PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

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Camille Jung pineal gland tumors/cysts

HI, Hope everyone is well. Haley is 6 just began having seizures. Mri revealed an enlarged pineal gland. Nuero believes it to be from a cyst or tumor. Another mri with contrast has now been ordered. Any one else with similar findings??Please keep us posted. Thanks Camille Continue

Added by Camille Jung on November 18, 2009 at 5:28pm — No Comments

Camille Jung pineal gland tumors/cysts

HI, Hope everyone is well. Haley is 6 just began having seizures. Mri revealed an enlarged pineal gland. Nuero believes it to be from a cyst or tumor. Another mri with contrast has now been ordered. Any one else with similar findings??Please keep us posted. Thanks Camille Continue

Added by Camille Jung on November 18, 2009 at 5:28pm — 1 Comment

Gita Pinto In desparate need of advice

Francesca is almost 11 months old. She had found her own rythym with sleeping, eating, napping, and even bowel movements around 5 months. Her behavior and needs were so predictable. Then she had a surgery to correct her anterior anus 2 months ago. Since then, life has been a nightmare. Nothing is predictable. She's on a liquid diet only until fully healed, her sleep patterns are way off, and her bowels don't seem to be functioning anymore. The past 3 weeks have been the worst. She goes days with… Continue

Added by Gita Pinto on November 18, 2009 at 2:08pm — 3 Comments

Abbey, Brayden, Cory Depoorter Gait Trainer

Question. Brayden will begin using a gait trainer. Has anyone ever used one? Continue

Added by Abbey, Brayden, Cory Depoorter on November 14, 2009 at 11:14pm — No Comments

Abbey, Brayden, Cory Depoorter Gait Trainer

Question. Brayden will begin using a gait trainer. Has anyone ever used one? Continue

Added by Abbey, Brayden, Cory Depoorter on November 14, 2009 at 11:14pm — No Comments

ken croxton Neurologist

Hello all, Can anyone help!! we need to find a neurologist who has experience with children with PKS epilepsy, we have a son who is now 11 and suffered with epilepsy since he was 2, we are not getting anywhere with our current doctor and need to see someone, either privately or through referal. We live in the channel island UK and have limited access to neurologists so would prefer a doctor in the UK Many thanks ken croxton.. Continue

Added by ken croxton on November 14, 2009 at 4:14pm — No Comments

Camilla/Lauren Tonsils out and tubes in

Lauren has been sick for about a month and a half and then 2 nights ago decided to not want to breathe for about 10 seconds, until I flipped her over and pounded on her back. She has always had larger than usual tonsils and they just keep growing and 3 ear infections in the past 6-8 months, so off to the ENT we went today. I don't suppose it is a good thing when the doc looks in the throat and say WOW those are huge, well at least they finally agree with me on something. So now on December 11th… Continue

Added by Camilla/Lauren on November 13, 2009 at 2:47pm — 1 Comment

Abbey, Brayden, Cory Depoorter Please Vote and tell everyone!!!! Thanks

my mom got flesh eating bacteria and lost her right dominate arm. She came through what many would say is a miracle. Some of her co-workers have nominated her for a cruise through a local radio station. On Friday, Nov. 6th whoever gets the most votes will win a cruise. For all that she has endured this year. You can vote for her at http://knws.nwc.edu/page.php You can only vote for her this coming Friday afternoon Continue

Added by Abbey, Brayden, Cory Depoorter on November 4, 2009 at 3:44pm — No Comments

Gretchen & Simon Cookbooks

Just a little update on our cookbook sales. We started off with 1000 cookbooks and are down to just about 125. This is phenomenal! A special thanks to Nic and Terzita down under who sold 396 COOKBOOKS for PKS Kids! This fundraiser was a huge success and we hope to do it again. I'm already picking out recipes :) If you need some cookbooks sent to you to sell, please contact me at gpeters@pkskids.net. Thank you! Gretchen Continue

Added by Gretchen & Simon on October 29, 2009 at 5:52pm — 2 Comments

Gretchen & Simon Grant Announcement

Through the fine efforts of Cammie Gray, PKS Kids was just awarded a grant for $29,500 which will be used to send awareness information to nearly 50,000 pediatricians throughout the country! The grant was written specifically for this endeavor and we are so thrilled and grateful to be a recipient! Thank you Cammie!!! Continue

Added by Gretchen & Simon on October 26, 2009 at 8:38pm — 5 Comments

elaine and conor :) just a lil note...

hi everyone, just i would let you all know how conor is getting on , its being a while since i did a blog, well conor is still working at sittin up he is getting alot stronger he sits for about 40 to 50 seconds unaided which is brilliant. he is getting more active , when lying down he brings both his legs up and grabs them with his hands and pulls feet to his mouth, its really funny because it seems to tickle him and he laughs his head off. im doing baby massage on his face to help his low muscl… Continue

