Hi Booboostwo. My DS had bone lengthening which started just before he was 7. He had a short tibia and has no fibula, so the tibia was lengthened.
How old is your Dd?
I can't pretend it wasn't daunting, but actually once we got started it wasn't as bad as I had feared it would be. DS was off school for a few weeks, and then went back to school in a wheelchair. After the fixator came off he then spent more time in plaster on crutches.
He coped quite well with the frame. However the regime is time-consuming. The pin-site cleaning must be done every day and you have to go through a whole sterile procedure - it is worth considering how you will do this if you have other young children. At one stage pin-site cleaning was taking about 45 mins all in (he had a lot of pins) and once you have started you can't stop and touch anything non-sterile - so tending to toddlers, for example, is out!
Pain management: as you go through the lengthening it is the soft tissue that is coming under strain. The new bone grows quickly but the soft tissue is being pulled. DS managed well on paracetamol, ibroprufen, codeine at night and at one stage amitriptyline. You can slow down the lengthening if the pain is increasing - your consultant and / or specialist support nurse will talk you through this.
It is very effective. DS grew 6.3 Cms of bone, and was back leading an active life soon after. Though there have been many smaller surgeries to correct ankle position etc.
He started off with the frame from below the knee to ankle and some pins though his foot. Then an additional ring went above the knee for some reason, then it was all reduced to a frame just between knee and ankle. So four surgeries in all, though only the initial operation and the putting on of the additional top ring involved overnight stays. The rest were day surgery.
There will be a lot of physio. She will need to do physio at home every day.
You will need a bath seat - or to talk to the physios / occupational therapists about how you manage at home. They gave us some metal ramps to use at the front door. He was able to get upstairs sitting on his bottom to begin with, and then on crutches.
I don't know how active the forum on the STEPS website is - there might be people there who are going through it too.
It's a big thing for parents. DS's initial op was 5 hours long. It is tough. Tough for the kids too, but most seem to manage very well and just get on with it.
Which hospital will do the procedure? We were at Kings in London and they are fantastic.
There is a lot of hospital visiting - regular clinic and consultants appointments. Do you work f/t? I reduced my work contract and was luckily able to work flexibly.
Do ask me anything you want, or PM me.
DS will have another lengthening once he stops growing, as the discrepancy has grown again since he has grown up.