Please come and tell me about Juvenile Arthritis

[Al1son]

DD2 is 7 and being assessed for ASD/SPD/OCD. She has had very painful hips for a couple of months. We had a very unpleasant day at our local children's hospital this week and have to go back in a few days to see a rheumatologist and an eye specialist.

They think she could have Juvenile Arthritis. She's in a lot of pain in the mornings which seems to improve but not go away as the day progresses. She doesn't always react to pain so for her to show it this much I think it must be very bad. She says it's about 9 out of ten.

This morning she couldn't get up so we've given her breakfast in bed so that Nurofen has time to work before she has to move.

It getting really hard to see her in so much pain. Can anyone let me know what might be in store for us please?

Also any tips on making things easier for us would be gratefully received.

I've just gone to get her up and she keeps falling asleep mid conversation. She says the pain kept her awake in the night.

She's missed so much school because of her ASD assessments I don't know whether to make her get up and go in or let her sleep and send her in later

Im assuming it's Juvenile Rheumatoid Arthritis? I had this as a child and was diagnosed aged 8 or 9.

This is an auto-immune condition. I remember being very sleepy and in pain, particularly when first diagnosed. I was sent to school every day but not allowed to do PE. In hindsight being sent to school was good as it took my mind off it, but encourage your DD to exercise as this will help. (At the time exercising was controversial but since proven to help)

My JRA lasted until I was 16 years old. It is common for it to disappear somewhere in the teens. I was told that I may get RA back from middle age onwards. I got my first flare up after DS2 was born (I was mid-thirties) as having children can be a trigger but 2 years later this has died down.

Warming her joints will help. I used to soak my hands in warm water every day to ease the pain. Perhaps make time for her to sit in a warm bath on a morning to help her hips? Once my joints were warm it is easier to move them and the pain is not so bad.

Send a note to her school so they are aware of the situation. If she's struggling at school they'll let you know.

My medication was always prescribed so can't advise you there. Hope she's ok.

Thatnks spider. They haven't mentioned the word rheumatoid but maybe the rheumatologist will tell us a bit more when she goes back.

It's useful to hear from someone who has been there themselves. Would you let her stay in bed until the Nurofen has started to work or just make her get up and into a warm bath straight away? She woke up at 9.30 and the pain was still significant but lots better than earlier. It seems like a good way to deal with it but I'm not sure I should do that every day.

I could wake her for the Nurofen earlier but she has to eat with it because it's a high dose so she'd need her breakfast before 6am. She already has sleep issues due to ASD so needs her morning sleep.

My daughtter is 11 and possibly has this as well. She has been prescribed ibuprofen to take.
It's difficult because the school don't really seem to understand it all. There is a website which has a forum for parents called arthritis care that is useful to have a read through.

Warming the joints will relieve the pain temporarily. It's usually worse on a morning. So you can do this before she takes her Nurofen (or while she's waiting for this to work).

An alternative is those bags of wheat(?) that you can warm in the microwave. As long as it's not too hot it will do the same thing as the warm water. That way she can stay in bed longer! This also may help her on a night when she's trying to sleep.

Thanks both.

Will Google Arthritis Care now and go and dig out my lavender wheat bag. Not sure about the bath idea. Our house is very cold and she sleeps in PJs and a fleece sleepsuit so is always toasty first thing anyway. She'd probably get colder having a bath. I could easily wake her with a wheatbag which could help if she'll let me put anything near her hips.

The GP just rang back and he's going to contact the children's hospital and also prescribe some additional pain relief.