JIA and muscle weakness

burntash1726

Hi I am hoping I'm not alone here. My 5 year old daughter has recently been diagnosed as having JIA after 4 years of arguing with doctors. November last year she has a major flare up which caused her to be hospitalised for just over a week. They run standard tests on muscle function and her joints etc and said it all seemed ok but they suspected arthritis in joints. Almost a year on and having seen her rheumatologist recently have now been told that yes she has Jia but her muscles have become profoundly weak throughout her body please help is this normal?

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. I don't know if it's unusual but to me it isn't surprising: if the JIA is fairly widespread then I suspect she is (and has been) in pain which tends to restrict how and how much we move leading to muscle wastage. In your shoes I would ask for a referral to physiotherapy so a trained physio can assess her and maybe devise a plan of action to bring some strength and tone back. Our muscles need to be as strong as possible to help better support our joints, I hope you can get some help with this soon. DD

burntash1726

Hi thank you for your reply...my concern for my daughter is that they believe the bone at the back of the ankle is starting to fuse what ever that means. She has arthritis in her ankles and knees so it doesn't explain profound muscle weakness throughout her body. She has been having hydrotherapy and physiotherapy twice weekly for nearly a year and her muscles have gotten worse since we first started....I'm at a complete loss this has been going on for years now and every time we seem to be getting somewhere I get thrown back in the deep end. My daughter falls over a lot and often it'll be when going up or down stairs but there is times she will be stood there and without moving end up on the floor x

dreamdaisy

I am not a parent or a doc but something is amiss because it is very strange that a child of this age is having these muscular troubles. If the hydro and physio isn't helping then surely further investigation is required. I feel for you very much, sometimes parents have to push far too hard to be heard.

I know that bones fuse - the joint loses flexibility and becomes fixed which can lead to a reduction in pain but again, this is an odd occurrence in one so young. DD

burntash1726

Thank you at least I'm not the only one that seems to think there is something else other than just jia x my poor daughter has undergone so many different tests over the last year and yet I still feel like there missing something

stickywicket

I'm so sorry your little lass has had such a tough start in life. You, too, must have been going through the mill for far too long.

I have several fused bones but that's because I've had RA for over 50 years and the treatment, in my younger days, wasn't too good. I think bones fusing in one so young is unusual and I, too, would be concerned if a year's worth of hydro and physio were apparently having no effect on the muscle weakness.

You don't seem to have a lot of confidence in your docs and why would you? Children should be fast-tracked, in my book anyway. You can always ask for a second opinion or to be transferred to a different doctor. Teaching hospitals are usually, but not always best.

What medication has your daughter had?

There is no doubt that arthritis can be a wily beast but I think your concerns are justified and you need your questions to be answered.

burntash1726

So far she is on naproxen paracetamol lansoprazol and had joint injections on real bad days she has codeine as well. I am seeing her paediatrician tomorrow so going to ask him some questions. Her rheumatologist has referred her for a senior physio consultation and occupational health referral. She is awaiting mri on her ankles and knees and blood muscle enzyme tests

stickywicket

You say she has only recently been diagnosed. I guess that, or possibly the uncertainty over the diagnosis, could explain what is quite conservative treatment. If you read other posts on here you'll see that children are sometimes given steroids as a first line treatment to try to get things under control and then started on a DMARD (Disease Modifying Anti-Rheumatic Drug). I don't know how much you know about the medication but naproxen is a non-steroidal anti-inflammatory drug (NSAID), lansoprazole is to prevent the NSAID from damaging your daughter's stomach and the paracetamol and codeine are just pain relief. The injections are, presumably, steroids. I don't know anything about blood muscle enzyme tests.It might be worth asking the doc tomorrow what that's to determine.

You might find some of these publications helpful http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies

I do hope you feel happier after tomorrow's consultation. Ask all your questions but remember also to listen to the answers Sometimes there can be more than one thing going on. It can help to take a partner, friend or family member so as to have two pairs of ears for remembering what was said. Please let us know how you get on.