9 Year old daughter

nicolag262

Hi am new onto the forum... my name is Nicola and my 9 Year old daughter has suffered from CRMO since she was 3 and as a by product of this disease now also suffers from arthritis. Areas affected are her knees, groin, ankles and is looking like possibly her jaw now too.

She attends dr rooney in musgrave though I am considering seeking further consultation as while there is a big improvement in her compared to her bad crmo days I feel that is all they focus on now in the clinic visits and her day to day suffering is overlooked. She was on feldine though has been taken off with no replacement as we think it was starting to cause breakouts of sore spots on her body.

Really just looking for some info on other people's experiences... doctors seen, meds used. .. diet changes... anything really on how to make life a bit easier for my little girl. Also maybe in some contact with another similar aged kid for emily... we tried pen pal through crmo page but letters never made it from America!

Thanks

stickywicket

Hi nicolag262. I was so sorry to read of your daughter's problems. I'd actually never heard of CRMO but it sounds to be a very nasty disease.

I'm not sure whether the arthritis it gives rise to is an auto-immune one or OA. Most children with arthritis have an auto-immune form and take disease modifying drugs for it such as methotrexate. For OA though the meds are anti-inflammatories, like Feldene, or pain relief.

I hope other parents see this but I thought I'd step in (I'm an adult with RA) because the forums will be upgraded in the next few days so could be down until Thursday.

worriedmum

Hi there,
Correct me if i'm wrong... CRMO - chronic resistant multifocal osteomyelitis??
It's not one i'm familiar with except that my daughter had an episode of osteomyelitis in her wrist at 15 months and then was diagnosed with JIA at 2. Coincidence?
Have a read through some of my posts and feel free to ask me anything about my journey with Freya - she is now 8.
I hope your little one is doing ok - If i can support you in any way I can, i will be glad to do so.
Sam.

(worriedmum)

nicolag262

Hi Sam thanks for your reply..

You are right about the crmo...though it is recurring instead of resistant

Has been a long journey with emily, she started to have problems when she was 3 and initially had all the tests for anything cancerous which thank god it wasnt but then she was in hospital for about 5 weeks straight being treated with antibiotics for what they thought was osteomyelitis. Anyway long story short it wasnt and it took nearly 2 years to diagnose crmo during which time she developed a very abnormal gait which had all the doctors baffled!

She has had pamidronate infusions and steroids to the sites which have so far included both knees and ankles.

So we have been told now that she is suffering from arthritis because her crmo is quite quiet at the minute and I really don't feel we are being given the support or information we need to deal with it. Was in hospital last week getting jaw xray done and they can see something going on there too. As with everyone on here I just find it really scary that my 9 Year old is being diagnosed with such things and want to do more for her but really don't know where to start.

How is your daughter now Sam... is she on any medication and have you made any changes to her diet or found anything that helps?

Thanks again
Nicola x

worriedmum

Hi Nicola,
Thanks for getting in touch. It's a shame you're not feeing so well supported by the team looking after your little girl - arthritis in a child affects the entire family and as such, support should be more readily available to us as parents than it is - i guess that's why so many of us end up here and so i hope you'll find some of what you need comes from people on this forum.
Freya is doing ok, though has a long term ankle problem diagnosed on MRI last summer which is thought to be Osteonecrosis from all the repeated steroid injections and inflammation in that joint. For Freya, her arthritis can move about and affect many joints, lots of which have been injected but whenever she flares, her left ankle is ALWAYS involved. It's a very naughty ankle!! She is on Methotrexate injections and Humira injections, the latter for Uveitis (eye inflammation) which flared when she was four. She also uses Paracetamol and Naproxen for pain.
This week she was given a Splint for her ankle (a custom made, pretty purple one with butterflies on it that she was allowed to choose the pattern of) by the physio and Orthotics team. Hopefully, by locking off any movement in the ankle joint it will reduce the workload of the ankle and let it have a well earned rest and I guess in turn, slow down the erosion of the bones. Early days but feeling quite positive though it's another big thing for her to get used to. Our kids get rather good at that though don't they.
I'd be very pleased to stay in touch and hope you'll have more positive news soon.
Bye for now
Sam. x