Hi all

I originally posted this in a different section back in November but did not get any responses. So just trying again as I'm really interested to hear about anyone else's experiences in this area...



My DS1 (5) will be undergoing a limb lengthening procedure at some point in the next 12 months or so. He was born with a bow in his tibia and fibula which has since straightened out but that leg is approximately 3cm shorter than the other. The more he grows, the larger the difference becomes, it was only about 1cm when he was born.

I feel an enormous amount of trepidation about this, so much so that I have managed to be pretty much in denial about it for the past few years but realistically, I need to start mentally preparing myself so that I can support my son in the most effective way possible.

Even though this procedure is really important for his health and wellbeing as he gets older, we are still doing this voluntarily and that's the part that just kills me. How do you explain that to a little boy whose favourite thing in the whole world is running around playing soccer with his Dad?

So far we have managed to avoid the built up shoe or orthotic inserts, and DS does not have a limp or anything, so he's blissfully ignorant about it all, which is exactly what I want for as long as possible!

So I am hoping that if there is anyone else out there whose child has been through a limb lengthening procedure can tell me about how you prepared yourself, your family and your child? Also, which method was used for the lengthening (I'm not even sure if there are options at this age)?

Looking forward to hearing of the experiences of any other parents out there.

Thanks so much

Hi,

Whilst I don't have any experience with limb lengthening my son was birn with bilateral talipes (club feet) and have severe tibial torsion which is probably going to end in keg descrepancies. His ortho actually performs limb lengthening proceedures and he has spoken to me about it regarding my DS2 in case it is required in the future. You'll be surprised how your son will adapt. My son has been in plaster for a month and will probably be in it for another couple of months and it doesn't bother him at all.

I hope all goes well for you

Hi Btimes2

Thank you for your response. I get what you're saying: kids are often more accepting & resiliant than we expect them to be.

Are you in Melbourne... I wonder if we have the same ortho?

Thanks again
J

I'm sorry I don't have experience with this either but I wish you all the best. It must be very hard to go through.

I do have a 5 year old with nerve damage to his leg which cannot be repaired though. His deficit is quite slight but will likely remain for the rest of his life. If there was something I could do now to fix it I would, even though it would cause distress in the short term.

Good luck and I hope it all goes well.

Hi Bluesky,

Yes I am in Melbourne. We may well have the same othro..!!

If you want to chat at any time then feel free to PM me. It's good sometimes to be able to somewhat relate to what you are dealing with. I know I have found it reassuring to be able to chat to others who are dealing with lower limb issues.

All the best
Leigh

Thank you Kay1 & Btimes2.

My DH was just saying this morning it must be time we went & saw Leo again (the ortho) & my heart sank. But he's right, DS is 5.5 & we need to get things moving sooner rather than later.

Kay1, your comments helped lessen that sinking feeling because yes, we can fix this & by the time he's finished growing it will all be behind him.

Thanks again ladies. I have more questions but will be back when I'm not on the iPhone.

J