My 10 year old daughter

julie1

Please help, my 10 year old daughter has JIA - diagnosed just over 12 months. Currently on methotrexate by weekly injections, had many steriod injections, and did take methotrexate tablets untill rencently due to continued inflammation in her joints. This week for the first time since diagnosed, due to pain and stiffness in both ankles, she couldn't walk, I had to keep her off school. She is too big now for me to carry her, she has to slide down the steps on her bottom the get down the stairs. Does this happen to other patients? Going to see her consultant next week. Do kids get any form of aid to help them walk/get round the house for the bad times??

helpline_team

Hi Julie,

It sounds like this is a really nasty flare up. If things are that tough you can ring the paediatric rheumatology nurse specialist and ask them to ring you back. I realise this must be very frightening for you all. The key is to get the paediatric rheumatology team to see just how concerned you are about your child.

Yes there are things that can be done by occupational therapists to adapt your home to make it more accessible to a child that is disabled. Some families opt for having a downstairs accessible loo / shower room with a pull down seat in the shower, so that it's easier for a child during flare ups. A ground floor bedroom too can be an option - or a day bed/sofa bed for difficult times.

In the short term you need to find out how much longer do you need to try the current medication for before other drugs might be offered, and whether any top up meds are available in the meantime.

I wonder whether you've got the detailed book 'kids with arthritis' yet? because it's a bit help. If you want us to post it, just email us with your full name and postal address, to Helplines@arthritiscare.org.uk and mention that you have already been in touch with us here on the forum. please.
u
I hope we can be of further help - just ring if you'd like to talk about things.

all the best

Guy

julie1

helpline_team wrote:

Hi Julie,

It sounds like this is a really nasty flare up. If things are that tough you can ring the paediatric rheumatology nurse specialist and ask them to ring you back. I realise this must be very frightening for you all. The key is to get the paediatric rheumatology team to see just how concerned you are about your child.

Yes there are things that can be done by occupational therapists to adapt your home to make it more accessible to a child that is disabled. Some families opt for having a downstairs accessible loo / shower room with a pull down seat in the shower, so that it's easier for a child during flare ups. A ground floor bedroom too can be an option - or a day bed/sofa bed for difficult times.

In the short term you need to find out how much longer do you need to try the current medication for before other drugs might be offered, and whether any top up meds are available in the meantime.

I wonder whether you've got the detailed book 'kids with arthritis' yet? because it's a bit help. If you want us to post it, just email us with your full name and postal address, to Helplines@arthritiscare.org.uk and mention that you have already been in touch with us here on the forum. please.
u
I hope we can be of further help - just ring if you'd like to talk about things.

all the best

Guy

Many thanks for your help, I will get in touch with the nurses - you just don't always know what to do for the best! Thanks again.