Recent diagnosis of JIA -my story

capricorn

Hi,
This is my first post, so thought I would introduce myself.
I am the mother of 3 - 2 teenagers (18 &16) and a ten year old boy who has recently been diagnosed with JIA - this is obviously new territory for me, so I have been searching the web for more information and came across this site :P .

The story so far is that I took my son to the docs back in November with pain in his legs, the doctor wanted an xray on his hips and the next day rang me to say he had made me an appointment, that day, at the Children's hospital. His hips were ok, but they found swelling on his ankle so put a plaster of paris pot on it. After a week I got a call from school saying his pot had broken and they had taped it up with parcel tape!! Back to hospital to get it replaced - they set it at the wrong angle, (making him unable to walk) so we had to go back again, this time they put a different one on - one that the child can't bear any weight on - needless to say by the next day it had crumbled :roll: Several hospital appointments later they gave him a cortisone injection in his ankle, he was then to have another injection in a different joint in the same ankle, but when we got to the hospital my son went into "awkward" mode and wouldn't have it done. I think he is fed up with going to hospital - he now has to go to have regular eye checks and in his 10 years has visited hospital many times having broken several bones (collar, nose, ulna, radius) plus several A&E visits for numerous sports injuries. He loves playing football - is a good goalkeeper, but he also has Severs disease - Like the consultant said it is probably this and the JIA in his ankle joint that has caused him to have so many accidents.
Last Friday I saw an educational psychologist - and at last I feel I am getting somewhere - someone who understood how this can impact on a child, although in my son's case it is not just the JIA - (over the past 2 years he has endured a year of bullying at school, been the only witness to his uncle having his first and only seizure, seeing me, his mum having a brain heamorrhage, his grandma having breast cancer - all these, I believe, have to contributed to his low self esteem)

Incidentally my husband currently has a severe attack of gout - in his wrist -a joint he has not had it in before - I will be reading up on previous posts and may be back asking questions. I think I have rambled on long enough, so I will end here - thanks for reading.
Sarah

stickywicket

Capricorn, I’m so sorry your post has not been answered. As you’ll be well aware, parents of children with arthritis tend to be very busy people so they just don’t have the time to be on here as regularly as the rest of us.

Your poor son has really had a tough time of it, hasn’t he and not only on the JIA front? I do hope the educational psychologist can help him to deal with things. It must also be very hard for a sporty lad to be diagnosed with arthritis. My own elder son still tears after any sort of ball at 40 and I just can’t imagine how he’d have felt if he’d got this disease at a young age. He did have Osgood-Schlatters for a couple of seasons when he was about 14-15. I believe it’s similar to Severs but affects the knee, not the heel. All he has to show for it now is a bony bump under his knee.

And, how about you, Capricorn? You only mention in passing your own brain haemorrhage, your husband’s gout and your mother’s (mother-in-law’s?) breast cancer. You, too, have been through quite some mill and, I’d guess, are still going through it.

I really am sorry that I didn’t pick up on your thread before now. I shall be watching this forum far more closely in future. Please feel free to talk about any aspect of your very real difficulties. I do hope that things might have improved a little in the time that has elapsed.

capricorn

Thank you for your lovely response- I appreciate how busy everyone is so it's not a problem.
My son has a couple of hospital appts lined up, one for his eyes to be checked over again in July and one on 3rd August with the Rheumatology consultant, although at the last visit she said she didn't need to see him until November, so not sure what that's all about. We are still waiting to hear from the educational psychologist department regarding an action plan - I was told it could take 6 weeks to arrive - so I will give them a bit longer before chasing it.
I am due another brain scan in August - they are monitoring another cerebral aneursym which I have. Mum's breast cancer is cured so that is one bit of good news, but hubby has been out of work since last November so that is causing me a lot of unwanted stress!
We have some free tickets to Alton Towers tomorrow, which is quite convenient as it is an inset day, but I have just heard it is probably going to rain all day :roll:
Bye for now and thanks again.

stickywicket

Thank you for being so understanding, Capricorn. I’m very pleased your Mum’s breast cancer is cured. I had it about 20 years ago and have had no problems since. Your own cerebral aneurysm must be a continuing worry though, not to mention your husband’s situation. How on earth are you supposed to stay stress free?

Obviously I’ve no idea why the rheumatologist would bring your son’s appointment forward but it must be better to have it sooner rather than later. The original date (November) sounds a very long way off for a young lad just diagnosed. I think this has to be an improvement. Is he taking any meds or is it just the steroid jabs? How’s he coping? I guess it must be cutting into his leisure activities.

