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Post by matthewsmum01 on Oct 1, 2007 21:59:50 GMT
Hi, my son who is now nearly 18months old was diagnosed with lissencephaly not long before his first birthday, as yet we have not been told what type of lissencephaly he has although they say it is unlikely he has Miller Dieker.
I would just like to hear from some others who are going through similar experiences as myself as i sometimes feel that those who don't have a child with lissencephaly just don't seem to realise just whats going on and the whole picture.
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Post by Caroline on Oct 2, 2007 14:00:57 GMT
Hello fellow angel mummy, My name is Caroline and i am mummy to the most georgeous 5 year old Declan who has type 1 Liss (ils) My advise to you is simply take each day at a time and just see and deal with what the day unfolds, if you take on board everything you see and hear about Lissencephaly you would so spoil the time you have with your precious lil man!!! Feel free to email me anytime honey cazbar_8@hotmail.com or read more about my lil man www.declan-kelly.com
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Post by lorraine&Leon on Oct 2, 2007 21:33:46 GMT
Hi
I remember when I first got my son's diagnosis (Isolated Lissencephally Sequence). It was a strange feeling. Partial fear and panic combined with almost a sense of relief that it wasn't just me being a bad mother.
The doctors explained what caused it, showed me the scans and arranged for further tests to rule out any associated syndromes. I came home and searched Google for info and found this site. Although I don't post very often, I do read other people's updates and find comfort in them. I'm sure you will too.
Thankfully Leon is happy and pretty healthy. I didn't think he would hold his head up, but he did. Didn't think he would sit unsupported, but he did. Now he is standing with support and vocalising with vigour. He has school friends that enjoy his company and gives the best kisses (probably the wettest).
I suppose what I'm trying to say is that you never know how your child will develope. Parents often feel pride and joy about seeing their childs' first steps, hearing their first words. With a disabled child you appreciate the tiniest of things. Just seeing Leon reach out to touch a tree or shout at trucks is amazing. The milestones get broken down into pebbles and you don't miss one of them.
There's a photo of Leon on the 'children' link of this site. He gets cuter each week! (sorry, I'm allowed to be biased :-D )
All the best to you both.
Lorraine
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linda
New Member
Posts: 16
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Post by linda on Oct 3, 2007 13:56:41 GMT
Hello Matthews mum
I have a beautiful little girl Jessica Lily who will be 4 at the end of this month...Crikey... where did those years goes!!
Jess was diagnosed with lissencephaly after an MRI brain scan a couple of years ago now. Since then Miller Dieker and Cobblestone liss has been ruled out. New bloods were taken from her and us in July and are anxiously awaiting results.
We would just like to have a full diagnosis now. It won't change anything about Jess, she is still our precious little girl and she is such a star.
Back then, when we first realised, or was told of jessicas condition we didn't imagine she would be doing the things she is doing today. She can roll when she wants to get something, sit up un-aided for short periods of time, stand with support, comando crawl, grasp and release.
we take Jessica to the Brainwave therapy centre ( therapy for brain damaged children) shes been on the programme for just over a year now and the progress she has made is really good, she is so much stronger.
I hope this gives you some comfort
linda
Ps: Lorraine; Leons mum, just looked at photo of Leon, how cute is he... what is he sitting in on the sofa? and where did you get it from? our children are almost the samr age.
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Post by lorraine&Leon on Oct 3, 2007 15:27:04 GMT
Hi Linda
That's Leon's hoisting sling that he's sitting on. I don't have to use it as often now as he can do standing transfers into most of his equipment. If you want to contact me about equipment, or anything else, please do. My email address is lorraine.jenkins@talktalk.net
I'm on Facebook too, with lots more pictures of Leon on there. Feel free to find me and add me.( That goes for all of you too).
