Hello everyone! I have an 18-month-old daughter with congenital short femur. We have taken her to several different Dr's , including Paley in Baltimore. Currently, three of the Dr's we have seen
recommend waiting until she's older (6 or 7) to do the first lengthening (she will need a total of 2 lengthenings). Paley recommended doing it by age 3. Our daughter functions very well with a
3cm shoe lift and doesn't have any other problems other than the short femur. Does anyone have any experience or know the advantages/disadvantages of waiting to do the first lengthening vs. doing it sooner? Anyone started the lengthening process at a later age (6 or older) and has had good results? Thank you for your comments!
Re: Lenghtening now or Later?
Hi,
Since I've just updated the site, the Personal Story section (http://www.pffd.org/blog) is not showing all the personal stories - just the first one. But you can find others who have done lengthening here: http://www.pffd.org/profile/pffd_treatment/Lengthening
and from there get to any personal stories they have shared.
We haven't done the lengthening but one thing that seems to be very important is the mental development of the child having the lengthening. You might want to think about the mental stage of the 3-year-old and how that would affect the long-term outcome. After (a) reading many of the personal stories over the years and (b) Payley's statement that he no longer does lengthenings between the ages of 4.5 and 6. (See http://www.pffd.org/node/89) because of the mental issues , I'd think about that in your decision process.
Good luck!
Hi. I think this is very
Hi. I think this is very much a personal decision. Each child is so different and some may be very affected by this at age 3 while some may not. So, it all depends on how you think your daughter would handle this situation at age 3 vs. age 6. I think it is hard at any age -- we have decided to start younger rather than wait as to not have the difference become too big and there are also some studies that show that lengthening could stimulate the bone to grow faster post surgery. It is completely up to you though!
Maria
hi
i dont know how true it is but i've heard from a doctor that the lenghtning is better at a later age than earlier since they can only do 20% lenghtning of the short bone so it would be longer at later age because the bone will be longer and 20% of it will be that much long. but no matter what i dont like the idea of waiting 7-8 years for it!
ece
Now or later...
Our daugther McKenna had her first lengthening done by the time she was 3 years of age. In our case we were looking at 3 lengthenings to acheive the 8" to 10" discrepency that they thought she would have. It sounds like your discrepency is less, but you would have to be certain if there were any other issues that needed to be addressed before lengthening. Our first surgery with Dr. Paley was the "super hip" surgery to make sure the hip was in proper alignment for lengthening, and at that time they also straightened the "bend" at the top of McKenna's thigh bone (femur). This proceedure gained us over 1", and gave her better mobility for walking. Also, another quick point to make is that our daughter doesn't seem to have any memory of the first lengthening at all. Which is also a positive. Basically this boils down to what the other circumstances are, and how your child is doing with mobility, and what the discrepency would be by the time your daughter reached 6 or 7 years of age. The maximum length we have been able to get during a lengthening with out too much trouble has been about 2.625". The second lengthening got us around 2.500", and combine those with the first 1" we gained from the super hip we are now just over 6" of new length. So if the discrepency would be larger than 2.625" by her 7th birthday you might consider trying to start earlier. Could you share with us any information the doctors told you about if you have the standard "bend" at the top of the thigh bone, or if there is any issues with the knee or hip?? And what is the total discrepency that they are predicting?? This info. might help us to share our thoughts on what our opinion might be. Thanks!
Chuck
limb lenghtning
hi i have a 4 months old son who has pffd on right leg. i've heard about Dr. Paley and im sure he is the best according to the doctors in turkey. we've seen some another doctor on thursday and he said if he needs the surgery he wont be doing it until he reachs 7-8 years old. thats messed us up but Dr. Paley does it age 3. we ll probably see him but i have some question confusing me a lot. our doctor said if the muscles are damaged or missing on the pffd leg they wont be able to do the lenghtning surgery on him. x rays doesnt show up yet so we have to wait till month 8th to see bout that. is it possible? is there any way to fix if we have this problem? did you hear any info about the ability to have the lenghtning surgery from Dr Paley? im just so affraid of not being able to do lenghtning bcoz i dont like any other option that dr told us. thank you so much for any info