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Post by tony243 on Apr 28, 2008 9:01:09 GMT
hi everyone
my name is tony myself and my wife Val have Kian (19 months old) who was diagnosed with Lissencephaly in May 2007, we would love to hear from anyone to share information and offer support although we have a excellent support team we still at times feel isolated. at the moment Kain is well and suprising everyone
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Post by Meg on Apr 28, 2008 9:44:24 GMT
Hello, my daughter was dx in 2005 when she was 20mths old we live in New Zealand and I know how lonely it is there are approx only a max. of 10 kids in new zealand with liss and they are all around the country. Cait is lucky as she has a dcx mutation and is able to walk (with afos or walker) her seziures are not controlled and we are on our seventh drug thingytail. cait is non verbal and ataxic and is gdd but to us she is just cait.
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Post by tony 243 on Apr 28, 2008 18:15:31 GMT
hi
thanks for the reply, we live in the uk (yorkshire) we know that liss is a world wide condition and it good to know that there are other families in our situation (a situation that we would not swap for the world) we have a large family and Kian is the heart of us all
again thanks for your reply
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Post by Sarah Harrison on Apr 28, 2008 19:16:11 GMT
Hi my daughter Emma was diagnosed with Miller-Dieker Syndrome and Lissencephaly at 1 month old she also had a heart problem. We also live in Yorkshire. All i can say is take each day as it comes and every Liss child is different.
Emma gained her angel wings 3 days before her 1st birthday.
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carl
New Member
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Post by carl on Jun 22, 2008 14:52:53 GMT
Hi Tony,
My son Callum was born October 3rd 2007, for the first 12 weeks life passed by as expected with any new born, On December 27th Callum had his first fit which resulted in us taking him to the Childrens hospital in Sheffield,we came home on December 31st 2007 with our son who had now been diagnosed with Lis1 and sub cortial band hetrotopia - Happy new Year!!. Since then lifes been a struggle as you will know with good days and bad, In the last few months Callum has been diagnosed as having West Syndrome, for the last few weeks as he's been on steroids and is fit free at the moment. We get great help from Rotherham Portage service and Sheffield Ryegate centre, let me know if i can be of help to you in any way.
Regards
Carl & Leanna Blakemore
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Post by tony243 on Jun 22, 2008 15:39:41 GMT
Hi Carl,
thanks for the message it's nice to hear that someone lives local to us. we live in doncaster, as yet we dont no what strian of liss kain as (kain is 21 months old) , we to are under the ryegate centre (dr Rittey) the genatic team are looking at kian at the moment as is every other dept. we ahve help from portage Doncaster and Bluebell wood and support groups from DRI (kian is somewhat of a star at doncaster chilrens hos). at the moment kian is doing really well we have learnt that it is easier not to have any expectations and to live for the day
best wishes
Tony and Val Critchley
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Post by patricia on Jun 22, 2008 20:31:48 GMT
Hi Tony and Val Strange as it may be Lee and I live in Rotherham and we too have spent many many hours in Sheffield Chidrens Hospital he was operated on there aged 10 hours for one of his other serious birth defects in fact Lee is well known to many of the staff just mention his name and I feel sure people will remember him Dr Rittey and Barbara his nurse know Lee really well just ask the maybe you noticed Lees pictures om the wall they used to be in Dr Ritteys office.
You are in the hands of wonderful people.
Feel free to ring me for a chat if you wish I am only to willing to help at any time.
01709 382104. 07592458644
Look forward to hearing from you. Pat and Lee
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Post by patricia on Jun 22, 2008 20:43:17 GMT
Hi Tony, My son Callum was born October 3rd 2007, for the first 12 weeks life passed by as expected with any new born, On December 27th Callum had his first fit which resulted in us taking him to the Childrens hospital in Sheffield,we came home on December 31st 2007 with our son who had now been diagnosed with Lis1 and sub cortial band hetrotopia - Happy new Year!!. Since then lifes been a struggle as you will know with good days and bad, In the last few months Callum has been diagnosed as having West Syndrome, for the last few weeks as he's been on steroids and is fit free at the moment. We get great help from Rotherham Portage service and Sheffield Ryegate centre, let me know if i can be of help to you in any way. Regards Carl & Leanna Blakemore Hi Carl, Strange things do happen like yourselves and Tony and Val Lee and myself live in Rotherham as you can see from my posting to Tony and Val. S C H is a brilliant place and Lee owes his last 21 years to them. Lee was one of the first children to receive Portage in Rotherham and for some time I was the parent rep for them I remember taking a bus load full of children, their parents had to go to to Blackpool it was a good day despite the rain. Love to help in any way I can . ring if you wish 01709382104 07592458 644
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Post by patricia on Jun 22, 2008 20:47:59 GMT
Hi Carl WHOOPS Sorry I don't know what has happened to the message board I don,t know if I pressed a wrong key.
