New member 15 yr old with SO JIA

lizajane10

Hello all
Just wanted to say hello as a newbie. My son who is 15 was diagnosed with Systemic Onset JIA at the beginning of January after being ill for 3-4 weeks with the usual rash, daily fever and some joint pains, including a 2 day stay in hospital. The first diagnoses were slapped cheek disease followed by viral urticaria, but after seeing a paediatrician and dermatologist a couple of times they were obviously on the right track with their tests and sent us to see a rheumatologist pretty quickly. We are at Birmingham Children's Hospital.

He is taking methotrexate currently orally (has only been taking it 2 weeks) but hoping to move to injections in the next couple of weeks. Currently 30mg prednisolone (it was originally 40) but with a plan to taper off to the end of April and hope the rash and fever don't come back (he was late with a dose one day and the rash immediately reappeared). Also piroxicam and a stomach protector and anti-sickness for the day after the methotrexate. He also had 13 steroid injections into joints a couple of weeks ago under general anaesthetic, which seems to have helped a lot.

I have seen other parents on here with newly diagnosed teenagers with this condition, it would be good to make contact. We have all been rather up and down. His main problems have not been (yet) so much the joints but more feeling generally ill either due to the condition or to drug side effects. He had a day where we had to go to A&E as he was suffering severe confusion and depression from the steroids about 5 days after taking the first dose, fortunately that has passed.

Feeling a bit more positive just at the moment as he has managed 4/5 days at school last week and 3/4 so far this week, plus Duke of Edinburgh training last weekend (which wore him out so he only did 2 hours at school on Monday!). Prior to this he had only been managing at best half time at school though they have been very good. Let's hope the improvement continues though I am concerned what will happen when we start reducing the steroids on Friday. He is coping very well but a bit down that his favourite activities which are sport and music (clarinet and piano) are both rather limited at the moment, as his wrists and fingers seem to be the worst affected.

Anyway, would be interested to hear from anyone who had a teenager newly diagnosed and maybe how you are getting on a few months or years down the line?

stickywicket

Hello Lizajane10. I'm not the parent of a child with arthritis though I've had it myself since I was 15. That was a long time ago though so my experiences will be of little relevance to your son.

I know parents don't come here very often and, remembering the hectic pace of life when my own two sons were young, I know why

Meanwhile, you might find it helpful to read other people's threads. MumV in particular (Her first thread is lower down the page) has a daughter, now at uni, who was diagnosed in her teens. MumV has put some very helpful stuff up. Also, if you look at Arthritis Care's 'Publications & Resources' (top of page) there is a booklet for the parents of children with arthritis. I hope some of that will be of use.

MumV

HelloLizajane10

Gosh I am not surprised your son is despondent about not being able to play his instruments and sport, he has had a rough time.

It is positive to hear his treatment is already so intense, getting the disease under control is crucial and protecting those precious joints is critical.

You don't say how much Methotrexate he is on I assume this is increasing as the steroid is decreasing. I remember the mirical of those steroid injections eight for my daughter, i could not believe it when my daughter sat cross legged on the bed

I am sorry to hear he had to go into A&E it must have been quite scary for him. it's great to hear he is having a wellness spell, and yes long may this continue, it is early days for you /him yet and there could be lots of adjustments in medication.

My daughters diagnosis at13/14 was, and remains JIA Polyarticular and hyper mobility, this is different from your son, but I believe treatment can be similar. She is now 20 and her story is a positive one.

Obviously my support is as a parent and not a medical practitioner, but I am happy to chat with you if I can help lend an ear, share ideas.

There are lots of positive initiatives for young people in the world of living with Arthritis and if you do not find them I will post links for you, and share how I keep up to date with things.

Wellness wishes are sent for your son, the hope of remission and better still a cure. in the meantime a condition well and truly under control and normality back into his life and precious fingers working again.

My daughter advocates being happy for wellness, surrounding herself with friends, laughing a lot, keeping busy and active, a winning recipe she created herself .

Kind regards

MumV

lizajane10

Thank you MumV and stickywicket, very kind words, the methotrexate is 20mg (it hasn't been increasing, it is a fixed dose), he moves on to the injections next week, I hope he will cope with that (the nurse will hopefully train him to do his own). He doesn't seem too worried but might be as it draws closer! He is hoping he will feel less sick with the injections.

