A Forum For Those Touched By Pallister-Killian Syndrome
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claire wilkins
- 34, Female
- leicester
- United Kingdom
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Hi Claire and William
As i wrote earlier today, i am new on this chat, so i dont know if this works...
Also I am not that god at write in english, so i hope you understand me:-)
I dont know what precise what a ketogenic diet is, but i believe it h...
thank you ladies x
Gracie was on the ketogenic diet for 3 1/2 years. Yes, it is very difficult and you have to be willing to change a lot of things in your daily routine in order to make it work. Gracie feeds by mouth, so I had to measure 4 meals a day on a gram sca...
All I know is what I've heard and read and that is that it is very hard to do on a non-tube fed child. It is very VERY precise. One must eat all of the food at the exact time laid out. I've turned it down several times because we just don't have t...
hello to all. william is being considered for the keto genic diet. Anyone familiar with it?? got any tips?? would be much appreciated. best wishes, claire and william xxx
william has same problems with lack of mobility and lies in his back alot and aged 3 has a very asymetrical head shape. we asked about a helmet when he was about 8 months old but got practically no help and i so wish i had pushed the issue. findin...
brilliant boy conor xx
Profile Information
- What is your child's name?
- william
- How old is he or she?
- 2years 7 months
- At what age was your child diagnosed with PKS?
- December 16, 2008
- How long ago was the diagnosis?
- william was 2 years 3 months when diagnosed
Claire wilkins's Blog
keto genic diet
hello to all. william is being considered for the keto genic diet. Anyone familiar with it?? got any tips?? would be much appreciated. best wishes, claire and william xxx
Posted on October 2, 2009 at 3:44pm — 4 Comments
PKS STUDY
hi guys, just wondered if any of uk families are participating in pks research study?? we had an invitation to take part, which we have accepted and i cant wait to here from them! delighted that someone is doing the research on pks and that we can contribute .
Posted on May 22, 2009 at 4:16pm — 3 Comments
stressed !!!!!
get ready for a rant !! my little man william has had so many chest infections from october onwards hes lost weight. seen the dietician who has prescribed a milk drink to hopefully bump his weight up. epilepsy is still very poorly controlled and the last few days william has started doing seizure activity on waking again. we had got rid of those at one point but have returned. then last week we had his paed review , updating etc. The registrar decided to mention to talk about making decisions ab… Continue
Posted on March 16, 2009 at 10:08am — 5 Comments
Comment Wall (10 comments)
- At 10:10am on November 13, 2009,
Kelsey/ cammie said…
- Hello Claire
My name is Cammie Gray I am a parent of a PKS Kid and a board member. 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 5:05pm on March 14, 2009,
tracy ayres said… - hi claire just to let you know that we are having a uk family reunion this year if you are interested,if you have any questions let me know xx
- At 12:23pm on February 6, 2009,
ANDREW GRUNCELL said… - Hi Claire
I'm Vania, mum to Santi, 16 months with PKS. Andy (Santi's daddy) is usually on here as I dont get much time to spend online. We spent alot of time in Leicester hosp. I live in Wellingborough, Northants and would love to meet up some time both with you and Julia.
- At 10:26am on February 4, 2009,
Julia Bainbridge said… - Hi Claire
I'm Julia mum to Matthew who is 8 years old with PKS. I notice you are in Leicester. I have a sister in Market Harborough, would you be interested in meeting up sometime when I'm up visiting her?
- At 6:19am on February 2, 2009,
vicky & peter said… - hi, yes it is such a big unknown .. this seems the best way to find out about pks. i have found that it has made it less scarey .. seeing other children and reading about their experiences etc. less of an unknown. thanks for messaging us. vicky
- At 4:26pm on December 30, 2008,
Luis, Speshelle, Kennedy and Zoe said… - Kennedy loves the camera too!..Its like she knows what im doing
- At 4:03pm on December 30, 2008,
Luis, Speshelle, Kennedy and Zoe said…
- Isnt William just a cutie!!!..Im the resident baby lover lol..I think all of our kids should be models..and William is just too adorable!
- At 3:14pm on December 30, 2008,
elaine and conor :) said… - hope the little man gets better soon, conor always gets chest infections and ends up in hospital , its so frustrating.
- At 11:11am on December 30, 2008,
elaine and conor :) said…
- hi claire , conor is stil floppy but not as much as he used too. hows william? would love to see photos of him
- At 1:07pm on December 27, 2008,
Gretchen & Simon said…
- Claire, welcome to you and William! We have lots of UK members on here, so I know you'll find lots of friends and lots of help. Please feel free to jump in any time!
gretchen
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