Osteopenia from steroids-any experience please?

[Used2bthin]

Following a paed appointment for Dd1 who is 9, we had a letter to say we are being referred to orthopaedic hospital for tests as they suspect her limp and worsening mobility problems are due to osteopenia caused by steroid use (she's on steroids permanently as is dependant on them due to genetic condition ) .
This is progress in that hopefully the referral can get us help but does anyone know how this is likely to pan out long term? Will this mean being less active (she's pretty inactive at the moment due to this issue but I had hoped she would improve once they sorted out what the issue was)
Also they mentioned "kyphotic posture" , is this part of the same thing? Her problem is with one leg but the kyphotic thing is because her spine looks curved from what I can gather.
She also has a permanently sticky eye and I am worried it's all related but it's so hard to tell as she's been unwell generally with the condition this year .
Any advice or experience appreciated !

Bump

DD has had long term steroid use and has had similar problems. My dd is active but is a swimmer which, as a non-weight bearing sport left her more open to osteopenia, she is also a poorly controlled asthmatic which left her at risk. Weight bearing exercise and a change in diet helped her but I am not sure if that is much help to you? I know there were medications that she would've been prescribed if needs be. I hope you get some answers. Has she had a bone density scan?

Hi hell , thanks for your reply and sorry to hear your Dd has had similar issues .
Dd1 also does swimming twice or three times a week and it's the only exercise she seems able to tolerate so that's such a shame-she uses a hydrotherapy pool (special school) which may be different , must ask the consultant at the appointment .
Dd hasn't yet had a bone density scan I don't thjnk but does have none age scans and has advanced bone age due to steroids so not sure if that's the same scan.
Did your DD have issues walking? Dds walk is getting worse and worse I am worried we are damaging it more by not knowing what to do to help if that makes sense.
Interesting about diet-I saw that smoking and alcohol needed to go (obviously no issue for dd!) but didn't realise diet changes could help.

I have osteopenia and have been given no advice except maintain my vitamin D supplements

Diet revolved around calcium and vit-D rich foods. DD has had unexplained limps in the past and has knee problems which affect her walking sometimes.

Hi blueberry, can I ask has it affected you in terms of pain or mobility too ?
Interesting about the vitamin d and calcium . Dd is a big cheese fan so that bit shouldn't be an issue !
Sounds really similar hell. It's encouraging to hear that there have been things that have helped a bit .

Difficult to say really I have a non radio graphic ank spond but I mainly have pain in lower spine where osteopenia is.

Thanks for reply. Dd has been complaining of back pain too but also hip and leg pain. I really hope the referral happens quickly as she's been like this a while and its getting worse . Hope you find some relief for it .

Got the referral appointment through today for 4th jan so not long to wait to know more (of course I am now panicking that they have given a fast appointment for a reason! )
I expect it will just be a chat through and then wait for a scan date or maybe they will do that on the day? Would be good to know so I can prepare dd, may phone them