I hope you manage a good day at Alton Towers whether it rains or not. Please keep in touch.

capricorn

Hello again,
Sorry not been on for a while - life continues to be as hectic as ever.

My son has not been complaining much about any pain in his ankles - just pain from the severs in his feet. His knee suddenly gave way whilst cycling the other day - then two days later his front scooter wheel went down a pot hole and he went over the handlebars landing on both knees so he continues to be in the wars :roll:

I took him for his routine eye examination last week and that was clear. Next week we see the rheumatologist again, so will see what she has to say then. On Monday of this week I went for another brain scan so am anxiously awaiting for the verdict on that. I have an appointment at the dentist on 9th August, to have a crown fitted, so all in all we are keeping the NHS busy!

Hubby took my son to Alton Towers in the end, but then rang me mid morning to say he had lost him!! Anyway, my son was unaware that he had been mislaid so all was well!
Bye for now
PS forgot to say he is not on any meds - just the injection up to now, but only yesterday he said he was never having one of those again.

stickywicket

I think this maybe calls for cautious optimism, Capricorn. I’m pleased his eye examination went well and very much hope the rheumatology visit and the result of your brain scan will be as good.

Husbands mislaying sons, eh? That rings a distant bell. Some things don’t change.

Please let’s know how you both get on.

capricorn

Morning,
My son had his rheumatology appt last Saturday, which wasn't helped by the fact that I got the time of it wrong - meaning a wait of an hour and a half :roll: Anyway, due to the fact that he had been virtually pain free and had no swelling, she said she did not need to see him for 6 months - unless, of course, he had problems in the meantime.

Typically, the next evening he came in from playing out saying his ankle was 'killing him'. This was the same Mon and Tues evening of this week and more worringly he was also complaining that his wrist hurt, which is not a joint that has previously been affected. I then thought the wrist may be hurting because we had been 10 pin bowling a few days before, but my son told me it was not his left wrist, which he used for bowling, that was hurting, so that put paid to that theory. I am monitoring the situation and really hope that the pain subsides. It is his 11th birthday on Saturday and we are taking 3 friends to the cinema and then for another game of bowling - I just hope and pray he doesn't suffer with any pain on his special day.

As for me, I am still waiting for the results of my brain scan - the 10 days I was told it would take, has today turned into 17.

Bye for now.

stickywicket

Oh Capricorn, isn't this just typical? Everything is fine until just after the rheumatology visit. It could, I suppose, be anything that set off both his wrist and ankle - connected to the arthritis or not connected. I think you're doing all you can do ie monitoring the situation and seeing how it develops or, hopefully, not. It might be the bowling that affected his wrist. People seem to use both hands to some extent and the balls/bowls are heavy things. I hope it will all subside.

If not, the rheumatologist did say he could make another appointment in the meantime and, in my experience, they really do mean this and I'm 100% sure that they would realise situations change even more quickly with a child than with us older arthritics. If he's no different, or worse, in a week or so I'd have no hesitation in ringing for a quick appointment.

You really don't need the added concern about your brain scan results. Is it possible for either you or your GP (who presumably realises you also have worries about your son's health) to try to hurry things up there? I hope things work out well for both of you, Capricorn. Meanwhile, we are always here even if all we can do is 'listen' and understand. Take care.

dreamdaisy

Hi capricorn, it's nice to (belatedly) meet you. I used to be a frequenter of this forum (despite not having children but I was an ill child) but in the past few months things have not been going well (though nowhere near as dire as what you and yours are contending with at the moment) so I let things slide a little on here. I apologise. :oops:

Your lad has been going through the mill a bit, hasn't he? Arthritis is a little like a rollercoaster, with some mischief thrown in as well. The most pernicious of symptoms do have the ghastly habit of disappearing on consultation days only to come roaring back the day after - I swear my PA knows when I am going to the consultant! On LWA we advise people to keep a regular diary of the good and the bad, including photos of any swelling, so that there is a record of what has been going on. I have no doubts that you are far busier than me but could that be something worth considering?

