[Jude and Paul]

Hi everyone

I just wanted to pick everyones brains. We saw Sams consultant on Tuesday morning and he announced (having said last time we saw him we could wait a couple of years) that he wants to add Sam to his list in 9 months time for a derotational osteotomy (where they break his leg bone and put a plate in) to try and turn his foot out as he trips over it at the moment. Now we were not expecting this decision so rather than quiz him at great length about what would be involved regarding recovery, pain post op, etc etc I just asked really basic questions. Sam is only 5 he will be 6 when they operate and I am terrified that they are going to do this to my little boy.

Is there anyone out there who has had this done who can give me the facts about the operation and the recovery to stop me having a complete nervous breakdown!

Thanks for your help.

Jude
xxxx

[Judybee]

Hi, do feel for you........because we have been there too although when Katie had her teenage growth spurt. She had some muscle transfers done at the same time on her foot. She is out now, but will get her to write when she comes back in.We were in Edinburgh, the pain was managed fantastically well and we were very impressed with how the surgery, hospital physios and our physio worked together.

I found it more distressing watching Katie fallover, but she was able to understand fully what was hapening and how she was going to retrain herself to walk. The end result has been fantastic. Quess if you can harness some reward systems, and are prepared for a long haul! The trouble nowis that your son's leg positioning will get worse and he will feel really bad about that too.............................
Kind regards Judy

[Jude and Paul]

Hi, do feel for you........because we have been there too although when Katie had her teenage growth spurt. She had some muscle transfers done at the same time on her foot. She is out now, but will get her to write when she comes back in.We were in Edinburgh, the pain was managed fantastically well and we were very impressed with how the surgery, hospital physios and our physio worked together.

I found it more distressing watching Katie fallover, but she was able to understand fully what was hapening and how she was going to retrain herself to walk. The end result has been fantastic. Quess if you can harness some reward systems, and are prepared for a long haul! The trouble nowis that your son's leg positioning will get worse and he will feel really bad about that too.............................
Kind regards Judy

[/quote]
Hi Judy

Thank you so much for replying. What I am worrying about is the pain / motivation element. Much as I adore Sam he is a stroppy 5 year old boy and he won't do his normal physio without me sneaking it in without him realising it. From what I have looked at it is a very long recovery with quite a bit of painful physio to get the desired results and I am not sure Sam will do it as he will be too young to understand the long term implications of refusing to do it. We will see his consultant again before he goes on the list I think I need to speak to as many people as I can who have had it done beforehand and go armed with a list. How old was Katie when she had it done ? Is it your Katie who wrote on another link on this site ?

Jude
xx

[JCA]

Hi Jude

My daughter who is 10 nearly 11 years old is having this operation next month.

I asked the Surgeon who is carry out the operation if he could put me in touch with a family of a child who has had the same operation, which he did.

I found this helpful and it confirmed in my mind I was doing the right thing. Do you think this would help you?

I must say it does seem quite young to have this operation but your surgeon may have a reason for this.

Good luck it's not easy being a parent making these sort of decisions.

[Jude and Paul]

Hi Jude

My daughter who is 10 nearly 11 years old is having this operation next month.

I asked the Surgeon who is carry out the operation if he could put me in touch with a family of a child who has had the same operation, which he did.

I found this helpful and it confirmed in my mind I was doing the right thing. Do you think this would help you?

I must say it does seem quite young to have this operation but your surgeon may have a reason for this.

Good luck it's not easy being a parent making these sort of decisions.
[/quote]


Hi

Thanks for replying. I think it would be really helpful if we spoke to a family who have had it done - I will have to ask the consultant when I see him if he could put me in touch with anyone.

Originally he was thinking that Sam would be 10 or 11, then it was 8 after the gait analysis and now it is 6 and a half ish. I believe the reason he wants to do it is that botox is ineffective on Sam as he has little to no muscle function on the outside of his leg so they have no chance of pulling against the tight muscles on the inside of his leg. He is also wanting to take a wedge out of the top of his foot to try and make it droop less. What worries me is that it is quite a big op and he cannot tell me if he will need to have it done again later as his muscles will obviously still pull inwards and once the plate is removed what is to stop it going back again over the course of time?

Best of luck with your daughters operation next month - I hope it all goes well.

Jude
xx

[JCA]

Thanks I will keep you updated as to how she is post op.

Good luck with your decision.