CRMO?

[Crmomum]

dc has just been diagnosed.
took a loooooong time to diagnose as so rare plus dc's case only affects one bone.

anyone with experience?

I dont have experience with crmo but i know a bit about it, cause they thought my DS4 had it but he has got servere joint pain (Sometimes nothing, something he cant get up sometimes he needs a weelchair) He has to have NSAID (recommeded drugs for children with crmo) He also has hydrotherapy and physiotherapy, regular doctors appoitments (including being uder care of GOSH) He took 3 years to be diagnose SO i know what its like!!
If you need someone for support with docotrs appotments, medcines or just someone who understands PM me.
My son has a few health problems related to crmo as well as traits of it

thank you.
your poor ds, it's shit this uncertainty without diagnosis, isn't it. hope he is well.
I hate the vagueness of it atm and the fact that all the hospital appointments have eaten up all my annual leave

Yes. DD has it.

It took ages to diagnose DD, and they had to rule out cancer first. One of the consultants told me that there are about 40 children in the UK that have it.

Which hospital are you under?

we have been at the portland after our local hospital just ummed and ahhded but not done anything. and been sitting on the mri results for 2 months...

how is your dd? bun which nsaid is she on? ds is on ibuprofen atm but will probably switched to naproxen as it's not improving.

dc is limping and in constant pain and properly pissed off that he can't run/jump.

we hope to be able to go the gosh for the further monitoring.

I'll PM you.

argh can't get dc's prescription as dose measured by weight and that's not available in the uk and chemist has to mix themselves for £££ per week's dose.

sorry for dragging it up again.
dc has been on naproxen for some months now and it's much better.
but the last few days complained about pain again.
can this be because they have a cold?