my 12 year old diagnosed with JA

lare73

hi all, ive introduced myself on another bit of this website,
my name is clare and have 3 children, my middle son thomas, was diagnosed with JA last week, he has had pain for 6 months but im ashamed to say i thought it was just growing pains. it got worse about a month ago and i took him to the gp who did bloods which came abnormal, we were referred to the hospital, inbetween appointments tom got really sick and unable to walk or weightbare and the pain was intolerable for him, we ended up in LGI and he has scans, xrays and more blood tests, he had fluid drained from 2 joints and steroid injections. he is currently on PIROXICAM (feldene) anti inflammatory's, dihydrcodeine and paracetomol. we go back to clinic next week for more blood results and review.
thomas has walked up the stairs painfree for the first time today and is almost painfree, he said he has some aches but nothing like what it was like before. its like he is a different child!
is this normal? i am apprehensive but excited, is the worst over? thanks for reading, clare x

worriedmum

Hi Clare,
I think that JIA is so unpredictable that it really can go like that. It#s great that you have seen such a massive improvement in your sons symptoms. I know with my daughter she was unable to weight bear when she was mid first ever flare up and at the point of diagnosis, but with even a small amount of treatment - Naproxen, things improved loads even before her joints were injected.
The thing about JIA is that you have to learn to make the most of the good times, when he is comfortable and try to get on as normal, but don't be lulled into thinking that it will never come back. Of course, it might not! but you should always be prepared for it, because sadly in most cases, as i'm sure the docs have told you, it will come back. The important thing is tht next time you will recognise the symptms much sooner and get him the treatment he needs, so things will possibly never be as bad as they were recently. We are two yeears into our daughter having JIA and things are very much up and down, particularly down at the moment. You are probably going through lots of emotions - dismay, disbelief and even guilt. These are totally normal and if you would like to chat them hrough on hhere, I'd be glad to help if I can.
I wish you well on this road and hope you find support on here. I know I do. Best wishes to you and your boy. Stay in touch and let us know how things are going.
Sam.xxx

lare73

hi sam and thank you. its comforting to hear that we are not alone in this weird journey. i never realised children could suffer like this, it was heartbreaking to see my son who was once full of energy and life shrink to what i can only describe as an old man who struggled to even get out of the chair, i bathed him, massaged him, comforted him, but to little avail, i feel guilty for not taking him to the gp sooner and assuming it was just growing pains, but i have to move on from that now.

i hope your child begins to feel better soon. i have found this site to be a godsend for me, the doctors are great but sometimes you need a 'real true' answer from someone who's been there, i cannot offer advice now but maybe one day when we have come through this we can help others like everyone is helping us.
take care and keep strong, and love to your family x

anniesmum

Hi Clare - just wanted to say hi and let you know you are not on your own. We have been with the LGI since January to and they have been fantastic. I cant praise them enough. My youngest and third daughter was diagnosed in January with systemic JIA. The team there have been fantastic and I was at a stage like you when I couldn't believe my beautiful bonny little girl was in so much pain and like you describe - a little old lady. It breaks your heart, it is so dreadful. She missed so much school and we had some very tough months. The LGI have got on top of it (mostly and for now) but it has felt slow and we are not quite there yet - medication is such trial and error with this and we are about to change that (another story) As far as the guilt goes - us mums are so good at that - it takes time and reminders to yourself to realise it is the JIA and not you. I also have to say I think growing pains in 12 year olds are certainly more common than Arthritis - my eldest daughter who is nearly 11 has been diagnosed with them so please don't beat yourself up. Staying strong is so important especially at this stage so you must look after yourself to. Keep posting - I should have done more of that in the early stages but just felt so overwhelmed by what was happening. Take lots of care and I wish you luck for next week. Lucy

lare73

hi lucy, how lovely to hear from you, i have read a few of your posts about annie, im sorry for your little girls illness.

which rheumatologist are you under at the LGI?, Dr wood is ours, hes fab and very thorough, tom likes him and gill the nurse explained lots to him which helped.

we have had lots of support from friends, family and medical staff, we are very grateful.
thank you for posting to me, shame its under these circumstances, but hope i can offer support to you also.
i live in rawdon, which part of leeds are you?
take care and hope annie has a comfortable night.
clare x

anniesmum

Hi Clare - I have private messaged you so I hope you get it. Lucy