Ir doesnt seem like a 'real' special need, as it should only last 2 years, but dd2 has got this quite severely and we are having to stop her running, jumping ond walking for 1-2 years until he rfemur heals.

Just wondered if anyone else here has experince with this,

Welcome Weegiemum! Sorry to hear your DD has Perthes. My DD has hip problems too (not Perthes though) and it's not easy when activity is so restricted. Is she allowed to swim?

My nephew had a diagnosis of Perthes about 3 years ago, spent a year and a half being treated and unable to do sports. (He is nearly 13 now). He seems great now, but he is under a Consultant (East Anglia) for regular checks.

If you would like any more info pls feel free to ask - I can double check any facts with my sister!

Best wishes

Hi, have you tried Steps Charity? They have forums for lower limb disorders, lovely bunch on there, I'm in the DDH group.

Hi, have you tried Steps Charity? They have forums for lower limb disorders, lovely bunch on there, I'm in the DDH group.

Thanks for advice, I'll have a look at Steps.

Yes, she can swim (both in is allowed to and it a really good swimmer as well!) so we have been going 4-5 times a week. Playing havoc with our hair, but good as at least there she is allowed to jump.

We are really luck that she is a) under 5 b) not overweight and c) not ADHD. But not so good as she has 90% femur head involved - basically the whole head of her femur is flaking off and on x-ray we can see a fracture right across the top of the ball. Also she is a girl, and therefore has a worse prognosis.

I feel a bit bad posting here as she doesn't have a permanent special need, it will get better in the end. I'm not going through the emotional roller coaster you guys have to be on so often, it is self limiting and will improve as long as we make sure we don't let her move around too much.

Consultant (we are in Glasgow, and as Scotland has a relatively high level of Perthes, luckily he is a real expert) has referred us to OT for a wheelchair or major buggy (would prefer buggy as she can walk a little and I use a lot of public transport. But it is taking ages for the referral to come through. Anyone know how long it shoudl be?

Also, I am concerned about starting school, as she will have to stay in at break and lunch as well as missing all PE - I dont want her to be left out.

Lastly, does anyone have ideas about things to do with a previously VERY active child who now has to sit down all the time, which doesnt mean watching TV or computer games. We have played a lot of board games, She is learning to read and I am thinking of teaching her to make pompoms and to knit (I could at her age). We can do a lot of baking sitting down at the kitchen table.

thanks for being so welcoming to a kind of fakey SN mum.

Painting, drawing, messy play - cornflour and water is a favourite of DD's, playdough - you could make it yourself, I have a recipe somewhere, it's really easy so she could do the mixing, then you just heat it. That new moonsand looks pretty good, I'm thinking of getting DD some of that.

Hopefully, see you on Steps...they have a facebook page too if you are on there.

We are still waiting for OT referral but MIL (who used to work in a Special Needs Nursery) has blagged us a buggy until we can get seen. In fact, as all the children at her old school are now provided with wheelchairs etc, they haven't used the buggies for over 5 years, so they have said we can keep it for as long as we want.

It is great! And much more comfy to push than the baby one (higher handles - I am tall). Best of all, dd2 LOVES it, her special new "big girl buggy".

We are also getting very into making pompoms! That has been very helpful, her concentration is really improving!

I really have huge respect for you ladies dealing with this on a much longer term basis - I did before but even more so now I have just been doing it for a couple of weeks. Thanks for your welcome and support.