He had a horrible day last Saturday feeling very sick and unwell generally, with a bad headache, but had had methotrexate and reduced steroids 30 to 20mg all on the same day and I think was suffering withdrawal symptoms as well. I think we will discuss with the nurse not doing both on the same day in future or maybe dropping by 5 rather than 10. I'll see if there is anything on here about steroid withdrawal. Fortunately after 24 hours he was quite a bit better.

We are finding everyone at the hospital so fantastic, nurses and physios all available at the end of the phone and met a great occupational therapist yesterday as well. Still feeling very unhappy at times though, shame that life all seemed to be going so smoothly for him then something like this gets in the way! Trying to stay hopeful for the future.

MumV

Hello lizajane10,

Hello again, oh yes aren't the hospitals wonderful with our children, it is such a mix of emotions, you don't want to be there as it means admitting your child is not well, yet you are grateful and know they are in a good place,they do wrap you in a comforting and fantastic support network, a whole team of experts and it is so reassuring. They allowed my daughter to stay with the children's department, for a little longer than needed before the transfer to adult.

My daughter administers her Methotrexate subcutaneously now, and yes did find an improvement in sickness feeling. Her original dose did increase gradually and her top dose was 30mg and stayed at that for quite some time. ( with her current wellness spell she is presently gradually reducing) Go my girl go, positive wishes for her, her next delivery is 10mg, I am holding my breath.

I am sorry your son has had some rough days. It is incredibly hard, and very upsetting watching your child suffer, and it is very hard at first to turn your mind to the positives, and what a shock. Outwardly you are strong and positive for your child, inwardly the shock is all consuming. Yet to express these feelings you feel selfish. I guess the benefit of this forum allows us a place to say we are sad today and let the feelings evaporate a little as we learn to adjust. It does take time, but it is possible/kind of. It is early days for you all in lots of ways.

I will agree with you and say definitely get your son to learn to inject himself, the more independent and involved he can be the better, he will learn himself to listen to his own body, I know you don't need this advice, he sounds like a capable young man, your already have him on the right tracks.

One thing I would like to say, which I hope helps is look at your child, not at the illness, keep saying this to yourself. Let every visit to hospital become a treasured 1:1for you a him, this time will pass so very quickly.

That's enough of my outpourings, keep sharing things are always improving.
Hope is good, since going to University my daughter has never looked back...did I tell you all the activities she undertakes, mountaineering, walking, orienteering, cycling she didn't do these things prior to Uni, she is also doing well with her studies.

Kind regards.

mumV

lizajane10

Hi all, Son is doing better though he has yet to manage a full week of school in 3 months! Managed 4 days out of 5 for the last 3 weeks though which is a big improvement. He also did his Duke of Edinburgh bronze practice expedition with a night camping last weekend, I was very proud of him. The organisers arranged to have his overnight stuff carried so he just had a daysack, he wanted to be like everyone else but I think it was a good idea. I was worried he'd be fine on the Saturday then seize up completely overnight and wouldn't be able to do anything on the Sunday, but he was fine. He's done the methotrexate injections 3 times now. I can see his hand shaking! But he's coping very well. He's feeling less sick but now gets a bad headache for 24 hours, does anyone else experience this? I'll have a look on here.
Thanks MumV, glad to hear your daughter is doing so well.
Amazed that with quite a rare type of arthritis, it turns out my boss's son and music teacher's wife both have/had systemic onset JIA. Both doing well though one is off all medication aged 21, and the other still taking it after 45 years!

stickywicket

That does sound better and your son sounds to be a remarkable young man if he managed his D of E practice expedition despite all his difficulties. Of course he wanted to be 'like everyone else'. They all do at that age. That's partly why it's so hard for them.

I'm also impressed that he does his own injections despite the shaky hand. (I think mine might be too :roll: ) I don't get meth headaches so I'm afraid I can't help there.

You've clearly got a very determined lad there. Well done both of you!

MumV

Hi Lizajane10,


Wow that's a fantastic turn around, great to hear and every right to be proud of him. Yes I had forgotten the DofE expeditions, that was pre wellness. The organisers were great with my daughter too on Gold expeditions, bags carried for practice ones.

Glad (well not glad but you know what I mean) you have found some local people to share experience, it's amazing what you don't know until things strike personally. Really interesting to hear of the 21 year old completely off meds.

I don't know about the headaches, might be worth opting on living with. My daughter is now on 10 mg and feels great. My Mother's Day present was a picture of her in a Uni Sport competition...priceless.

I hope your on goes from strength to strength, really good to hear.

