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Appointment today to find out what's going on with dd's ongoing limp/osteopenia. Trying to think of what I need to ask

13 replies

Used2bthin · 04/01/2016 08:29

I know it's important to write down questions (she has had serious health probs since birth ) but my head is going blank as I'm nervous!
Have had two other threads on this so apologies for repetition.
Dd has had increasing mobility issues since feb but more noticeable since about september . Paediatrician referred her before Christmas to orthopaedics who we are seeing today as she has possible osteopenia from steroids and "kyphotic posture".
Of course it may not be osteopenia , this is what the appointment is for and I am concerned that other things get checked out too as I've found that with her having a long term condition often things get put down to that and it delays other things being investigated.
Any thoughts on questions ?
So far I am thinking I need to ask-
If she has osteopenia what are the long term implications and how much of this is due to her condition being out of control recently?
Mention other random symptoms she has had over same time frame , constantly gunky left eye, midnight diorrhea (will I look bonkers as I know they are random symptoms ?)
She has psoriasis and is this linked?
How will it affect her health and long term condition as it is hard to keep her healthy at the best of times?
Sound reasonable? Any experience of orthopaedics -will they scan or x Ray today does anyone know?

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Are your children’s vaccines up to date?
Wishfulmakeupping · 04/01/2016 08:39

I've not got any experience of that condition but I have been through medical testing for a condition myself.
I think taking a list of symptoms that you've noticed that you're not sure is related or not is a great idea- they will probably ask when the symptoms occur, when they first started and how often so if you know all that add it into your notes too.
If the testing process takes longer than just today's appointment ask them for a timescale when you should expect tests, results further appointments.
Hope your dd gets on ok today Flowers

Wishfulmakeupping · 04/01/2016 08:40

Oh and if you're anything like me you might want to jot down key points of their answers- I always forget as soon as I've left the room!

Used2bthin · 04/01/2016 08:45

Thank you and great ideas will take a pad with me .
Was worried that I would look a bit over the top with the other symptoms but I guess I won't know if I don't mention ! They will see the eye as its all the time though at least.
There is a chance this is down to a mistake that has been made so am being extra cautious too .
Urgh hope we have more answers today.
Thanks again for your input it really helps just run it past someone.

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Wishfulmakeupping · 04/01/2016 10:12

I think they would find it useful even if they don't relate to that particular condition it helps to paint a bigger picture. Hope the appointment goes well OP

Used2bthin · 04/01/2016 10:13

Thank you.
Managed to film her limping downstairs as I know she will refuse to walk when being observed!

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Used2bthin · 04/01/2016 19:25

Dd had an x Ray and the Dr confirmed osteoporosis , also said she has very tight hamstrings and discussed casts for this.
Not feeling happy as its still not great news but I think could have been worse

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Wishfulmakeupping · 04/01/2016 22:01

I'm sorry it wasn't as positive as you might have hoped for but knowing what the condition is means you can start getting better support and treatment for your dd. let the news sink in for a few days be kind to yourself OP- hope your dd is ok Flowers

Used2bthin · 05/01/2016 08:20

Thanks wishfulmakeupping.
Apparently there was a far more serious condition they had thought it could be so it is good really just a bit depressing to have one more thing affecting her.
Thanks for your help .

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BumWad · 05/01/2016 08:22

Definitely mention the psoriasis. Can be linked to bone conditions

BumWad · 05/01/2016 08:23

Sorry just read your update.

Used2bthin · 05/01/2016 15:01

Hi bumwad (great name!)
Thanks for your reply. I have just realised I actually didn't mention the psoriasis but at least we have a follow up apointment booked so will do then.
Odd episode of watery diorrhea again last night which keeps happening so will book a GP appointment soon too about that . The consultant didn't feel that the eye thing was related though.

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BumWad · 06/01/2016 13:40

Have a look at psoriatic arthritis, I think it can affect children too but not 100% sure

Used2bthin · 07/01/2016 13:19

Thank you I looked at it and the eye thing is a bit worrying as it has been an issue the same amount of time as the mobility stuff .
Had an ENT appintment tues and they have referred her to an eye specialist as the ENT dr thought it looked like it may be a blocked tearduct .
Gp thinks the midnight diorrhea is most likely constipation /overflow (lovely I know!)
I guess the orthopaedics Dr would have known if it was arthritis as opposed to osteoporosis but it is all a bit odd how it all started at the same time.

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