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

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.

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Videos

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Forum

PKS Reunion in TX

Started by Elizabeth & Anthony in Untitled Category. Last reply by Elizabeth & Anthony on Wednesday. 8 Replies

30 seizures in one morning

Started by Inder Seth in Untitled Category. Last reply by Edythe and Naomi May 15. 8 Replies

Stirling is home :-)

Started by Sunde Bargas in Untitled Category. Last reply by Inder Seth May 14. 5 Replies

Unusual Behavior When Sitting--Anyone Else???

Started by Stephanie Rodriguez in Untitled Category. Last reply by Stephanie Rodriguez May 6. 6 Replies

unique meet up 2013

Started by tracy ayres in Untitled Category. Last reply by Alessia Acquarola May 2. 7 Replies

Blog Posts

A 6month check up

Posted by Deedra Galvez on May 10, 2013 at 3:20pm 2 Comments

Hi everyone my son Christopher will be turning 7 months on the 17th of May. I have been having a couple of concerns and all I hear from the doctors is "we need to see how he develops" so I wonder if any other parents have gone through these few issuses. 1 vision: Christopher does not focus at me or objects he seems to always try to look upwards, I did take him to the eye dr and he said he doesn't have any eye disease and to let him develop. 2 Sleep: Christopher still sleeps like a newborn he is… Continue

Berkley

Posted by Devon Pierce on April 10, 2013 at 1:55pm 3 Comments

Sometimes I feel like we will never get to go home. She is almost three months old and doesnt know her home. Just when we think we are getting closer we hit another roadblock. I know there are people in worse situations than I am, I'm just having one of those days.

Seizure treatment

Posted by The Woods on March 20, 2013 at 11:39pm 9 Comments

I just wanted to let everyone know that we have had some success in treating Jay's seizures. He's been having them for a couple of years now and we've been seeing his neurologist quite regularly. We originally started seeing him because of the drops Jay was having during the day. He would be sitting there and then suddenly lose all muscle control for just a second and then get it back. He got to the point of having 15-20 of these drops a day. The neurologist put him on Zonisamide and that… Continue

First heart procedure

Posted by Devon Pierce on March 8, 2013 at 2:12am 3 Comments

Today Berkley had her first heart surgery, but second surgery in her life. They went in through her leg in order to try to close the PDA, but unfortunately it was too big and couldn't be done. So they will do a different surgery next week sometime to try to fix it. Pretty bummed about it because we were hoping to be able to be discharged a couple of weeks afterward. This just adds another week to our stay and another week of intubation. On the bright side- her pulmonary hypertension has… Continue

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