contact dominic.1234@me.com
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Post by Megan Marie on May 31, 2015 13:28:38 GMT
My Daughter, Marilyn, has just turned six years old and has a mild fomr of Lissencephaly. She is amazing! She runs fast, jumps a lot and is getting out more words than ever imagined(3-4 word sentences). She has never had a seizure though(knock on wood). She does have trouble conversating but she engages other children as best she can. She has been in occupational, developmental, speech, and some physical therapy(she hated PT) since she was 1.5 years old. No Meds yet, but we are seeking a psychologist in hopes for behavioral therapy to aid with some hitting and kicking issues, but who likes being told what to do anyways lol. She is going into SE 1st grade where she only receives language therapy and her teachers love her too. Good luck everyone <3 townmega@hotmail.com
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Post by Unk Frank on Sept 10, 2015 18:21:13 GMT
My Nephew has just been diagnosed with liss, We don't completely know what part of the spectrum he falls under as we are still treating him for his seizures(IS). He is 3 1/2 months and has several daily down from a week ago but still happening. They have increased his dose of steroids to try and stop them. Any new updates or groundbreaking research being done? Any clinical trials, we are the Pacific North West of the United States. If anyone has any advise for us please contact me @ bows2boots@gmail.com
Thank You Unk Frank
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Post by Unk Frank on Sept 10, 2015 18:25:41 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. My Nephew has just been diagnosed with LISS, We don't completely know what part of the spectrum he falls under as we are still treating him for his seizures(IS). He is 3 1/2 months and has several daily down from a week ago but still happening. They have increased his dose of steroids to try and stop them. Any new updates or groundbreaking research being done? Any clinical trials, we are the Pacific North West of the United States. If anyone has any advise for us please contact me at bows2boots@gmail.com Thank You Unk Frank
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Post by Unk Frank on Sept 10, 2015 18:27:15 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 My Nephew has just been diagnosed with LISS, We don't completely know what part of the spectrum he falls under as we are still treating him for his seizures(IS). He is 3 1/2 months and has several daily down from a week ago but still happening. They have increased his dose of steroids to try and stop them. Any new updates or groundbreaking research being done? Any clinical trials, we are the Pacific North West of the United States. If anyone has any advise for us please contact me at bows2boots@gmail.com Thank You Unk Frank
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Post by Carmzy on Oct 12, 2015 23:08:11 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 kim on Jan 11, 2016 16:46:03 GMT
My Daughter, Marilyn, has just turned six years old and has a mild fomr of Lissencephaly. She is amazing! She runs fast, jumps a lot and is getting out more words than ever imagined(3-4 word sentences). She has never had a seizure though(knock on wood). She does have trouble conversating but she engages other children as best she can. She has been in occupational, developmental, speech, and some physical therapy(she hated PT) since she was 1.5 years old. No Meds yet, but we are seeking a psychologist in hopes for behavioral therapy to aid with some hitting and kicking issues, but who likes being told what to do anyways lol. She is going into SE 1st grade where she only receives language therapy and her teachers love her too. Good luck everyone <3 townmega@hotmail.com
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Post by monicaRomano on Mar 14, 2016 16:30:04 GMT
Hi, could I please have a moderator or staff member to delete my post dated: May 31, 2011 at 1:48am as it no longer applies and I would hate for people to be disappointed when they try to contact me. I would really appreciate your help as I am not able to delete the post. Thank you
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Post by Izlan on Sept 15, 2016 10:25:05 GMT
My name is Izlan I am 28 years old I was diagnosed with lessecenphaly at 11months due to my left side of my brain was smooth and smaller than the right side of my brain. It also caused me to have seizures til I was 12 years old,paralyzed me on the right side of my body paralyzed my right hand,leg,foot n toes. Caused me to be deaf in my left ear... I'm very forgetful it' was hard for me to pass in school got harder as I got to high school so I got out in 11th grade I get headaches every other day for long periods of time. Now that I'm older I haven't had any seizures since I was 12 which is good, I am a mommy too 2 children I have a 9 yr old and a 4 yr old and I thank god for letting me life this long.
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Post by Izlan on Sept 15, 2016 10:28:56 GMT
My name is Izlan I am 28 years old I was diagnosed with lessecenphaly at 11months due to my left side of my brain was smooth and smaller than the right side of my brain. It also caused me to have seizures til I was 12 years old,paralyzed me on the right side of my body paralyzed my right hand,leg,foot n toes. Caused me to be deaf in my left ear... I'm very forgetful it' was hard for me to pass in school got harder as I got to high school so I got out in 11th grade I get headaches every other day for long periods of time. Now that I'm older I haven't had any seizures since I was 12 which is good, I am a mommy too 2 children I have a 9 yr old son and a 4 yr old daughter and I thank god for letting me live this long.
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Post by Nidhi on Dec 13, 2016 11:49:45 GMT
My baby is 18 months old diagnosis with mild case of lissencephaly.. still he is enable to crawl nd walk.. kidly tell m wht kind of problems such kind of hve to face.. nd wht else i can do to cure it.
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Post by Husam on Apr 26, 2018 2:43:16 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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husam
New Member
Posts: 2
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Post by husam on Apr 26, 2018 3:23:32 GMT
Hello,
Im Husam from Jordan . My son has been diagnosed with incomplete lissencephaly two years ago.He is 5 now and all i read on the net is terrifying. My son has no problems with sallowing or moving aroud he is even proactive.He also doesnt have mental retardation the main problem is that he doesn't speak he only uses simple words.And we are working on that since then.Can he do better in the future.Thank you. Thepure1978@yahoo.com
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Post by gxqsws on Jul 6, 2019 6:11:02 GMT
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