What's New Online:

The PKS Support Group is growing and growing!  Our Moderators are working hard to make this group the place to go to go to learn everything about PKS.  Refer your families, friends, doctors and everyone you know to these sites.  The support group is now offering buddies to new members and is also holding regular chat sessions online for those who want to talk with fellow families.

http://groups.yahoo.com/group/pks_support/

Check out the calendar for chat times,

birthdays and other important events.

Wealth is measured not

by the things we have,

but by the things

we have for which we would not take money.

Special Links for PKS:

http://groups.yahoo.com/group/pks_support/

www.pksonline.org

www.pk-syndrome.org

Helpful Websites for Children with Special Needs:

www.enablingdevices.com

www.speechteach.co.uk

www.eparent.com

www.rarechromo.org   

I try and change these each month.  If you find a great website to share, send me an email!  gertyp44@yahoo.com

PKS Support personally touched by Hurricane:

 The Hubert Family resides in Mandeville, Louisiana. This is one of the many areas devastated by Hurricane Katrina. It is located on the north side of Lake Pontchartrain. Please keep them in your thoughts and prayers as they live through this disaster. **9-5-05: Julie emailed us and they are safe in Monroe, LA.

Help those who are displaced

due to Hurricane Katrina,

contact your local

charitable organization to donate.

Red Cross

United Way

Salvation Army

Happy Birthday!

Caleb - 9 years old - August 26

Antonio - 2 years old - September 7

Filippo - 9 years old - September 7

Emilie - 3 years old - September 23

Dox - 4 years old - September 24

Claire - 9 years old - October 16

Melinda - 19 years old - October 22

Maddie - 9 years old - October 25

Caroline - 6 years old - November 16

Todd - 4 years old - November 21

Michael - 11 years old - December 2

Simon - 1 year old - December 3

Sarah - 9 years old - December 8

MaKayla - 4 years old - December 18

Blessings to you on this birthday

and always!

(to add your child's birhtday, please let us know at infantsol@yahoo.com)

As long as one keeps searching, the answers come.

            - Joan Baez, Folk singer

  PKS Poll: 

What is your child’s muscle tone like?

Hypotonia (low muscle tone)        30

Hypertonia (high muscle tone)        1

Normal muscle tone                      4

This poll is one of many created in the PKS Support Group on Yahoo.  To become a member, send an email to pks_support@yahoogroups.com

Special Concern: Scoliosis

Many children with PKS have scoliosis or tethered spines.  Scoliosis signs include:

• uneven shoulders

• prominent shoulder blade(s)

• uneven waist

• on hip elevated as compared to opposite side

• leaning to one side

Much of the time scoliosis is painless & mild and requires only observation and follow-up.  Occasionally it may be more severe and require a brace or surgery. 

If you have any suspicions of scoliosis, take your child to his/her doctor.  In many instances, your primary care pediatrician will refer your child to an Orthopedic doctor. Untreated scoliosis can lead to other health problems.

For more information you can search the web for scoliosis or visit: http://kidshealth.org/kid/health_problems/bone/scolio.html

Web Sites of real PKS kids:

http://www.leona-ev.de/berichte/kerstin.html

http://doxiades.cjb.net

http://ambersitetx.tripod.com/index.htm

http://www.pk-syndrome.org/Phil.htm

http://www.pk-syndrome.org/cases.htm

www.freewebs.com/simonpeters

http://makaylacampbell.tripod.com/story.htm

Todd is a cuddly guy who lives in New York and is 3½ years old. He was diagnosed with PKS when he was 1 year old.

Todd has a fun loving family including big brother Robby who is almost 7, mom Sally and dad David. Sally & Dave are very involved in Todd's school. They feel very fortunate about the help and education he gets. He attends Mary Cariola school and has for almost 2 years!

Todd is learning to sit unassisted and self-feed. He hasn't mastered chewing yet so he goes for soft processed foods. Like the other men in his house he especially enjoys the sweet goodies like ice cream, pudding, and birthday ice cream cake (his personal favorite)!

Todd receives physical, vision, speech, music and occupational therapies. He uses a stander for 25 minutes a day at school. Todd is also able to use a low back Rifton chair since June. He has a Rifton gait trainer at home but isn't very happy using it! He'd much prefer cuddling up with a soft blanket and some stuffed animals.

aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa aa

Spotlight on Todd, con'td

Todd has some hearing loss but loves to hear his Daddy whistle as well as listen to all kinds of music.

Dave & Sally struggle with looking at the future and all the uncertainties that surround them and their care for Todd. They are thankful and grateful for all the members of the support group with the help and ideas they receive.

Donations to the PKS Foundation:

If you’ve been on www.pksonline.org, you’ll notice that there is a link to make a donation to the PKS foundation.  All donations sent to this foundation go to the maintenance of the PKS website, publication of the PKS book and also the set-up of a PKS foundation to help meet the needs of all PKS families.  Perhaps a friend or family member is looking for a good way to help or wants to honor a child in this way!