Hi, am looking for people with pffd or those affected by it by being parents or friends/family of people with pfffd in nairobi, so that we can network and work together. Kindly get in touch with me, my email is skinuthia2001@yahoo.com
Hi, I wrote this story before but I think it did not get posted. My name is simon from Nairobi - Kenya. My one year old daughter Ayanna has unilateral pffd, I think its class B of Aitkens classification. I want to appreciate the many stories that I have read in this website, they have been really encouraging. Ayanna will be having an MRI of the hip in a weeks time after which we will see our doctor who will advice on way forward. I have been wondering the earliest age at which lengthening can start and the advantages of doing it earlier or later, Kindly let me know. Am also keen to meet people affected by pffd from kenya or east africa so that we can share and exchange information.
regards
Hello, Ayanna had an MRI done on wednesday 12th May 2010. It was difficult to sedate her, the doctor had adviced on using an oral sedative, this proved not to work as every time she would be put in the machine she was waking up and starting to play. We had to get an anaesthetist for proper sedation. It was confirmed from the scans that the femoral head was lacking and her PFFD was classified as class C. Am yet to see take the scans to our doctor for further advice.
Hi Simon, my daughter will be 2 in a few weeks, she has pffd. She wears a brace and is just like any other child. So far all the x rays have shown no hip bone. However, her doctor has always said that it's too early to tell and that it might be there, but just not show up on the xray or that it might devolp later on. On the her last x ray, he was able to detect something.....or in other words atleast like a head of a bone. He sais that by 3 yrs old it should be clear and final wheter she has one or not. We are located in Canada, so I do not know much about the way thing work in Kenya, but I'll be glad to share my experiances and answer any questions.
Comments
Ayanna's PFFD
Hi, I wrote this story before but I think it did not get posted. My name is simon from Nairobi - Kenya. My one year old daughter Ayanna has unilateral pffd, I think its class B of Aitkens classification. I want to appreciate the many stories that I have read in this website, they have been really encouraging. Ayanna will be having an MRI of the hip in a weeks time after which we will see our doctor who will advice on way forward. I have been wondering the earliest age at which lengthening can start and the advantages of doing it earlier or later, Kindly let me know. Am also keen to meet people affected by pffd from kenya or east africa so that we can share and exchange information.
regards
simon
Ayanna's MRI scan
Hello, Ayanna had an MRI done on wednesday 12th May 2010. It was difficult to sedate her, the doctor had adviced on using an oral sedative, this proved not to work as every time she would be put in the machine she was waking up and starting to play. We had to get an anaesthetist for proper sedation. It was confirmed from the scans that the femoral head was lacking and her PFFD was classified as class C. Am yet to see take the scans to our doctor for further advice.
regards
simon
Hi Simon, my daughter will be
Hi Simon, my daughter will be 2 in a few weeks, she has pffd. She wears a brace and is just like any other child. So far all the x rays have shown no hip bone. However, her doctor has always said that it's too early to tell and that it might be there, but just not show up on the xray or that it might devolp later on. On the her last x ray, he was able to detect something.....or in other words atleast like a head of a bone. He sais that by 3 yrs old it should be clear and final wheter she has one or not. We are located in Canada, so I do not know much about the way thing work in Kenya, but I'll be glad to share my experiances and answer any questions.
yana