Bone-lengthening - sudden pain. Any experience?

[Blu]

DS, 7, is a good way through bone-lengthening of his tibia (3.5mm so far) and has been progressing v well - no problems with physio, and over the last couple of weeks the pain has been very well under control / absent.

Suddenly last night he developed knee pain severe enough to make him cry. We had to revert to the full painkiller drug regime, and it is still painful this mortning. Much worse when he straightens his knee or tries to stand on it.

he did do quite a long walk on his crutches yesterday morning and then spent the afternoon in his wheelchair / on sofa - could it be a sprain / strain? Serious stiffness?

I am dreading knee-dislocation, which I know can happen in lengthening. (he has no fibula).

We have the personal mobile number for his specialist nurse, but don't want to disturb her on a Sunday if it's not serious. We are seeing her tomorrow afternoon anyway.

DP wants to take him to A&E to check for knee dislocation.

Any advice?

It might be that he has overdone the walking, how is he when lying down? We have been told that any pain that comes on suddenly is most likely an infection, how are his pin sites looking? Any redness or is the skin hot?

I would call the nurse to check, she sounds like she trusts your judgement if she has given you her personal number.

No experiance of this, but do you feel it warrents the call? - your his mum and know him best.

I would call espeically as he has not been in pain previously or you have been able to control it.

I hope it is not the knee dislocation

Hi Montmorency, thanks TMH,

It isn't pin-site infection, I'm sure of that - his pin-sites are absolutely fine , and the pain is definitely in his knee. No heat, or even swelling.

I think we will text the nurse...DP is all for taking him to A&E, but I think a text to the nurse is a first step....

M - have you experienced a pin-site infection yet? Thankfully we haven't, but I'm learining that there is no such thing as being able to breath a sigh of relief that all is going well....it won't be over til the fat lady sings, that's for sure.

He's not too bad when lying down and / or has knee a bit bent.

We have been told that he must spend as much time as possible with his knee as straight as possible.

That sounds good that it is better when he is lying down, but to be honest I have no idea about knees! I hope that the nurse has some advice for you.

No infections yet (touch lots of wood), but the 2 children in hospital at the same time as DS both have had infections. 1 was in for a week in hospital on IV antibiotics, and 1 has had 2 separate infections. I read somewhere that 40% of people get them, and at our last appt the Ortho seemed to expect DS to get one soon.

yes, the other child undergoing lengthening with the same consultant who is a couple of weeks ahead of us has had a few infections. He has beenswimming a few times...I am highly suspicious of swimming in a public pool, and we won't be doing it, I think!

I have exchanged texts with 'our' nurse and she suspects overdoing it yesterday and advises rest, elevation and painkillers til we see her tomorrow.

Boredom, frustration and hot day are adding to the misery for DS, of course.

How are y9ou coping, day to day, Montmorency?

That is good news, I hope resting today will improve the pain.

Public pools are definitely not a good idea! The physio said that it is too high a risk for infection (as well as baths at home compared to showers).
DS is starting hydrotherapy next week, which is a bit nerve-wracking seeing as we have avoided infections so far, but the physio has said that the benefits outweigh the possible risk. I am still worried though!

Day to day, we are managing well, thank you. DS had limited mobility before, so hasn't had a huge adjustment, which I can imagine is one of the hardest things to handle. He started weight bearing on Friday, and can press 15lbs of pressure down with his toes, very exciting! He can hop 20ft with his walker which has helped a lot at home. Pain wise, he is on constant medication but apart from that is ok. Apart from yesterday when he got far too hot!

How are you finding the summer holidays?