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Post by pamela on Oct 4, 2007 2:00:56 GMT
Hello, It's been a long time since I've replied to any message on this site, but thought that I could try to give a little advise. My daughter Macenzi was diagnosed with Pachygyric Lissencephaly when she was 10 days old. It's always hard to hear that your child will not lead a "normal" life as they say and I've never felt so completely lost when told of the news, but we all do learn to deal with whatever is put in front of us. My advise is to never expect to much or to little in your sons life as only time will tell of his developments and no matter if there are none or if there are many you will still love him with all your heart. You will love that child more than you could ever imagine and you will learn more about yourself as well. We all want to hear the words "I love you mommy" along with a getting a big hug, but even if you don't get that don't ever forget that they do love you and in their own way they are letting us know just that when you feed, dress, bathe, etc. them every day along with just holding them in your lap rocking them. They truly are special little angels sent by god because they give you a special feeling of love that can not be given by anyone else. Just give your best each and everyday and when you need a break, take it. And if you don't want to take a break or get away like some people may tell you, don't! Only you know what is best for both you and your child. And sad to say, they are not with us as long as we may want, so enjoy everyday as if it is your last. Macenzi passed away 3 1/2 years ago and it still feels as if it was only yesterday. She had a very rare form of lissencephaly and was only to live to the age of 2 at most, but she continued to surprise them all and died only 1 month before her 6 birthday. She had no more voluntary movements or responses than a newborn baby has and had seizures continuously all day, every day. But I will say that she was a beautiful little girl, with long wavy blonde hair and big blue eyes with the longest eyelashes you've ever seen. This was always the hardest, because she looked like any other little girl but she just wasn't able to communicate or voluntarily move in any way, other than when having a seizure. It was hard at times, but I wouldn't give even one day back that I had because she gave so much to me and my family. So enjoy Matthew with all your heart as I'm sure you are already doing. One final and most important thing... find a doctor who specializes in lissencephaly and one that is open and honest with you. Once I had that life became a little easier! Good Luck and Take Care!!!!
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Post by lorraine&Leon on Oct 4, 2007 9:38:19 GMT
Hello again. Pamela, I just read your story about Macenzi and my heart goes out to you. She sounded absolutely beautiful. My Leon also has Pachgyria with Schizencephally. I just wanted to say something which I hope doesn't make you feel undermined in any way. When I first received Leon's diagnosis, the doctors said nothing about a shortened life expectancy. I immediately researched online and found this site, and subsequently read that he could have a very short life. Obviously I was devastated at the prospect. For two years I never had the nerve to ask the opinion of his consultant. Maybe I didn't want to hear it. Anyway, when I finally did ask if he was likely to have a limited life, I was told that there was no reason why he should. It is not the Lissencephally that takes these children. It is the complications that can (in some cases) come along with it. Leon feeds and drinks well (mushy solids and thickened drinks) but he is still immobile. The immobility can bring about pneumonia and epilepsy is always a danger, even for healthy people. We take measures to avoid these (flu jabs, changing position regularly and controlling the epilepsy).
I agree that you should relish each day. I certainly do. I just wanted to point out to Matthews Mum that she has only just got her diagnosis and we have no idea of the severity of the case. The differences can be astounding, even within the same type of Lissencephally.
I realise that I am fortunate that my sons Liss is not so severe and that he is thriving well and other children are not so fortunate. I just wanted to balance the discussion and show Matthews Mum that there may well be a more positive scenario for them.
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Post by sarah1303 on Oct 4, 2007 18:33:53 GMT
Hi My 10 month old Emma has Type 1 Liss and Miller Dieker she also has a heart condition Tetralogy of Fallot. Emma was diagnosed at 1 month old but until she was 6 months old she was taking a bottle and we'd started on solids then the seizures started and since then she's been in and out of hospital, she is there at the moment. Emma also has a G tube but she's very alert and smilie. It's so hard with Emma because of the heart condition, sometimes it's hard to tell which is causing the seizures.
But i've learnt that you do have to take every day as it comes because life is so unpredictable.
Sarah North East UK
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Post by matthewsmum01 on Oct 7, 2007 20:47:44 GMT
Hi to everyone
I would just like to thank all of you for your comments i appreciate this very much.
I have learned through time that you just have to take each day as it comes and make the most of that day with your precious children. Matthew has the most gorgeous smile and when you are feeling a bit down you just have to look at him with that gorgeous smile and it brightens up your day.
