A Forum For Those Touched By Pallister-Killian Syndrome
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- What is your child's name?
- Billy Byrne
- How old is he or she?
- one year one month
- At what age was your child diagnosed with PKS?
- April 22, 2008
- How long ago was the diagnosis?
- two weeks
BABY BILLY BYRNE
This is our beautiful son, brother to sister Cadhla who is 4 and Ross who is 11. He is the happiest most pleasent baby in the world and we are blessed to have him in our lives.
This is our beautiful son, brother to sister Cadhla who is 4 and Ross who is 11. He is the happiest most pleasent baby in the world and we are blessed to have him in our lives.
Cora Byrne's Blog
Bills new toy
Billys nurse and physio were out today and havent seen him in three weeks (due to hols etc) and they see a great improvement in him especially his reactions and responses. They were also amazed with how alert he was . They brought him out this special table and chair its so cool as it makes him sit up straight with little support and the table fits in perfectly around him so he is able to reach for toys really easily. I think this is going to be really good for him he was delighted with himself… Continue
Posted on June 17th, 2008 at 5:07pm —
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Official Confirmation
We got our official letter of confirmation today confirming that Billy has PKS from the Genetics Dept. Eventhough he was diagnosed verbally I think there is something depressing when its laid out in black and white to you it makes it all so real. He was in hosp today for his hearing his left one is giving no response and his right only very little so he has to have an operation to release fluid from his ears and get grommets inserted and they also have to check his inner ear and see what the pro… Continue
Posted on June 3rd, 2008 at 5:31pm —
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Lucy's quite mildly affected by PKS which is probably why it's taken her so long to be diagnosed. She started off life as a very fractious, demanding baby who cried day and night and needed to breast feed constantly (looking back we wonder if this was a reflux and feeding problem because of hypotonia). I put her in nursery at 19 months for a couple of afternoons for my own sanity, and in the hope it might make her a little less dependent on me. Also, that the other children might help with her development (she was behind with all her milestones). The owner there noticed she wasn't interacting with the other children as you'd expect for a child her age (I was already aware that she was 'different' to other children, but no-one could tell me why.)
Lucy has mild visual and hearing problems, lacks co-ordination and has low muscle tone. She has mild/moderate learning difficulties and is in a mainstream school with full time support (at the moment). She isn't toilet trained, but she can read at an age-appropriate level. She struggles more with writing, but has a great memory, so is good at spelling! Her language is at the level of a three year old, and she is very immature for her age, so the children in her class have to look after her a lot. She's doing really well though and we're really proud of her :) She loves school!
In terms of her milestones, Lucy started to take her first 'confident' steps at 19 months, and her first words (that weren't names) at 3 years and 3 months. She's had speech therapy and occupational therapy along the way to improve her skills, but they're pretty happy with how she's progressing. The school Lucy is at is great, and they have physical groups and social language groups for children with these problems, so Lucy gets extra help there. I'm really pleased with how they've brought her on.
I know how you feel wanting to find out about PKS. Everyone's situation is so different, and what we all want is a clear-cut explanation of how our children are going to progress, and no-one can give us one. Billy looks really healthy and happy though - he looks like he's doing well already!
I like your family pictures you've put on here - I need to get a few from this year, but our camera has broken. We're off on holiday in a few weeks, so maybe we'll get some pictures then!
Take care of yourself
Sally
You're right - Billy is absolutely gorgeous!
Glad to hear that Billy hasn't had any health problems - and he looks like he's full of beans. My daughter Lucy is 6 at the end of May, but only got diagnosed in March. She's doing well though, and we're pleased with her progress.
We're from the UK (Manchester) so please get in touch if you want to chat :)
Sally
Thanks for getting in touch im still trying to upload photos of billy but it dosent seem to be happening dont know if it is this wireless connection im on or not but ill try again as id love you to see him he's sooooo cute.
gonna try now again and hopefully this time it will work
talk soon
cora
Gretchen