Recent diagnosis of JIA -my story

stickywicket

Hello again, Capricorn. Thank you, I had a lovely Christmas, a hectic New Year and a cold ever since :roll: but, all in all, a good time. I hope you did too.

It does seem a bit puzzling about your lad's results though, of course, it would be lovely if he didn't have arthritis. It might have been an upheaval with all the hospital visits but far better safe than sorry.

I can't remember if he's on meds and, if so, which. If the rheumatologist has left him taking meds other than pain relief then, clearly, it is envisaged that he still needs them. It's possible that he has arthritis and it's gone into remission. It can do that. (But normally we are advised to continue with the meds as it has a habit of biting back viciously if we don't.) Will he have a further appointment with the rheumatologist? Maybe your GP would be the best person to answer these questios. He should have the consultant's report by now.

I'm very pleased that your own latest scan results are good. Long may they stay that way.

capricorn

Well, I can't quite believe it's over a year since I last posted on here. The reason I called in today was to try and find out if I had recorded my son's last rheumy appointment with a view to working out when the next one was. Unfortunately, it doesn't appear that I did! All I can remember from the last appointment was that the consultant recommended physio for his hamstring muscles and an appointment was booked for this at the hospital, but my son, through his stubborness (now aged 13), refused to go :oops: .

I'm sure an appointment will turn up in the post at some point - no hurry as he doesn't complain of any pain and for that I am truely thankful as things have not been easy over the past four months - my dad had a stroke (recovered well), my husband's nephew commited suicide, my step father in law passed away, the bank where I've worked for 35 years had an armed raid a couple of weeks ago (albeit I was not in the day it happened) and now my mum's in hospital with pneumonia.

So from a rather worn out Capricorn, I'll say goodbye.

dreamdaisy

Oh my word, you have had a tough time of it, haven't you? I am so sorry and I hope that things begin to improve for you all soon.

In your shoes I would chase up another hospital appointment because once one is 'out' of the system it can be hard to get back in. It sounds as though your lad is doing well but that should not be taken for granted. Good luck with everything and hope to hear from you again soon. DD

Popsicle

I have only just read this thread and whilst i am a newbie i suppose to the world of JIA (didnt know it existed until Feb!), i cant offer any useful advice other than to say sorry to hear what a horrendous time you've been having. I really hope things are looking up for you and all of your family, it puts my life into perspective. I've been feeling particularly sorry for myself recently just with 2 yr old with JIA and 4 yr old with hearing probs, development delay and the terrifying prospect of school starting soon for her. Actually none of which are really that bad in the grand scale of things but very easy to get pulled down by it all.
So if anything good has come out of your story then its helping to get my head back where it should be and stop feeling sorry for mysefl!
xxx

stickywicket

Popsicle - Just a thought. One of my grandsons was adopted when he was 4. He didn't have the best start in life and my son and daughter-in-law opted to defer his starting school for a year so that they could help him first to talk properly (He struggled with 'k's and 'g's) and concentrate more. This has paid off. He's no high flyer but is happily settled at school (He's now 7) and can keep up with the rest. Would this option be worth considering for your little 4 yr old?

capricorn - I'm sorry things have been so tough for you on so many fronts. Also that I didn't see this post earlier. I was away for a month Mar-Apr and just missed it. My apologies. I do hope things are a little easier now.

capricorn

Hello again.
Many thanks dreamdaisy, popsicle and stickywicket for taking the time to post a reply.

I will apologise in advance if I go off topic a little bit :oops:

Dreamdaisy - A few days after my last post, I received a letter with an appointment for my son, so at least we weren't lost in the system. However, I received two more letters this morning from the hospital, one apologising and saying they had to change the appt date from 6th June to 11th June and the other one saying that they had to change the date from 11th June to 25th :roll:

I hope you had a pleasant break Stickywicket - a month away sounds like sheer bliss to me! Things have quietened down a little now - just a swollen cheek at the moment -an infection following a tooth extraction on Wednesday. I shouldn't grumble though- the day after my last post I went with my sister to visit my mum in hospital and my sister informed me that her husband had been admitted to the same hospital earlier that day with a heart attack. Thankfully, I can report that both are now recovering well.

Just wanted to say to popsicle that I appreciate your kind comments and whilst I probably have had more than my fair share of life's "nasties" thrown at me recently, I can fully understand your own concerns regarding your children and those concerns are fully justified and no less important than any of my own problems.

I hope, with the right pastoral support, your daughter will be ok during her school years. You may find you have to push people along the way to get the care and support you deserve though. My colleague's son has been completely deaf since birth and I am always amazed how he has learnt to speak fluently, follow conversations, including ones on the telephone etc. He is 20 now and has just started his second job since leaving school. I hope this gives you a little comfort and encouragement at what is possible to achieve through adversity. I'm still a novice when it comes to JIA, so I can't give you any advice there - I am very fortunate that my son's JIA has caused him very few problems -I really hope your experience is the same.

Bye for now,
Capricorn.

capricorn

I mentioned in my last post that my son's routine rheumy appt had been changed from 6th June to 11th then 25th June. Well since writing that another letter arrived changing it to 9th July and a week later another letter changing it yet again. This time the appointment date actually fell on my son's birthday so I got strict instructions from him to change it It is now arranged for September - 3 months from it's original date - or at least it is unless I get another letter changing the date once again. Anyone else had so many changes?
Capricorn

stickywicket

Crikey! That is a bit of a record. I assume he is not too bad right now and I hope all goes well when he does get there. Please wish your young man Happy Birthday from me when it arrives

I hope you, too, are keeping well, capricorn.

capricorn

Hi - your assumption is correct Stickey Wicket my son has no problems at present with the JIA which I'm grateful for as I'm sure he is. I wish give him your birthday wishes when the day arrives - thank you.

As for me I'm not bad - think I am starting with a cold today, so will have to wait and see what it develops into. My brain is holding out though (touch wood)- next brain scan Aug 2015, so no doubt will get anxious nearer the time. Thanks for asking.

Hope you are well too,

Got to return to work now, so bye for now,
Capricorn
Just re-read my post and perhaps my brain is not functioning too well - 'wish' above is supposed to read 'will' - lol

stickywicket

Thanks for the update, capricorn. I hope the cold doesn't materialise. The very best for August. ((()))