I hope he has a good birthday, that you get your results soon (and that they are good results, not nasty ones), that your OH's gout sorts itself out (mine has just had a bout in his right foot, it's still hanging about I think - he won't say) and that all things start to go better for you soon. I wish you well and I will pop back again in the future - that's a promise. DD

Poppyg1rl

Hi Capricorn,
I'm so sorry to come in late to your thread, but I know you've had excellent advice and comfort from the lovely Stickywicket lady
Isn't it just typical that as soon as your son see's the Rheumy he's fine and couple of days after complains of pain :roll: do you have a rheumatology nurse you can contact at the hospital? If you don't know give the rheumatology department a call and explain the recent pain your son is suffering with, they may be able to see him urgently, you know what they say, don't ask don't get
I'm so sorry to hear of all your health worries with yourself and family, you must be fed up waiting for the scan results, hang in there, you're not alone and while I can't offer and medical advice other than through my own experience with PA, I can certainly empathise.
I'll be thinking of you, your son and your family, sending you healing hugs and positive thoughts that all will be well.
Take care and please let us know how you get on, if you ever want to pm me for a natter feel free, I have 3 teenage lads myself 17,15 and 13 and know how us Mums feel when our children are ill, I'm happy to chat whenever. xxx

Ankyspond

Wow you have been through the mill, I am truly sorry for the crap you have been going through lately. I really hope things go well for you and your son will find his own way of coping with this disease. I teach in a secondary school and we have kids with Arthritis and they all find there own way with it. The bullying is not acceptable and I hope that has been dealt with and is no longer happening.

I too have three kids 15, 17 and 20 and can imagine how you must be feeling, I do worry my kids will get this it but you have to live for today and worry about tomorrow when it comes.

Please keep in touch with us so we can support you and give us a shout if you need to scream, cry, laugh or rant away. xx

capricorn

Thank you everyone for your replies, comments, advice, ideas and good wishes, which is very much appreciated, especially if you have your own problems to face.

I did email the rheum. nurse yesterday just to put them in the picture. She said they were more than willing to see him again if things don't improve and also gave me some tips on helping him with the pain, so I was impressed with that. He has not complained so far today, but when I asked him on the way back from the supermarket, how his ankle was, he said "it still hurts", but he was obviously tolerating it. At 5.30 he caught the bus up the valley to my Mum's where his beloved football team are on Sky tv. My other son has since driven up to watch it too and will be bringing him back. My daughter has just gone out so I am making the most of the peace! She has just returned from a week in Ibiza and managed to get tonsillitis whilst there - the doctors fee and prescription was just under 100 euros - so I have been arranging to get that refunded today - made me think how lucky we are to have the NHS.

Ankyspond mentioned the bullying so thought I would just mention something on this topic. My son starts secondary school in September so he and the other new starters spent a trial day there a week before they broke up. Unfortunately, he didn't have a good experience, as he was bullied by some year 9 boys travelling up on the bus - booing him, swearing at him, saying they didn't want him on the bus, telling him he should get off at the next stop ( a mile from school) etc. Now I will tell you what caused this and I am sure you will be as bewildered as I was.

About 3 weeks before that, someone in our village had broken a window at the church hall. The local police were asking local kids if they knew anything. They asked my son who, without a second thought, told them who he had heard had broken the window. This lad (a year 9) was subsequently made to pay for the damage. I can only assume that the police told this lad and his mother who had given them the information because over the next few weeks, my son was tormented by this lad and all his friends and it was these lads that made his journey to school a nightmare. To add insult to injury, the lad's mother, who helps out at primary school said to my son (at school) "You have just cost me £100". She also helped out at a school production that the primary school showed in the last week of term and once again, behind stage, confronted my son and told him again that he had just cost her £100.
I really think she failed to grasp the fact that it was actually her son that had cost her this money. I am now waiting to see if this continues when school restarts in September. There is a transition plan in place for my son at this new school, which took me months to arrange, so they are aware of the various problems my son has already encountered, so hopefully they will put a stop to this if it were to continue.
Well, I think I have rambled on long enough.
Thanks again everyone.

Poppyg1rl

Hi Capricorn,
You're not rambling honey, get it off your chest that's what we're here for
Re the bus bullying thing, I've had experience of this with 1 of my sons who use a school bus, in his case he hadn't done anything wrong was just picked on because he was new. I won't bore you with all the details as it was a horrible experience, but my lad didn't want to worry me about it so didn't tell me :roll: he did however mention it to my brother eventually, who alerted me and I informed the school who then put special prefects on the bus without the bullies knowing why they were there...needless to say the bullies were caught in the act of bullying a child sitting next to my son, identified to the school and kicked off the bus thankfully they have since left the school and now that Jack (my son) is in sixth form he has for the past 2 years been a bus prefect himself making sure this bullying does not happen on the bus
Capricorn, please alert the school as soon as you can about what is going on with this yr 9 bully, they'll take a dim view of a yr 9 bullying a new yr 7 I can assure you.
It's bewildering how some parents think their 'little angel' are exactly that and cannot see their faults :roll:
Please let me know how you all get on? Thinking of you Xxx

Ankyspond

Hi,

I am so sorry to hear that your son has had such an I justice done to him, the only person to blame was the person who broke the window. Unfortunately his mother obviously has different views, she should be hanging her head in shame!