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Post by tony243 on Jun 25, 2008 7:49:57 GMT
Hi Pat left a message in your inbox i think? ? hope you got it ? Tony Val and Kian
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Post by patricia on Jun 25, 2008 22:53:27 GMT
Hi Tony
Yes I did receive it.
Sent you some numbers to your in box. Pat
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Post by michele17 on Sept 10, 2008 5:33:38 GMT
Hi, my name is Michele and I have a 3 and a half daughter Taylah with ILS Liss1. We live in Victoria, Australia. Taylah was diagnosed at 5 months. Taylah is currently on Phenobarb, Sabril, Epilim and Lamictal. We tried Topamax, Clobazam and Keppra last year, all had side effects within a couple of months. The Lamictal we have been on for 10 mths, she was fine for the 1st 6 mths, no seizures, but for the last 3 mths she is having side effects, insomnia, irritable and sensitive to sun light and sudden noices, I cant leave the house without her screaming. We are currently weaning her up slowly but doesnt seem to be helping. Its hard to get and know the right answers from our paediatrician, do we hang in there or try another medication? Has anyone had a similar situation?
Thanks Michele, Craig & Taylah
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Post by KEVIN on Sept 11, 2008 19:12:25 GMT
HI I CAN RELATE TO YOUR PROBLEM, CALLUM MY 8YR OLD SON WAS DIAGNOSED WITH LISS WHEN HE WAS 5 MONTHS OLD. THE IMMEDIATE SOLUTION STUFF HIM WITH AS MANY DRUGS AS WAS POSSIBLE. I QUESTIONED THE CHOICES OF HIS MEDICATION AND I WAS REBUFFED AND THEY MADE ME FEEL LIKE I WAS INTRUDING(HE IS MY CHILD) I THOUGHT SOD THIS . SO I WENT TO A LOCAL UNIVERSITY GOT MYSELF A DEGREE AND INSTEAD OF QUESTIONING THEM I WAS GIVING THEM THE ANSWERS. ANY USE OF DRUGS/MEDICINES ESPECIALLY LONG TERM USE CAN CAUSE MORE PROBLEMS THAN SOLVE. EG. PHENOBARB CAN CAUSE SERIOUS DAMAGE TO THE LIVER/KIDNEYS. I AM AWARE THAT YOUR DAUGHTER WILL REQUIRE MEDICATION TO SUBDUE HER SIEZURES BUT SOMETIMES LESS IS MORE. MY SON IS NOW ONLY ON EPILIM FOR HIS SEIZURES AND THOUGH HE HAS BETWEEN 7 TO 15 SEIZURES A DAY THEY DO NOT SEEM TO DO HIM MORE HARM THAN ALL THE MEDICATION HE WAS ON PRIOR TO THIS.
THANKS
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bec
New Member
Posts: 47
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Post by bec on Sept 23, 2008 12:51:24 GMT
hi michelle my nearly 2 year old daughter was diagnosed with liss at just 8 months, although she is proving the diagnosis wrong. she was on phenobarb, when she was first diagnosed which did nothing, then we changed her on to sabril, which stopped seizures completely, now she is on epilem. We live in sydney. Alyssa sometimes screams if we leave her but we find she is also really clingy at the time, but generally she is pretty good, she does wake at night but she goes back to sleep straight away, its like she is repositioning. How is taylah going?
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Post by michele17 on Oct 1, 2008 0:59:42 GMT
Hi Kevin
Thank you for your reply. Taylah is doing better now, but we did have to increase her Lamictal. She is still on a low dose. We tried last year taking her off the Sabril and the withdrawal seizures and side effects were so severe, the drs decided to put her back on it. Did this happen to Callum when you weaned him off any meds? We also tried taking Taylah off the phenobarb April this year and the same thing happened. This is when all the problems started she was going so well before then. I think it should have been done when she was alot younger, if I had known we would have questioned the drs. I have read that Sabril and phenobarb should be given for infant age. Thanks and hope all is well. Michele
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