newly diagnosed teenager with JIA

caz.thomas

Hi
i am new to this site - my 14 year old daughter has just been diagnosed with jia - it has come as such a shock as she has never been really ill at all in those 14 years - we had hoped it was just restricted to one joint but over the last weekend her knee has become infected and she has to attend hospital tomorrow for injections- things are so bad with her at the moment with pain and stiffness i had to help her out of bed this morning
i can understand what she is going through re chronic pain as i have fibromyalgia and have had that for 6 years - i feel guilty because with all the running around over the past 6 weeks since her first injections and OT and physio etc i have become ill with chest infection and flare up of my fibromyalgia and depression - my youngest has been neglected a little - he also has emotional issues for which he sees a psychologist - feel like i am moaning - but this new diagnosis is affecting us all one way or another - i am an exhausted single mum trying to stay positive for her and my son and still trying to function myself - i have had to time off work from my full time job - need some sort of routine to fit it all in

dreamdaisy

Oh you poor thing, what a deal to have on your plate. I don't have children but often pop on this forum to see how are younger ones are getting on - and their parents too. Arthritis doesn't only affect the one with it, it impacts on ALL the family, bringing a different set of strains to everyone else. I think for the parents it must be sooooooo hard - what any parent wants to do is kiss it all better and take it all away, and you can't. Not with this. I know the other mums will spot you, and come and offer support - I will keep an eye out for you too, I promise: I can't do anything to help really, but we are all really good at listening. Vent your rage and spleen on us, that's why we're here. I wish you, and your daughter, well. DD

lucysmum

Oh hun I am so sorry!! I have 3 kids and it is my eldist who has JIA she is 7. My middle child who is 6 has been an amazing help and is now regseterd as a child carer. My youngest is coming up to 5. Things are busy but they calm down. Please do not blame yourself as it can not be helpped, children adapt and I am sure with help your son will be fine, sometimes they just need outsiders to spill their guts to, they feel guilty for wanting more of your time and beat themselves up about it!!
I hpe things go better x x x

caz.thomas

attended hospital today for steroid injections and they drew off 65mls from her knee - consultant suggested starting MXT next week considering her knee flared up just 10 tens after her elbow had been treated - fluid was sent away and tested and came back confirming JIA - waited in hosp for 5 hours for injections and blood tests but her veins failed and we have to go back thursday morning - then rheumatology nurse next week , then physio and OT week after then back to rheu nurse week after that and consultant week after that - do these appts slow down a bit - i am hoping work understand - glad i am off work sick myself with my fibromyalgia etc otherwise i wouldnt be in work - she did very well today but is in more pain since injections - have been trying to reassure her things will get better - but i dont know - am i just lying ????

dreamdaisy

You need to reassure her - as to how you do it, well, that is tricky one. I remember my mum telling me whole load of b****cks when I was young, about the whole body changing every 7 years and all the asthma and eczema would go away. Yeah, right. Don't tell her it will get better (we don't know that) but do tell her that the treatment should help to alleviate the pain and discomfort, that it will take time to establish a treatment programme ('cos it does) and that things will 'improve' - I think that is the strongest word one can use. There is, as yet, no definitive cure for all of this rubbish, one can only hope for an easing of symptoms. As for the number of appointments, well, only time will tell. Once she is settled into a treatment programme things may well settle on that front, but there will always be blood tests etc. I wish you both well. DD

Adele5

Hi I'm really sorry to hear this. My 14 year daughter was just diagnosed on Hogmanay so I understand what you are going through. It was a complete shock and it takes time to come to terms with it. My daughter got injections in her ankles knees and jaw and although they were saw later that day they made a difference about 24 hrs later. She was put on etanercept almost immediately (which is rare) because of the type of jia she had - enthesitis. It helped really quickly and she was able to ride again (she hadn't been able to for 3 months due to pain) she was able to get rid of her crutches too. It didn't completely do the trick but made a huge difference. She's been on methotrexate for 3 weeks now but is suffering side effects weakness headache nausea. The meds sounds scary but do help. We are at
The stArt of this journey and have good days and bad days. Enjoy the good ones - my daughter ran for the first time in 10 months this week! Yah! I've only asked one question on the site but everyone has been do kind and helpful. You are at the right place being here for support and help. I hope your draught feels a bit better soon. Adele xx