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Post by patricia on Feb 23, 2011 23:33:06 GMT
OMG my heart goes out to you may you find an inner peace from somewhere. I fostered first and then adopted a son who has liss Prof Dobyns could not determine which type and thought it is a combination of 2 or 3 strains he is also a toff (gullet+ breathing abnormalities) he is now 23 and remains as a 3 month baby in all his abilities despite all this he is the light of my life the thought of being without him is devasting so i truly truly feel for you.lots of hugs that I hope will somehow ease your pain Fellow liss parents beleive me enjoy your special little one every day they are their own little person you are all fortunate to have them say a prayer tonight for cindy and her lost babies
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Post by Ylle on Jun 15, 2011 19:04:09 GMT
Hello! I´m new here also. We are from Estonia and as far as I know we have I think 3 liss children in Estonia. Thirst diagnose in Estonia was in 2006. My son Trevor was diagnosed liss in may 2011 when he was 4,5 months old, as the doctor sayd he has almost completely smooth brain. Now we are 6 months old and we are waiting for the genetic result. Doctors said that he had seizures quite a time but I did´t notice (or I think I did´t recognize those movements as seizures because they were weak). But we are doing fine, seizures are quite under control, he´s eating well and also from the sthingy, he loves to talk but he does´t smile yet. I hope it will come some day.
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Post by Julie on Jul 8, 2011 13:17:20 GMT
Hi my sisters little girl has just been diagnosed with lissencerphaly type1, after reading quite a bit about it im not convinced the speacialist told us the truth. My sister asked what her life expectancy was & she was told that Joanna ( her baby girl aged 1) could live till she is 40-50 years, also my sister had complications at 20 weeks pregnant with blood supply going to Joanna's brain, but it wasnt the cause & the actual cause is a genetic disorder from when Joanna was concieved, now my sister hasn't undergone any gene test as yet, but hopefully wont keep her waiting too long. Also i just need to know from other parents out there is there anywhere you can more informaton or are there any organisations that can help my niece with her lissencerphaly.
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Post by gingerone on Aug 11, 2011 20:09:31 GMT
Hi, I am so sorry you are going through this. I am 23+4 weeks pregnant with my second child and have been told baby has Lissencephaly, type and severity unknown and cannot be known until baby is here.
I am also stuggling to find information and support on this. One place you can contact is a charity called contact a family (http://www.cafamily.org.uk/) , there are currently 20 families on there (myself included as of yesterday) that have children with Lissencephaly of all degrees. It is free to join but for £5 per year you can upgrade to gold and this allows you to contact 5 families per day via the forums. I joined as in the grand scheme of things £5 is nothing and the information I could glean on what life is like for a child with Lissencephaly is priceless.
We have to decide if to continue or terminate and we are really struggling.
Feel free to e-mail me and I am happy to help any way I can - natalie.obrien2@ntlworld.com
Kind Regards and Big Hugs
xxxx
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Post by Scoates on Sept 3, 2011 9:22:55 GMT
Hi. wow i thought i was nearly alone! My son (7months) was diagnosed with lissencephaly 1 month ago. He is currently being weaned from ACTH steroid injections that seemed to have stopped visible signs of seizures. Has anyone else used these injections to control seizures? what did you try if/when the seizures returned? It is hard to believe our physically perfect and gorgeous son has such a terrible flaw. i would love contact from any families in New Zealand. cliffsarah@gmail.com
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Post by Carey Jenks on Oct 1, 2012 13:39:35 GMT
Hi, I'm new here, but was doing some research on the subject of Lissencephaly and found this board. A very good friend of mine has a daughter who just delivered a baby boy (8 days ago). They knew that she was sua and also Battledore placenta, and the baby has just been diagnosed with severe Liss. Not sure of the type. He has never cried, opened his eyes or moved at all. The family is absolutely devastated. I've never heard of anything like this, and was just wondering if anyone else has had this type of experience, or know anyone who has had an infant with this level of disability? God Bless you all and your little ones
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Post by Ellen G on Jul 11, 2016 5:56:36 GMT
Thank you for your answers. (Didn't really find out how to reply to every single one of you...) Caroline, I'm so sorry for your loss. Declan really seemed to be such a beautiful boy... "Amstockton" and "Bec", Thank you for sharing your experience. Anna Hi Anna. Can you give me your email adress here so i can contact you on email? If i understund you right you live in sweden!? I live in finland and i take care of a 6 yearas old girl with miller d**er syndrome. It should be nice to speak with some other in Scandinavian who know something about this syndrome! I speak Swedish so its okey to answer on swedish /Ellen
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Post by beckyandkayla on Jul 14, 2016 19:21:34 GMT
Hi. Our daughter Kayla is 21 years old. She was diagnosed as ILS Grade 3A (Grade 3: mixed agyria and pachygyria). Her brain is very smooth. Kayla is still very much a baby. She tests at about a 3 month old.
As a Liss mom I am lucky in that I am Kayla's grandmother. She came to live with us when she was 6 months old and I was 48 years old. I worked at home until she was about 3 years old. After that I used her as an excuse to be a stay at home mom. I know that most liss moms are unable to do this.
Now at 21 Kayla is 74# and about 40 inches long. She is pretty healthy. Our only daily issues are seizures and scoliosis. We use phenobarbital for seizure control. After 4 years of doctors experimenting with various seizure meds we found a wonderful Doctor in Dallas, Dr Roy Elterman. He was a godsend. He was a less is more doctor. He has since retired but he taught us to remember first and foremost Kayla is a little girl. She loves to be held and snuggled and played with. The seizures and stuff are the side issues.
I would be interested in meeting parents who have older kids. It is different when your Liss child no longer is a baby.
Becky
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