Now firstly you MUST go into the primary and report how this mother great your son, she is in a position of trust and that fldose not mean she should be allowed to bully a student, write it all down she is bully like her son.

As for the boys on the bus again you must go into the secondary school and talk to someone about this, do t give them the chance to do it again it is not acceptable. I hope you get tho sorted your son has enough to deal with without this as well. Xx

stickywicket

I’m very pleased you’ve had an encouraging response from the rheumatology nurse, Capricorn. I guess it means you’ll feel much happier if you have to make an earlier appointment or just contact again for more advice.

Is the bullying you mentioned that which you spoke about earlier or is this even more? I think Poppy and Anky have given you some good advice there. How are things panning out with the educational psychologist? Any use? DD’s suggestion about keeping a pain diary is also a very helpful idea because we so easily forget the ins and outs and times and seasons of these things. You don’t need to keep asking him. (Boys hate that!) but just, whenever he mentions it, or it comes up, make a note for when you next see the doc.

I hope you get some good news soon too.

tillytop

Hello Sarah

I am so very sorry that you and your family are having such a tough time at the moment.

Whilst I don't feel I can add much to what has already been said, I thought maybe I could give you some encouragement on the bullying front. My niece was bullied horribly when she started secondary school (both at school and on Facebook) but the school were brilliant. They have a lunchtime club where anyone can go for a chat and advice and they acted promptly to deal with the bullies. My niece's form teacher kept a close eye on her and made sure she asked regularly if everything was ok. And, when my niece moved into the second year the new form teacher phoned her Mum and Dad to say that he was aware of what had been going on and would keep a careful eye on things. Although I don't have children, from what I hear, schools these days take a really tough line on bullying and try hard to foster a culture where the children feel comfortable about reporting any bullying which does occur.

I do hope that you get your scan results soon and that your husband's gout settles down. I hope too that your son has a lovely birthday tomorrow.

Thinking of you.

Love Tilly xxx

capricorn

Just a quick post to say I'm still here!
My son, who has the JIA, started secondary school on 6th September and appears to be settling in - the first day he told me it was "mint", the second day he told me it was "getting a bit boring now"

Having spent a lot of time and effort making his new school aware of his conditions and other problems etc, he is, I believe, being well supported within their pastoral care system. It appears that perhaps I should have put as much effort into making his football team/manager aware. The football season has started and the first match last Friday, needless to say triggered the severs and/or the JIA causing him pain. The next day at footie training, my son told the manager why he was limping and in pain(as best as an 11 year old boy knows how to explain these things) only for the manager to send him home saying to my son "You might as well go home as you are causing me pain watching you limp and complain"
I can't begin to tell you how angry and upset this made me (and my son) feel.

Finally, the 10 days I was told that it would take to get my brain scan results eventually took 45 days. A long anxious wait, but the news is that my unruptured aneurysm has not changed since my scan last year so they have scheduled another MRI scan in 12months time. A bit of breathing space there.

Too much else going on to mention, but I'm off out for a bit of "me" time - lunch with a friend :P
Best wishes to everyone,
Capricorn

dreamdaisy

Football managers. :roll: The average bloke may have a one, two or even three-track mind but footy boys? Nothing but footy. I hope he soon receives a penalty kick in his goal area. What an insensitive, insulting and revolting comment.

I am glad to hear that you have the OK at the moment and I hope you have an utterly splendid bit of 'you' time. If I have any further (and not so violent) thoughts about the football issue I will come back. DD

stickywicket

Good to hear from you again, Capricorn, and ever better that your brain scan results seem as good as can be hoped for (though it must be a constant worry). I'm also glad your son seems to have made the school transition well.

Football coaches? Oh I know! Many of them are failed footballers who are hoping to ride on the success of their teams. My son was upbraided in a friendly (2 teams from the same club) for stopping to check that a lad he'd tackled, who'd stayed down, was OK. They were all 12 yr olds!

I hope the Severs improves - not to mention the coach.

