If you are new to PFFD - I recommend starting with the PFFD book

Kyle

Sat, 01/27/2007 - 15:20 — debbie

Kyle is my twin grandson with multiple disabilities, PFFD, with no hip sockets, severe short stature, pierre robin with a cleft palate, g-tube, tracheostomy. His twin brother is normal, they were born 3/30/04. Kyle's thigh bones, is only 20%developed and he has no hip joints? We are suppose to been seen in Maryland for a pediatric orthopedic consult.

djmetz@optonline.net

New possible diagnosis

Fri, 01/26/2007 - 17:47 — princessig

Hi Everyone,
I seem to be posting more and more on here. I just heard back from my genetics counselor today. She sent my daughters tests, info and xrays/us to a doc who is supose to be the best in WI for skeletal dysplasia. He said from what he saw the he feels she could have something called Kyphomelic Dysplasia. Has anyone heard of this? I have an appointment in February to go and see the genetics again and the genetics doc is going to run some more tests on her to see what is going on. This dysplasia is a one of the femurs but everything I read seems to tell me that it is also followed by other things that she does not have. Aside from the short femurs she has no other issues. I have a question for mom who kids have the PFFD. When did your child start to crawl and walk? Were they born with hip dysplasia or is that something that just kinda goes along with the PFFD? My daughter is starting to try and crawl (I think) she will push herself up on to her knees and kinda rock or just thrust forward. But what is odd is that she uses the better side to anchor herself and will push more with the more affected side. As usual any info will be appeciated. You all are great I have gotten so much info from here and I am in contact with Dr Paley I just have to get my info to him.

tom now

Tue, 01/23/2007 - 16:11 — hippichicki

a photo of the cheeky one! in his sister tent!

Tom is at school!!!

Tue, 01/23/2007 - 16:06 — hippichicki

Just a quickie update, and a happy new year to you all!

Tom is now nearly five and is settled at school, (it took a long while!!!), and he is enjoying it very much,, he is THE most popular child in the whole school, of which im totally blown away, i was dreading school and bullying etc(i think most of us do!)
He is even doing PE and climbing on PE aparatus and dancing,but he doesnt like this very much as he says he looks stupid all the boys do!!
He keeps his extension on, and he knows his limits, there arnt many though, he tries it and if he cant he will try again before he resigns to it.

New born with Bilateral Hememila

Wed, 01/17/2007 - 14:57 — gino

Hi Everyone.
We are parents of a new born who was born with bilateral hememelia. 3 digits on right foot, and 2 on left. The right foot has a heel bone, the left does not at this point.
We are going to BC Childrens hospital in a few weeks to speak with a specialist about long term forcasts, possible amputations etc etc...
Knees and hips are normal.
There isn't alot of information or support out there, so please, if you can help out, any information would be greatly appreaciated. Send your email and I will respond.
thanks Gino/Katherine

Super Hip Surgery

Wed, 01/17/2007 - 11:16 — princessig

Hi
I was wondering if anyone can explain to me what a super hip surgery is. I tried to google it but no luck.
Thanks
Wendy

Arizona doctors, pffd and congenital hip deformity

Mon, 01/15/2007 - 00:10 — chase

Hello

I was curious if anyone knew of any doctors in Arizona that perform the super hip surgery or limb lengthening surgeries? My son Chase will need the super hip surgery this May, and we are hoping Dr. Paley will be performing the surgery. We have been seeing Dr. Paley since my son was six months old, and he will be turning two years old this March. Our insurance company is giving us problems covering the costs of his surgeries since it is out of state, and is determined to find a doctor in AZ to perform the surgeries. We do not feel comfortable sending him to just any doctor. From what I hear, Dr. Paley is the best!!

Her Diagnosis just doesn't seem right to me

Mon, 01/08/2007 - 01:34 — princessig

Hi All
I am glad to have found this site and have been reading all the stories and looking at the pics of all these cutie pie babies. So I thought I would share my story and see if I could get any input.

My daughter Isabella is now 5 months old, almost 6 mo. She was born 2 months early and I knew before she was born that her femurs were short. At my 22 week US it showed that her femurs measured at 16 weeks. They sent me for level 2 US, and it read the same short femurs. They were consistently behind but showed growth. My last US lasted over 1 hr and was painful. And she was born about a week after that. Even at that appointment the doc tried to convince me that I should consider not having the baby. That she could have all kinds of problems besides the femurs. Needless to say I listened to myself and others and to God and had the baby. She is beautiful. Her legs are little and it is just the femurs. They xrayed her at the hospital that she was born and their conclusion was that her femurs were broke. She was also born with a cracked rib. But they said that she would be fine that there were no other problems and to see a specialist. She was in the NICU for a month and 3 days after she left we were at Child. Mem in Wisconsin.

PFFD: 
General Discussion

Question about car seats with Spica cast

Wed, 12/13/2006 - 23:33 — Jen W.

Hi everyone. My name is Jen and my son, Luke, has PFFD class 1b(Dr. Paley classification) in his left leg. He is 17 months right now and although this is my first time actually writing on this wonderful site, I have to say THANK YOU to all who have shared their stories b/c it has helped me out tremendously!!! I absolutely crushed when he was born and we found out about his leg. I cried for 2 weeks straight and then I realized that this was not the end of the world. I have been reading entries from this site for the past year and all of these children are such inspirations!!! Luke will have an estimated 28cm.

Ryan's photos

Thu, 12/07/2006 - 18:03 — m cushen

Hi my name is Michelle. Im from Dublin Ireland. My son Ryan has PFFD in his right leg and he is four. i have read alot of your stories and how some of you have alot of trouble finding trousers for your children. The prosthesis Ryan has his foot doesn't point outward it points down and i find its alot better for his balance and i dont have to worry about finding the right clothes for him. I really hope this information is useful.

Pages

Subscribe to PFFD VSG2 RSS

This site is to support people with PFFD. This site is created and hosted by JEO.NET. Privacy Message