Hello-
I found this site the other day and am thrilled to have found it! My daughter, Faith, was born with bilateral PFFD type D. She has had two surgeries to correct issues she had with not being able to completely straighten her legs.
She is unable to walk on her own, she uses a walker, and prefers to crawl in our house.
I'm so excited to have found so many people with the same condition and have soooo many questions. My main question is about independent walking. Faith's surgeon seems to think that she should be able to walk and given enough time she'll figure it out. He's not here everyday to see her struggle through PT sessions and struggle to keep up with her twin brother. It's not that she doesn't want to she really just can't. We haven't given up hope at all I'm just wondering what other's experiences are.
My other main question I have is about future treatment. What are the options? What have people done...or not done?
Any and all information would be wonderful. Thank you so so much!
Candice
Hi Candice~ My name is Sara
Hi Candice~
My name is Sara and I too just joined this site a couple of days ago. My "blog" is BFFFD class D w/questions. I would love to answer any questions you may have to the best of my ability, I am 34 yrs old and so I have been through years of "stuff" :) However, I have to say that I have been fortunate enough that i have had only one surgery do to complications w/PFFD but that wasn't until I was in my 20's.
Hope to talk with you soon
Sara
My question to you is where
My question to you is where are you taking her? I take my daughter to Shriner's Hospital. You have to get a referral from a shrine to go there but I can get you one. Where do you live? Shriner's specializes with this condition and they do PT with the child at the hospital, which is great. I would suggest you look them up on the internet and see where the closest one is to you. Let me know. Just a little note: children with PFFD quailify for SSI disability
Shriners
Hello-
We were refered to Shriner's and took Faith when she was just a few months old. We were told that for bilateral cases their standard of care is to do nothing. They offered us assistance when Faith was older and we do take advantage of their services and Faith gets her shoe lift through them. We are in Illinois about 2 1/2 hours from the Shriners in Chicago so going there for PT doesn't work. After we were told that they would do nothing for Faith (and her legs were severely contracted and she couldn't straighten them) I came home and searched the internet and found Dr Paley in Baltimore. We have been with him since Faith was about 6 months old.
Candice
Hi there~ I am 34 years old
Hi there~
I am 34 years old with BPFFD class D. How old is your daughter? And what type of surgeries has she been through? She will learn what to do in her own time and in her own way. I know that it is frustrating and unfortunetly the answers are not always cut and dry. We have all been through this and your daughter will continue to get stronger. Feel free to ask any questions.
Sara
smo4474
another option...
Candice,
Another option is to contact Dr. Paley in Baltimore, MD. and see what his thoughts are. You can contact him at 1-800-221-8425 and see if you can mail him a set of xrays to look at to give you a verbal consult over the phone. This is the doctor we chose for our daughter McKenna and 2 lengthenings later she is doing just fine. Each case is different though, so you will want to chat with him directly once he has the xrays in front of him. Please keep us posted!!
Sincerely,
Chuck, Karla, Dylan & McKenna
Reply's
Thank you all for the great advice. To answer some questions.
We were referred to Shriner's in Chicago when Faith was born. The doctor said that for bilateral cases of pffd their standard course of action is to do nothing. They would help with (and we do go to them for) a shoe lift or any other adaptive equipment. Since Faith's legs were severely contracted and she couldn't straighten them I was disappointed and came home and got on the internet and found Dr Paley. We have been his patient since Faith was 6 months old. She has had two surgeries to straighten her legs. She still can't walk independently and Dr Paley thinks that she will given enough time. I'm concerned and curious if this is a reasonable goal and even if she can take a few steps is it really appropriate to expect that she will be able to walk long distances???
Once again thanks for the thoughts!!!!
Candice
Reply to Candice
Hi-
Great to see you posted here on the website. I am excited to share more about our daughter, Lilly with you and learn about Faith too. Lilly and her friend, Maya, are actually in People magazine this week featuring PFFD (class D) and their friendship. I would be more then happy to mail you a copy. Just provide me your address and I can go ahead and do so.
