Perthes disease and wheelchair hire

kjmtidea

I have found out today that my son has perthes disease, he had xrays yesterday and I spoke to the doctor over the phone today to get the results, he says that he can't give me any information and I need to wait for an appointment with a consultant at the hospital.

The problem is we don't drive, it's a mile and a half walk to school, the buses are rubbish and being stuck in with 4 kids is not a lot of fun, especially as it is half term now. I was thinking about hiring a wheelchair because even when he is having good days with the pain, after walking a while he is in a lot of pain.

Obviously I am not looking for medical advise but does anyone have any experience of perthes disease? I feel really stuck at the moment because I won't know how bad it is until I see this consultant but what am I supposed to do in the mean time? I can't stay in all day every day and the amount of taxis I have had to get this week with him is definitely not mse :eek:.

I see that you can hire wheelchairs from the redcross, is there anywhere else that doesn't cost the earth? I'm in Bournemouth. Thank you.

mountainofdebt

Hi

Yes I've read the book, got the t-shirt & seen the film on that one.

Junior was 3 when he was diagnosed with the condition and was put in the frog leg plaster - we were told that it was a condition where different consultants had different ways of treating it and each way was equally valid.

Junior was in it for 6 months until he changed consultants due to retirement and then the new consultant took off the plaster and put him on a restrictive movement - ie no cycling but said swimming was OK.

Whilst in plaster he started school, went to a mainstream school and only needed help to go to the toilet - used a urine bottle which helped alot.

Hasn't caused him any physical problems 17 years on though it did cause him some problems when it came to his first choice of career (long story though!)

We borrowed a wheelchair from the physio department whilst he was in plaster and because of the way he was it was a pita thb.

How old is your son?

mountainofdebt

I meant to add that I think being put in plaster is now considered 'old school' so don't automatically think that that's what the treatment your son will have

kjmtidea

Thank you so much for replying, I had never even heard of it, let alone know someone that has been through it. My son is 7 and always on the go so this is really difficult for him, he can't even get dressed by himself, it's like having a baby again!

mountainofdebt

kjmtidea wrote: »

Thank you so much for replying, I had never even heard of it, let alone know someone that has been through it. My son is 7 and always on the go so this is really difficult for him, he can't even get dressed by himself, it's like having a baby again!

Nor had I.

Tbh I think he's going to find the not running around, cycling, playing football etc the hardest if he's that way inclined.

And yes when Junior was in plaster it was like having a baby again. But he coped - he had to learn to walk (ie get his balance back) again - he was even running in the plaster (didn't tell the consultant that though!) and had a set of abs to die for.

meritaten

I would look into getting him assistance to school - would he be eligible for the 'taxi service'? I know of a girl with this, and although she lived less than half a mile from the school they did arrange a taxi for her. I think you need to speak to someone from the local education authority.

mountainofdebt

Have a look at https://www.perthes.org.uk.

They have a forum etc but there doesn't seem to be much traffic iyswim on it.

devildog

kjmtidea wrote: »

I see that you can hire wheelchairs from the redcross, is there anywhere else that doesn't cost the earth? I'm in Bournemouth. Thank you.

The Red Cross is a 'donation' led service and if you are unable to pay then you shouldn't be denied the loan of a wheelchair.

Sometimes they also get wheelchairs donated which are offered 'for sale' for a small donation too.

kjmtidea

Sorry I worded that wrong, I meant that there are other companies online that you can hire wheelchairs from but they are really expensive. I have heard that the red cross are very reasonable.

I just feel stuck in a really difficult place, I haven't really been given any info as I just need to wait for this appointment. I don't want to hire a wheelchair and then the consultant says that he shouldn't be in one but I don't really see a way around it unless we never leave the house again!

Thanks for the replies guys, much appreciated.

valk_scot

Would a wheelchair necessarily be best if it's just for transport too and from places? You can get buggies big enough for older kids, they might be easier to push. Ask at your GP surgery, there's often a community outreach worker that deals with this kind of thing.

margaretclare

Even through 3 years of nurse training, I never heard of it either! It's been in my family too, results in early wear on the hip joints leading to hip replacements at a young age. So, non-weightbearing is absolutely crucial (I'd have thought, but I may be out-of-date).

Yes, hire/borrow a wheelchair. And get what help you can. Maybe arrangements can be made for him to have a home teacher, for a while?

HTH