Added by elaine and conor :) on October 18, 2009 at 9:30am — 3 Comments

Bec Paton Hannah is 2

Hello everyone! Our little baby turned 2 yesterday. Thanks to generous relatives, she now has a doll with its own pusher, highchair and even a little timber kitchen to cook Dolly's food. It is such a joy to see Hannah pretending to do all of things I still do with Sarah. When I give Sarah a bottle, Hannah gives Dolly one too. Soooooo cute!!! It is all so amazing to us to see "normal" development. I do feel lucky that Sarah was our first bub though, we didn't really realise how much more effort s… Continue

Added by Bec Paton on October 18, 2009 at 1:58am — No Comments

Maria Pederson Hello every body we are new on the chat

Hi all of you We are new on the blog, so i have to find out how this works:-) My name is Maria, my daughters name is Karla, and my husbonds name is Lars. We live in Denmark near by Copenhagen. Our daughter have Pallister Killian and is 3 year old. She is general healthy and happy, and we love her with all our harts. I have so many questions about the syndrome, but i do know that it is very different from child to child. But maybe we could share experience? I would like to know if any og your… Continue

Added by Maria Pederson on October 14, 2009 at 4:31am — 6 Comments

Gita Pinto sleep patterns

Francesca started sleeping through the nights at around 5 months. She slept from 11:00 p.m. until 7:00 or 8:00 a.m. Then at 8 months, everything totally changed. She has been waking up about 20-30 times a night. She sleeps from 12:00 p.m. - 12:30 a.m. Then she wakes up every 10-15-20 minutes for a few hours. Sometimes this goes on until about 5:00 a.m., sometimes later. She finally sleeps again until 8:00 a.m., feeds, then goes back to sleep until noon. This new sleep cycle is really exhausting… Continue

Added by Gita Pinto on October 10, 2009 at 12:00pm — 4 Comments

Nic, Terzita, Adam & Alessia Acquarola News about Gretchen !!!

Hi all, Sorry to do this to you all, but I have on very good authority that October 10 is a very special day for a special (young) lady. HAPPY BIRTHDAY GRETCHEN !!! Hope you have an enjoyable day. LOVE FROM THE ACQUAROLA CLAN (IN PERTH, WESTERN AUSTRALIA) XXX OOO XXX (sorry about the tags) Continue

Added by Nic, Terzita, Adam & Alessia Acquarola on October 9, 2009 at 10:36am — 4 Comments

Noelle & Nasaya Coleman Fever, Bronchitis, & Seizures OH!!!MY!!!!! I betcha Nasaya is scared of Columbus County Hospital in Whiteville NC now.

This weekend I took Nasaya out of town to my hubby's hometown to meet her GreatGrandmother......spending the nite at my sis-n-laws house @ 2am Nasaya woke up wit a fever and I couldnt check her temp bcause I left most of my stuff at home....Luckily my sis-n-law had some motrin and I said I will run in the morning to get what she needs at the store.....well the motrin got the fever down enuff to get her thru the rest of the nite but she was very restless......@ 7am normal wake up time for breakfa… Continue

Added by Noelle & Nasaya Coleman on October 5, 2009 at 10:58pm — 4 Comments

claire wilkins 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 Continue

Added by claire wilkins on October 2, 2009 at 3:44pm — 4 Comments

Abbey, Brayden, Cory Depoorter BIG NEWS

JUST THOUGHT WE WOULD LET THE BIG NEWS OUT. BRAYDENS GOING TO HAVE A LITTLE BROTHER. EVERYTHINGS GOING GOOD Continue

Added by Abbey, Brayden, Cory Depoorter on October 1, 2009 at 8:03pm — 5 Comments

Gita Pinto Surgery

An update on where we are. We just got back from the hospital. What an ordeal. Francesca had a surgery to correct her anterior anus. We were supposed to be at the hospital for a week and on the seventh day, her stiches started to come apart. Unfortunately, all of the them came out and now it'll be several weeks before she's healed. Only then will we know if the surgery actually helped or if she'll need another operation. Anyways, the good news is she's interacting more, smiling more, and making… Continue

Added by Gita Pinto on September 28, 2009 at 2:00pm — 3 Comments

Alexander (Mommy=Blanca) The Fair

I wanted to share w/ everyone that this was Alex’s first year to go to our County Fair. Every year the last week of September our County has its annual fair/carnival and on Friday morning, same week, all of the schools, city and county offices close for the annual parade. It’s a very big deal around here; I have been going since I was little. Taking Alex for the first time was very different than taking our daughters for the first time. My oldest daughter was exactly his age when we started tak… Continue

Added by Alexander (Mommy=Blanca) on September 28, 2009 at 11:06am — 6 Comments

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