I would also like to give you our home phone number 507-787-2259. Feel free to call and talk anytime. We would love to meet others out there too. Being in People magazine we were hoping that it would open the doors to meeting kids/teens/adults with PFFD. Please call or email and we can share…
Lilly is 6 now and will be in 1st grade this fall. She is in swimming lessons now and also dance and horseback riding lessons. In the winter she also takes on downhill skiing. She is not letting anything stop her. She is a fun big hearted girl that loves people.
She has had ZERO surgeries and uses a wheelchair and crutches and also walks on her own. We were told she probably wouldn't walk and suggestions on surgeries and such, but waited it out. We will see what the future holds, but for know this is working for us.
I hope to keep in touch!
Love,
The Stiernagle's
Love,
The Stiernagle's
bpffd
Dear Stiernales,
I have read the article in peoples magazine.
Good for you that you didi not doctors on Lillys legs.
As long as she not in pain no surgerys please. I know what I am talking about. Maybe you saw my pictures on this site.
Maybe, as she gets bigger and havier. she wil need lightweigt carbonfiber 'boots' so that het weigt rests on the boots end not on her lower legs. I think however that will not be necessary.
I never needed any orthopedic assistance.
Maybe you can post some pictures of your litle girl.
Regards,, Steph Z.
Walking with leg length discrepancy
NC Mom
My situation is different, Nicholas has unilateral pffd. But here is our walking info:
Hi My son had about 2 inches difference when he was 15 months old- when he began walking, he now has about 4.5 inches at age 4 1/2. He does walk and has been walking. I never would have believed he could walk with such a difference in leg lengths! He can walk quite well now without the shoe lift, at age 4 1/2 even. We have a shoe lift for him now- to help him walk faster and straighter and to prevent an aching leg.
I wonder if you can take away the walker (which might be too convenient) and see if that would motivate her to try to do it on her own (starting by cruising etc)....the other issue could be muscle and hip and ankle stability (or something) which is preventing her from bearing weight by walking....I don't know....the walker certainly would be helping bear some of the weight, and might be preventing the muscle strength to occur more quickly? Perhaps you could limit the walker even to morning or evening times and see what happens? I'm not in the medical field so I don't know specifically what to say......
walking
When I have a patient come into our office that isn't using a walker when they should be gets what is known as " tara's talk " I am not a doctor but i am a nurse/ medical assistant. I sit them down and we have a long discussion of pros and cons regaurding walking with and without assistance. In the long run the things that matter most are safety, and health improvements. This should be the same when it comes to trying to motivate her to use her ambition and not the walker. First off the muscles that she has or underuse can get very sore very fast! Imagine running a 5 mile marathon without proper hydration and no stretching. Now go out the next day and try to do the same thing. I promise that you won't be able to without collapsing and having extreme muscle fatigue. If your daughter looks like she is having a hard time the truth is that she probably is. Concentrating on the fact that she is trying to do a task that is not fun and over all can leave her sore will not motivate her in the least either. My suggestion would be to have her help you set up a goal shett for a month at a time. Each day there would be a different goal/ game theme for the day. Shake it up and make it fun for her. Does she like playing ball?, If so have day 1 be to gently roll a ball back and forth for 15 mins. Accidently roll the ball just out of her reach and see what she does. (not a mile out of her reach but more like a foot or two). Each time she walk or takes steps without the aid of her walker she will be strengthening and toning different muscle groups than those that she uses with her walker. Keep the first couple of days shorter so that she can slower taper into longer activities. Make sure that they are fun, involving for her and possibly any siblings if she doesn't desire the one on one attention. At the end of each week tally up the activities that she successfully completed and have a reward based on the amount of activity. This may make the hard job of training those muscle more positive and rewarding. Let me know if this helps!!
kaylas proud mommy- Tara