PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

Sally-Anne Wilkinson
  • 39, Female
  • Manchester
  • United Kingdom
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Gita, this sounds awful. What a worry. I'm sorry, I can't give you any advice, but I do really feel for you. Big hugs, and I hope you find out what's causing this soon xxx
November 22
November 22
November 17
November 13
Can't wait to see it!
November 12
is wondering if you ever stop worrying aobut your kids??? Stupid question... I already know the answer :)
November 3
Wow! Amazing... Well done you xxx
October 27
Sounds like Conor is doing brilliantly Elaine!
October 26

Profile Information

What is your child's name?
Lucy Wilkinson
How old is he or she?
7
How long ago was the diagnosis?
March 2008

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Sally-Anne Wilkinson's Blog

Sally-Anne Wilkinson

PKS Research

Just to let you know that a doctor called Moira Blyth came to visit Lucy earlier this week. She is doing research on PKS in the UK, and she has contacted families through Unique. Because of the ethics rules in the UK, she is unable to contact families unless she is giving prior permission through a group such a Unique, but if any UK families want to contact her, she has given permission for me to post her details on here.

Just a rundown of what she did - nothing complicated. She took blood and… Continue

Posted on June 11, 2009 at 6:49am — 3 Comments

Sally-Anne Wilkinson

Further Tests

I knew it was all going too well!!! AAARRRGHHHHH!

Lucy went for further tests today as she still has tummy pains, so they are checking for sucrose intolerance too. Unfortunately, as she has already consumed a large quantity of one sick-makingly sugary, syrupy drink that you could stand a spoon up in, there was NO WAY she was going to let another one pass her lips. Nightmare.

We tried EVERYTHING - bribery, threats, and finally, three people holding her down simultaneously whilst trying to force… Continue

Posted on March 4, 2009 at 10:00am — 8 Comments

Sally-Anne Wilkinson

Update on Tummy Pains and Other Stuff

Hey Everyone, hope you're all okay? Love hearing all your news about what your kids are up to, and especially seeing their pictures and videos.

As some of you may know, Lucy has had a prolonged history of tummy pains, which has affected her in many ways, but especially her sleep pattern (7 years of sleep disturbance for all of us) and her behaviour (which degenerates when she is feeling particularly unwell.) We have had numerous tests over the years, but the docs didn't consider intolerances be… Continue

Posted on March 1, 2009 at 2:52pm — 9 Comments

Sally-Anne Wilkinson

School Nativity

I''ve just been to see Lucy in her school nativity where she had a couple of lines to recite as the Angel Gabriel. I know a mother shouldn't brag, but I think she was brilliant, and it made me realise just how much she has come on since she has started school. When the school gave her the part, I was very dubious, as she is still not independent at all at school, and has to be accompanied everywhere, but tonight she went on stage in front of over 200 people and said her lines from memory so that… Continue

Posted on December 8, 2008 at 4:40pm — 14 Comments

Sally-Anne Wilkinson

'NUMBER TWO' blog... Lol :)

YAY! Lucy did her second poo on the toilet. She actually told me she needed to go (rather than it be a by-product of going for a wee), and after she had 'done her business' she said (and this is for you Spesh) 'Did it go to Pooland?'

I know her toileting isn't solved. In the two days since my first blog, Lucy has had 3 wetting accidents, and two soiling accidents (her bowel and bladder regularity obviously isn't a problem), but I am pleased that she understands the sensation of needing to go to… Continue

Posted on September 11, 2008 at 4:56pm — 10 Comments

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At 4:52pm on November 17, 2009, tracy ayres said…
hi sal,just thought i'd say hello and hope you are all well xxx
At 11:58am on November 13, 2009, Kelsey/ cammie said…
Hello Sally

Hope things are going well

Just a update on the 2010 Medical Conference for families with PKS Kids. This year the board has come up with a way to help families meet the financial need for attending the conference. If you are interested in attending and have questions on how this works please contact me at cammie_gray@hotmail.com


Everything will be keep confidential
At 9:46am on October 12, 2009, elaine and conor :) said…
hi sally
pregnancy is going great, no sickness at all, dont know the sex so it wil be a nice surprise. kelly hopes its a girl.
conor is always smiling and laughing he is such a happy lil chap! its brill, but like all kids he does have his moments of grumpyness. he will let you know when he is not happy and grunts and screams at us...
hows lucy doing ? what class is she in this year?
At 8:31pm on October 11, 2009, sophie cantin haguenauer said…
Thank you very much Sally. Do you know what kind of doctor I need to see. I hesitate between his pediatric or a skin doctor.

Again thank you for your support,
sophie
At 5:21pm on October 11, 2009, Vania Vincer said…
Hi Sally, Santi is doing well thank you. He's 2 now, cant believe it, time is going so quick. I met up with another family near us in Corby who have PKS diagnosis for thir 2 year old daughter too. Newly diagnosed. The family arent on here yet. How are you doing? xx
At 4:21pm on October 10, 2009, Luis, Speshelle, Kennedy and Zoe said…
Im soo happy you say she look like me!!!!..SHe is a handle full!..both of the girls together keep me sooo busy!..Im still breastfeeding so im drained but she is sleeping through the night well. Kenny still wakes 2 a wk lol little party animal. Kennedy is vocalizing soo much there is not a minute when she is up and quiet. ( she is talking to the ceiling fan right now)..I guess she gets her hair from her father. I was born bald! but had soo much hair growing up so maybe both of us..Hows Lucy???
At 3:20pm on September 19, 2009, Becky, Scott & Devon Gardner said…
Thanks for the kind remarks on Devon's new pictures. He is little mister independent at the moment. He wants things his way and only his way. What ever happened to my complacent child who would just sit and do one thing forever? I wouldn't trade the new Devon for the world. He is turning into such a little boy. Our biggest obstacle at this point is speech. At 3 and a half he has a handful of sounds, but no real speech yet. Like everything, Devon is on his own timetable. We'll keep going with speech therapy and when he decides it's time to talk he'll do it. That's pretty much been how we have done the rest of our achievements :)
At 12:03am on September 14, 2009, Luis, Speshelle, Kennedy and Zoe said…
Kenny is too much Sal!..She is soooo manipulative! she tricks us! On that pic she didnt want to sit up so her father stood behind her so she straightend up lol. Her therapists thinks she is one of the most manipulative kids they have...leave it to me to have the stubborn kids..im not even gonna start on Zoe she is toooo much! at the tender age of 7 weeks ( tomorrow) she is already too opinionated! they both are driving me crazy they are soooo cute though
At 4:37pm on September 7, 2009, elaine and conor :) said…
thanks sal .
he looks real grown up now, hows lu
At 9:25am on August 28, 2009, Crystal said…
Thanks Sally, Jaden is doing well. Still trying to get the walking down packed. I know he will get there. How is Lucy?
 
 

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