I have only recently started to take Matthew to a group in Lanark which i am sure will help him as it has really good facilities. At the moment Matthew cannot sit up unaided crawl or do anything like that he still has a bit of a floppy head but this is improving slightly with the help of physio, he does babble though some days more than others, and giggles when you tickle him which is just so cute.Matthew is taking fluids from a spouted cup and has a healthy appetite. He has two wonderfull big sisters who adore him soo much and do everything they can to help him and of course he has two loving parents who just love him so much no matter what he throws at us.
Once again it has been much comfort reading about your precious little ones and i hope to keep posted with you all.
Ps. Sarah Emmas mum i hope that Emma gets better soon and is back home with soon. X
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Post by Romeka Richardson on Mar 10, 2009 3:04:38 GMT
Hello again. Pamela, I just read your story about Macenzi and my heart goes out to you. She sounded absolutely beautiful. My Leon also has Pachgyria with Schizencephally. I just wanted to say something which I hope doesn't make you feel undermined in any way. When I first received Leon's diagnosis, the doctors said nothing about a shortened life expectancy. I immediately researched online and found this site, and subsequently read that he could have a very short life. Obviously I was devastated at the prospect. For two years I never had the nerve to ask the opinion of his consultant. Maybe I didn't want to hear it. Anyway, when I finally did ask if he was likely to have a limited life, I was told that there was no reason why he should. It is not the Lissencephally that takes these children. It is the complications that can (in some cases) come along with it. Leon feeds and drinks well (mushy solids and thickened drinks) but he is still immobile. The immobility can bring about pneumonia and epilepsy is always a danger, even for healthy people. We take measures to avoid these (flu jabs, changing position regularly and controlling the epilepsy). I agree that you should relish each day. I certainly do. I just wanted to point out to Matthews Mum that she has only just got her diagnosis and we have no idea of the severity of the case. The differences can be astounding, even within the same type of Lissencephally. I realise that I am fortunate that my sons Liss is not so severe and that he is thriving well and other children are not so fortunate. I just wanted to balance the discussion and show Matthews Mum that there may well be a more positive scenario for them.
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Post by beyerstwins on Mar 22, 2009 16:27:15 GMT
Hello, my son William has lissencephaly but we have not discovered which kind or which syndrome it may be associated with. He also has some other brain malformations that affect his development. He is 20 months old and still at a 3-5 month developmental level. ALthough I would change him if I could and enable him to do the things his peers can I still love him so much. I try to accept the things I can't change and yet still be an advocate for my child to reach his full potential.
I agree that learning to take one day at a time is so important. It can be difficult but it makes everything more bearable. With William everyday can be different from the next, especially concerning seizures and eating abilities. So I snuggle him and love him and try to do our best one day at a time!!!!
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Post by amstockton on Apr 14, 2009 20:39:13 GMT
I just wanted to say I love the last comment on here it tells a true picture. Yes our children are fighters and are always fighting a battle but love, kisses, hugs and smiles makes everything worthwhile x
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Post by kmanley on May 4, 2009 20:01:38 GMT
I am in the same exact situation. Madison was blanket diagnosed with Lissencephaly in November. Dr. Dobyns has had her MRI, EEG, and chrosome results for 5 months and we haven't heard back. I am so annoyed that I e-mail poor Mary at his office once a week.
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Post by sarah1303 on May 19, 2009 18:28:18 GMT
Hi all, my little girl Emma had Miller-Dieker Syndrome and a heart condition. She was born at 42 weeks normal pregnancy so when we found out is was a big shock. The first 6 months of her life she was ok but then her seizures started and we were in and out of hospital. Sadly she passed away on 4th Dec 2007 only 3 days away from her 1st birthday.
So my advice to everyone is take each day as it comes!
Love to all our little angels & families x
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Post by Mom of Harmony on Jan 11, 2010 15:10:29 GMT
Hello, My daughter too was just diagnosed on Thanksgiving day, the day she turned 6 months old... You need to sign up for the Lissencephaly loop at lissencephaly-subscribe@yahoogroups.com. you just send them an email. This site is WONDERFUL everyone on their has children with Lissencephaly roughly 650 members alot of whom have children well into there 20's, some in there 30's and even a few in there 40's. There is always someone on there looping a new topic concerning our special children.
There is also no delay on how fast you get any question answered.
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