I also hope you had a good day. Thanks for the update.

capricorn

Hi everyone,

I thought it was a while since I posted, but I have never forgotten the warm welcome and supportive replies I received, so thought I would just pop by and say hello

My son's JIA seems to be behaving at the moment (touch wood), he had his eye check a couple of weeks ago, which is clear, and his next rheumy appt is 22nd Feb. His school rang me last week asking if they could contact his consultant to get a better idea of his condition and how they should support him at school etc.

Nothing much more to report other than hubby's gout has returned with a vengeance - both knees, toes and wrist - he rather supidly had run out of tablets, so has been in agony over the weekend - anyway has seen the doc today who reckons the little toe one is about to burst open :shock:
Sorry to end on such a pleasant note!!

Capricorn

stickywicket

Hello again, Capricorn. It's lovely to hear from you again, especially as your news seems to be mostly good. I'm so pleased things are on an even keel for your boy. That will take away so much stress for you. It's also excellent that his school is taking such a pro-active attitude. As for Mr Capricorn - I feel for him but isn't that a very blokeish thing to do, to allow oneself to run out of meds? I hope he soon has them again and they work quickly.

I hope too that you are keeping well. Any scans in the offing? Take care and thanks for the update.

capricorn

Hi - thanks for asking how I am Stickywicket - I always seem to forget about myself! Keeping pretty busy - I took on another part-time job in September - I now work in a cafe and a bank - when I'm not there I'm kept busy with family life - like this evening when my youngest son (the one with JIA) shrieked "Mum, quick there's paint everywhere" - He'd knocked a full tin of white emulstion off the shelf in the untility room and he was right - it was everywhere!!

I am currently half way between brain scans - 6 months since the last one and six months till the next one. I don't much care for having MRI's but having got through 2 brain ops I ought to think they're a doddle!

Thanks for asking,
Capricorn

stickywicket

capricorn wrote:

I am currently half way between brain scans - 6 months since the last one and six months till the next one. I don't much care for having MRI's but having got through 2 brain ops I ought to think they're a doddle!

I expect it's the waiting for results bit that's the difficult time, Capricorn. Good that all is well right now, though.

Hey, at least it was emulsion paint that your young lad knocked over. Gloss would have been a real nightmare. What is it about boys and messes?

capricorn

Hello again, it is almost 9months since I last posted - can't believe where the time goes!

My son had his rheumy appointment on 17th October - a date which had been changed from August, so it was about 8/9 months since he was last seen. His ankles have only caused him pain on occasions, but always after playing football. We saw a new consultant this time who was very thorough and asked my son at the end if he had followed and understood what he and the other two staff present, had been discussing about him. My son replied that he had understood, but was then asked what they had said about him - the complete silence obviously meant he had no idea at all!!

We had a 40 minute wait before seeing the consultant and the hospital was so,so hot that I was pretty sleepy by the time we were seen and whilst I did gather that he was arranging for my son to have an ultrasound scan on his left ankle - I can't for the life of me think what the reason behind it was! I must admit, I know very little about JIA, but does anyone have any suggestions as to why they might be doing this scan, or what they might be looking for, as he's not had one before?

The appointment for the scan arrived today which is towards the end of November, so no doubt I'll get to know eventually.

Capricorn

stickywicket

Hello Capricorn. It's lovely to see you again. Your boy doesn't seem to be doing too badly. I hope things are OK for you, too.

I think the ultrasound will enable them to see if there's inflammation in the ankle but please don't take my word for that as I'm not sure. I hope there isn't

capricorn

Hello everyone, hope you all had a good Christmas and New Year

I am a little bit mystified! My son had his ultrasound scan on his ankle at the end of November, which as you suggested Stickeywicket, was to see if there was swelling. Shortly afterwards I received a letter from the consultant saying there was no sign of active arthritis and he suggested the pain must be mechanical and therefore I should contact our GP with a view to getting some physio organised for him. I am now wondering if this means he never had JIA in the first place. Obviously it would be great if he doesn't have it, but having spent the last 2 years or so thinking he has and all the associated hospital rheumy appts plus those for his eyes to be checked has left me a bit baffled.

Anyway, if we don't have to keep attending hospital appointments, it will be a relief. Talking of which, I had my annual brain scan in July and got the results in October (a long wait, but I got lost in the system!) and the good news is that my brain is stable (or at least it is in their opinion!) and they do not need to scan me again until August 2015! So a bit of breathing space there too.
Bye for now,
Capricorn.