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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Interaction

Started by Carrie Bergman in Untitled Category. Last reply by Cathy & Christian (19) 3 hours ago. 13 Replies

Pre-teen girls Menstrual Cycles

Started by Kelsey/ cammie in Untitled Category. Last reply by Kelsey/ cammie 6 hours ago. 7 Replies

Cradle Cap

Started by Vanessa Nava in Untitled Category. Last reply by Carrie Bergman Nov 1. 14 Replies

info

Started by Matthew and Annabelle Muhlestein in Untitled Category. Last reply by Linda Jones & Ashley Oct 31. 5 Replies

Hearing aids

Started by Matthew and Annabelle Muhlestein in Untitled Category. Last reply by Matthew and Annabelle Muhlestein Oct 30. 4 Replies

Blog Posts

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

Ohio PKS Kids

Posted by Linda Jones & Ashley on January 16, 2014 at 1:48am 4 Comments

Today I met Kristen DeSantis for the 1st time.  Although the circumstances were not the best we were able to talk and compare the progress of Bella and Ashley.  It was finally nice to talk to someone else about PKS.  When Ashley was diagnosed over 21 years ago we had no one to talk to.  Kristen was told today that the were 3 children with PKS that had surgery this week.  We would like to make contact with that family if at all possible.  I would also like to make contact with any other…

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Annalee Elise Hand 10-25-2013 Forever in our hearts!!

Posted by Arianna Hand on November 7, 2013 at 11:37am 7 Comments

On October 21, 2013, I went in for my monthly check-up. I heard my beautiful baby's heartbeat.....not at all knowing it was going to be the last time. My doctor did everything as usual but when she measured my belly she said that I was measuring larger than I should be at 26 weeks. She said that it was probably because Annalee wasn't swallowing fluid like she should. The week prior my whole family contracted the stomach virus, the effect that took on me was far worse than I had thought. I…

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Caregivers

Posted by Marcy Stayer on July 2, 2013 at 8:15pm 2 Comments

So, my FAVORITE caregiver has just given notice. She is in school, at age 60, and is coming up on her last semester, which she's been told is the toughest of all. So, to prepare for her future she felt she needed to quit her position with us and focus on her studies. It's difficult to let her go, but I know it's going to be ok. I've been through this many times, as it's so difficult to find good dependable and caring help these days.

I'm a service coordinator with the dept of…

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PKS Kids Video Montage (updated!)

 
 
 

Latest Activity

Cathy & Christian (19) replied to Carrie Bergman's discussion Interaction
"You know, this was pretty much what we went through during Christian's first year of life. He spent way more time sleeping than awake, easily 7-10 small naps per day.  I can remember being frustrated because it didn't seem to…"
3 hours ago
Kelsey/ cammie replied to Kelsey/ cammie's discussion Pre-teen girls Menstrual Cycles
"Thanks for all the advise. Kelsey just turned 11 this October and so far I haven't noticed any changes. I started when I was 12 so we will see what the next year holds. I hope and pray she is a very late bloomer."
6 hours ago
Kathleen Bassett replied to Kelsey/ cammie's discussion Pre-teen girls Menstrual Cycles
"This is helpful information- it's going to enable me to prepare for my daughter better when the time comes to manage her menstruation. Ty!!!"
12 hours ago
Gretchen & Simon left a comment for Kathleen Bassett
"Welcome Kathleen and Abigail!! :)"
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