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

Events

Notes

Equipment Exchange

A mom is offering a pair of hearing aides, FFS (Free For Shipping)   They would of course need new molds and to be adjusted by an audiologist. 

They were not covered by our insurance at the time and they had to purchase them through Kaiser. They were previously bought for someone else that ended up not working for them, so we got them at 50% off. Paid $2500. They are now 4 years old, but were used for less than 1 year.  She is just asking for shipping costs only, which I'm sure in the…

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Created by Gretchen & Simon Feb 25, 2013 at 11:58am. Last updated by Gretchen & Simon Feb 25, 2013.

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Videos

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Forum

Supporting Family Members

Started by Heather in Untitled Category. Last reply by Gretchen & Simon 22 hours ago. 4 Replies

Pre-teen girls Menstrual Cycles

Started by Kelsey/ cammie in Untitled Category. Last reply by Cathy & Christian (19) yesterday. 5 Replies

PKS skin biopsy exam - please help

Started by Carla Morgado in Untitled Category. Last reply by Cathy & Christian (19) yesterday. 14 Replies

Vimpat (lacosamide)

Started by Katja Barlic & Ela in Untitled Category. Last reply by Inder Seth on Wednesday. 1 Reply

Trying to stay strong

Started by Inder Seth in Untitled Category. Last reply by Gretchen & Simon Jun 12. 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

Gretchen & Simon replied to Heather's discussion Supporting Family Members
"Yes, Cathy!  Learn how to care for your niece/nephew just as they are and don't be afraid.  Most of us have no family who are willing or able to help with our PKS children. "
22 hours ago
Heather replied to Heather's discussion Supporting Family Members
"Thank you for your responses. I hate all those annoying things people say! I desperately don't want to have foot in mouth, its so hurtful. This bub is loved and wanted by all the family and we will wait to see what the future holds for this…"
23 hours ago
Cathy & Christian (19) replied to Kelsey/ cammie's discussion Pre-teen girls Menstrual Cycles
"I can't speak specifically to girls with PKS, but I work closely with people who have developmental disabilities of all sorts some of them very severe( I'm an RN.) In my experience, most of them have normal sexual development. …"
yesterday
Cathy & Christian (19) replied to Heather's discussion Supporting Family Members
"Just love her and the baby. It is so over-whelming when you find you're going to have a very mentally and physically disabled child. You don't know what to think, what to do, or how to prepare yourself. People often say all the wrong…"
yesterday

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