10 yr old with Blount's disease/ Ilizarov frame

[naomijoe]

Hi there,

My 10 yr old daughter has been diagnosed with Blounts Disease, which is a rare condition which affects the growth plates in the knees, and results in bowing of the legs. She will have quite major surgery soon , after which she has to wear an Ilizarov metal frame which holds pins going into the legs for six months. The frame looks pretty scary, and carries risk of infections at the pin sites into the legs. I'm also not sure how you deal with clothes as it is pretty large and bulky. I am also really worried about the amount of pain she might experience as the frame both straightens and stretches the leg.

If anyone has experience of either Blount's or these type of frames, I would really appreciate any advice you can offer.
Thanks very much
Sara

Hi Sara

I'm a physio and I spent a year working with these type of frames. They are quite specialist so the hospital is likely to have a lot of support for you.

Your daughter will likely be given a nurse to speak to before the operation and explain all it entails.

It will be uncomfortable but people manage very well with them and pain relief will be looked at very closely. She will be given special pillows to put her leg on at night to keep comfortable.

As for clothes anything loose will do. Or try getting cheap leggings and cut them off at knee level, I have known people cutting the sides of jeans and putting Velcro on to get them on.

Good luck and ask all these questions in the hospital as they will be very helpful.

Hi Naomi,

Sorry to hear about your dd's problems.

My ds had treatment (for a different condition - a v short leg) 2 years ago, and had his leg in a TSF, a differnt version of the Ilzarov frame, but still a fixator, with pins through the bone.

There is no doubt that it is daunting, but DS was 6 when he had his surgery and with help and advice it was fine.

Clothing wise, I got 10 pairs of pants and cut them down the side, then sewed velco on, as it is v hard to pull pants and trousers over the frame. (Actually I took them to the dry cleaner / minor repairs place down the road as velcor is a * to sew! )Otherwise we cut trousers (also velco-ed down the side) off at the knee, or mid thigh, above the frame. Lots of girls we saw in clinic wore long hippy / gypsy style skirts, and maybe legwarmers.

Pin cleaning is a chore, but you get trained to do it, and you can get supplies of all the sterile swabs and saline on prescription from your GP -or ask at the spciliast clinic you will attend. We found soaking DS's leg in salt water for a short time, and then showering before cleaning kept the scabs down, but differnt consultants have differnt views on cleaning - do what they advise.

You will need some help. Getting a wheelchair was one of the hardest things for us, but in the end the Physio service gave us one. Start asking about this EARLY. Before surgery. Also from our local authrity Occupational Therapy Dept we had a bench that fits over the bath which helped with bathing, and portable telescopic ramps to put up to our front door.

It is usually advised that as soon as possivble they walk on the frame as this encourages bone-growth, and ids are amazing at adapting to crutches, but you will have a period where you need a wheelchair.

You may want to contact your cuncil about getting a Blue Badge, too.

They will give lots of help with pain management. Aches and pains come and go, but it was controllable. DS was on a regie of about 4 differnt pain killers, but once tratment was established, he mainly only took them at night. In hospital ask to see the specialist pain management consultant.

You will almost certainly have a dedicated nurse in support throughout the treatment. Ours was wonderful - she gave us her mobile number so we could call her at any time if we needed immediate advice.

The STEPS website has a parents foru which has lots of peolple with experience of children with a fixator.

Which hospital will your dd be treated at?

Also - there will be a busy regime of physio which needs to be done 3 or 4 times a day - the physios are wonderful, very helpful - you should feel very well supported.

Thanks to you both for your really helpful comments - it has been hard finding parents with experience of this in particular - and Blount's disease is pretty uncommon. We're meeting the specialist nurse this week, who sounds brilliant, and hope to meet some more families in clinic :)