hi everyone, My name is amanda and I have 2 children and a husband with pss. The way we came to know this was by accident. My daughter was born with swollen feet and nobody could figure out why. We went to c a genetistsist in Iowa City, and they took blood and found out that she had potocki shaffer syndrom. to this day we still do not know y she has swollen feet. We;ve even gone to mayo clinic to try to figure it out. but still haven't. She didn't walk until she was almost 3 and she is now almost 4. We found out that my husband and son have it by taking blood and getting the information back.. She is still very developmentally delayed. she has problems with her speech and doesn't say very many words. I was just wondering if there is anybody else out there who has this syndrom and have swollen feet. My son does not have nearly as many problems as she does. I would just like to talk to other parents out there who's children have this syndrom.

Hello Amanda: My son is Gabriel (discussed on other page). he is now 2 and 4 months - doesn't walk yet but we hope he will someday. He didn't have swollen feet at any point that i recall. In fact, his feet are quite small for his age. Only size 3 1/2 to 4 (in baby sizes) even though he's more than 2 years old! His hands are small, too. Gabriel doesn't talk yet, does do some signing though. Well, that's not true, he can say mama - he doesn't say it often or use it to greet me or anything, but it is a word i'd say he associates with me. He also says "b" for bread and "m" for more. So, he's getting there! I am glad to hear from you. Janet

hello amanda, my son has pss. he's 10 now. he walked when he was 3. still does not communicate via talking although he knows how to use the proper words when he needs to.. "occasionally"! my son never had swollen feet. but as gabriel above he always had smaller feet for his age. my son loves music a lot. and he communicates more through singing. Lilly

hey everyone, my little girl does have wear a smaller shoe size than most the kids her age but we had 2 buy them extra wide for a long time. we had to buy very expensive shoes wich added up now we can buy her walmart shoes. but she doesn't communicate very well with words either. its weird how my son , who has pss also, doesn't have any of these issues but my daughter does. my sons problems are more due to his adhd. but his speech is very well. its weird how 2 kids with the same syndrom have so many differences in them. when it comes to problems with the syndrom anyway. do any of u have more than one child with the syndrome or have it run in the family

hello, my 7-year old daughter is perfectly normal. does not have pss. i had the genetic test done few months ago and i don't have any predisposing factors/no genetic rearrangements or anything that might have caused the genetic deletion with my son. my husband still needs to do the genetic test to exclude him. we don't have pss as familial in either family (mine or my husband's). what i don't understand how is it possible that your son and husband have pss without any symptoms! may be because the deletion area is smaller! in my son's case the deletion area on his chromosome was quite big. this caused the loss of hundreds of genes, which explains why my son has all his current problems. never imagined that one could have pss and still be normal! lilly.

lilly, My husband is mentally handicapped but until he got diagnosed with pss bcuz when he was about 2 he got a temp of 105 and cuzed him to stop breathing we always thought that that's what caused it. Now that he's older he's not as behind as some. My son is on a iep, and does have some learning problems but met all of his mile stones as a baby relatively on time. the only problem he really had was talking but he talks very well now. we do not know wich side of my husbands famiy it comes from bcuz both his mom and his dad had learining disabilities and his father is deceased and his mom refuses 2 believe that there is anything wrong with her. his brother has also refused to b tested or get his son tested. so i guess we'll never know. thanx for responding