PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

A public forum for those impacted by Pallister-Killian Syndrome. Please also visit our non-profit organization's site at www.pkskids.com

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Forum

Weekend at a resort with Christian

Started by Cathy & Christian (19) in Untitled Category yesterday. 0 Replies

Been away a while

Started by Cathy & Christian (19) in Untitled Category. Last reply by Linda Jones & Ashley Apr 11. 8 Replies

Interaction

Started by Carrie Bergman in Untitled Category. Last reply by Kathy Ashby Apr 11. 27 Replies

Congenital diaphragmatic hernia with PKS

Started by Erin Urbanski in Untitled Category. Last reply by Juliet and Jason Dawkins Feb 23. 5 Replies

MRI

Started by Maria Schauer in Untitled Category. Last reply by Gretchen & Simon Jan 14. 1 Reply

Blog Posts

Hi, my name i s Gino my sister Serena is affected by psk. She have 24 year the next 7 April. At this moment she have some time convulsion with stomac butterflies and lost sense momentally. The exam i…

Posted by Gino on March 6, 2016 at 9:14am 0 Comments

Hi, my name i s Gino my sister Serena is affected by psk. She have 24 year the next 7 April. At this moment she have some time convulsion with stomac butterflies and lost sense momentally. The exam is negative for brain and heart. Who know this problem?
Thanks for all.
In Italy Serena is the first children to diagnostic psk in 1993 and the knowledge for this syndrome is restricted.
Bye bye from Milan at all family! Bear hug!! Continue

Advice for new member

Posted by Maria Schauer on November 2, 2015 at 7:32pm 1 Comment

My niece got diagnosed with PKS at one month old. She is two months now and just got her surgery to fix her imperforated anus. She will have her spine surgery in two weeks.
We are devastated; life became a big question mark. The uncertainty is hard.
Any advice will be greatly appreciated.

Facebook Parent Group

Posted by Gretchen & Simon on February 26, 2015 at 5:27pm 0 Comments

There is an active Parent Only Facebook group.  If you would like to be added to this, friend Gretchen on Facebook and send her a message.  Thanks!

https://www.facebook.com/gretchen.peters.9

Feeding Problems? or Not?

Posted by opal burks on April 17, 2014 at 9:10pm 2 Comments

Back in February Pia was hospitalized fir what they called Human metapnuemovirus. She stayed 2 weeks in PICU and was sent home. She was still congested but we were told that this would ease in time. Since then she has been hospitalized 2 more times for the same congestion. The congestion was so bad at one point that me and my husband found ourselves giving rescue breaths. She is being treated for asthma and acid reflux. She still has repeated congestion and the congestion seems to get worse… Continue

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PKS Kids Video Montage (updated!)

 
 
 

Latest Activity

Cathy & Christian (19) posted a discussion

Weekend at a resort with Christian

My Christian is 21 and 6'3" and functions on the level of a 1yo--he walks, but does not talk or take care of himself. It is getting harder for us to care for him for any long period of time, so he lives elsewhere with fantastic caregivers. About 2 days with him is our limit. He requires constant supervision because he will wander off.  However, we never know what Christian is going to learn from new experiences, so it's worth all the work to take him someplace from time to time.We have…See More
yesterday
mona schneider left a comment for Israel Cabrera Cienega
"Warum haben sie ein Foto von meinem Kind als Profilfoto???? Mona Schneider"
Saturday
Tara Willis posted a status
"Anyone in OH have experience with children's hospital in Cincinnati?"
Apr 24
Tara Willis left a comment for Tara Willis
"Hey Gretchen...could you please add me to the parent page on facebook? It's my husbands acct...Jonathon Willis"
Apr 16

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