Kind regards

Mum V

Chelle123

Hi, I haven't been on the site for a while.
My son was diagnosed last May and so I thought you might find it helpful to have some feedback 11 months on.

Tom was devastated by his diagnosis as he is a keen football and rugby player. I have tried to remain positive at all times and not wrap him in cotton wool (extremely difficult at times, but it's not what he wanted and doesnt like to have people fussing over him, so I respect that).

He returned to school after a month but only for two lessons maximum per day. He would then come home and sleep for several hours.

September 2012 Tom returned to school full time, still on steroids and MTX injections. We weaned him off the Steroids really slowly to avoid a flare (2.5mg at a time over a 4 week period). He has only missed two school days since september and is loving being back at school and feeling more normal.

Tom returned to football training in September but was not allowed to play until they were sure the swelling in his spleen and liver had gone down. He was very sensible and started off gradually in 10 minute intervals. Tom is back playing for his team and although he can only manage 15 minutes on the pitch it makes him feel part of the team and this is really important psychologically. (I sobbed the first time I watched him play football and had to go and sit in the car to compose myself. Silly mother!)

Anyway, nearly a year on and there is certainly light at the end of the tunnel. Tom seems to be back to his normal self, has lost the weight he gained from the steroids and the fatigue is gradually decreasing.

Tom made the decision a few weeks ago to try the MTX tablets rather than the injections which he dreaded. The consultant was happy for him to try this option as his symptoms are now under control. He feels more in control taking the tablets and it is a lot less stressful. (something to consider once in a medicated remission).
He is now in a medicated remission and will be on MTX for at least another 6 months before they reduce his dose.

With a few minor tweeks to routine you can rule this condition rather than let it rule your son. It sounds like you are already on the right track though.

He does get MTX headaches but we have found that paracetamol and lots and lots of water seems to do the trick.

If nothing else this horrible experience has meant that my son and I have an extremely close relationship and also you learn who your true friends are.

Life will slowly return to normal for your son. Good luck to you both! x

lizajane10

Thank you very much for your reply. Does your Tom have the Systemic Onset JIA or another type? Sounds as if he had a very hard time having to miss so much school.
My son isn't doing too badly at all, he certainly looks much better and is just more like his old self, though he still has aches and pains most days and is down to have more joint injections probably in May. He's concerned about that as it meant 3 1/2 days off school last time. But they are prepared to cancel if the joints get better between now and then.
He managed one full week at school (hurray), the week after went on a 4 day French trip (which we came so close to cancelling, glad we didn't), then needed a day off to recover! Now it's the Easter hols but hopeful his attendance will be pretty good next term.
He is handling his methotrexate injections fine himself, wanted me in the bathroom the first two times in case of a problem but now just goes off and does it himself. And I have to say it seems to be working though I hated the thought of it to start with. He still gets a headache but he can still go out and about and do things. He seems to get fewer side effects with the injections (no sickness) and seems to be ok with doing them. We have to cope with taking needles abroad in August but going by ferry I'm sure will be easier than flying with all the kit.
He was tapering off on the prednisolone but unfortunately having got down to 5mg per day, the rash which started it all off put in a reappearance. So he is back up to 10mg which he isn't keen on, but he started at 40mg so I have to remind him it's 1/4 of the dose he started on. The thought is to reduce the prednisolone again in another month or two when hopefully the methotrexate will be working better. He has put on a bit of weight but was exceedingly skinny to start with so it's not a problem, he doesn't like the chubby cheeks though.
He misses his cricket which the docs have said he shouldn't do at the moment (I was surprised by that as it's not exactly a contact sport, but it's the hard ball which causes a lot of jarring in wrists, shoulders etc even if you don't bowl, and he has had a lot of trouble with wrists and fingers). I would like to find a sport he can do, but he is doing a little running when he's up to it, though he pays the next day with a lot of aches after any type of exercise, even a gentle walk. Hopefully that will improve. He has done our local fun run (8.5 miles) the last 2 years before he was ill, he is aiming to walk it this year for a local arthritis charity. He has also had a swim and a short cycle ride with a friend, and a little badminton in school PE. I don't think he's up to doing anything competitive at the moment but that may change.

I had a long chat to a friend whose daughter had glandular fever and missed a lot of school - it was very useful discussing how to handle school, and reassuring that she feels she has pretty much caught up even with nearly 6 months missed.

So - not too bad overall but still room for improvement! Thanks for your good wishes everyone and hope Tom continues to stay well.