JIA and making the most of hospital visits

MumV

" Hi, my daughter was diagnosed with JIA polyarticular and Hypermobility in year 8 at school and takes Methotrexate 30 mg, and is now in second year of Uni life. (Wrists, elbows, knees, ankles, joints either side of sternum and jaw have all been affected at some point or other).

She has had joint injections, steroids and at one point Methotrexate and another drug (name escapes me Begins with H at the same time, when the disease seemed to be really bad) presently only Methotrexate.

Fingers crossed everyone...the last two years free..her advice would be, be happy, surround yourself with friends,keep busy (for her, Pilates, hill walking, new to climbing and cycling a bit to get about and walking) of course lots of social events) and much laughter. And maybe being at Uni in a costal town??"

In retrospect I would like to share some ideas of possible ways to help other parents

They really take care of children with JIA, so you might have a few trips to the hospital.

Make it a positive experience from the outset, a colouring book or drawing pad and a book to read. Use the opportunity to relax yourself while waiting, it is valuable time, and could be time for 1-1 if you have other children at school. Take a drink for them. Support the hospital cafe on the way out if you can, it's usually run by volunteers, who are lovely.

Think about parking if its going to be often can you park outside the grounds, if walking is not a problem,and save some fees...for a stay on children s they may wave the fee.

It sounds obvious but thinking of questions to ask before the appointment...the number of times I left and wished I had asked..

Find out as much as you can about different conditions, but don't scare yourself with all the details. the Arthritis care leaflets were and still are very very helpful, easy to read and understand, I always read them, or collected them while waiting for appointments.


Don't underestimate the pain, wanting your child to be brave, it breaks my heart to recall my daughter saying,ibuprofen, diclofenac...for her, made no difference to pain, but it is good she was able to tell them as without the extensive treatment she has had/ is taking her joints would by now be damaged. For her it is worth persevering with sickness "feelings" with Methotrexate as it can be successful at controlling the arthritis my daughter swapped from tablet form to injections..her latest comment to the consultant on that was she often wretches before she takes it so now knows a portion of it is mind induced and she laughed. So courageous, so brave, I am eternally mindful of this.

As my daughter got older I wasn't sure if I should still go into consultations with her, she didn't mind, and the consultant it is very common for people to have a companion even as adults, Obviously she goes for most blood tests and GP appointments independently but consultations seem different.

I have learnt a lot from sitting quietly with my daughter, I learnt to look at her, and not at the disease....it overwhelmed my mind, I learnt to have the utmost respect for her and people living with Arthritis and other illness, for her I believe it has made her more determined to get on and do, more able to prioritise, suffering focusing the mind.
I also understand from these forums, for people living with Arthritis the need to talk to others in similar positions as only they can truly understand; my view point is that of a parent. No one should have to suffer, but they do. Control of Arthritis is crucial.

hannagoodwin

Hi, I am not a mum, I am a JIA suffer myself, and am 20 years old. I know that your post is for mums of us guys hehe, but I just wanted to say that I loved reading your post, it is all so true. When reading it it made me think so much of what me and my mum have been through and still go through. I am currently going through a bad flare up, and am back in my wheelchair but reading that just made me realise that 'I am not the only one' which is easy to think sometimes when its your family going through all of these things, and there is no one else around you who is.

Sorry for going on, basically I just wanted to say it is nice to (even though Im not the mum) be able to relate to your post.

Would be nice to talk to you, not just for my sake but also for my mum, if you would like to post back

Hannah x

MumV

Hi Hannah,

I am sorry to hear you are on a bad spell at the moment, I hope you are able to get the pain under control quickly.



I think I know how you feel, but from the opposite direction, You are almost apologising for intruding on "the parent page", and I feel guilty for being the one who needed the outlet to share my feelings !! :roll: I have gained such a lot, from the point of view of understanding by reading how people living with arthritis feel, live cope and share their experience. How long have you been living with JIA and which joints are affected for you?

There are some inspiring stories out there of young people living with Arthritis, I will look for the link and post....have you heard about the new centre for Adolescent Rhematology....they are looking for your stories, don't be put off because you are 20!! He he

Never forget there are only 15,000 children and young people in the UK living with Arthritis, you are special and will always be Eternally young as your diagnosis will always be "juvenile".

"There was a great article on BBC News Online on Monday about what it's like to have arthritis as a teenage and the work of Arthritis Research UK Centre for Adolescent Rheumatology. Thank you to Michelle Oliver and Emily Jones for sharing their stories with us. http://bbc.in/TGsnQk

'I am a teenager with arthritis'
bbc.in
The UK is to be home to the first research centre in the world seeking to
help teenagers affected by arthritis."

I've copied the above from Face book...hope Arthritis Care don't mind...I,m never sure if "care" and "research" are in opposition....yikes.

Any way I have lots more to say....daughter No. 1 is away at Uni...I did start to write on here to unburden all my angst and have tried my best to do it in a positive way to help others, as parents we always have regrets of how we could have handled things differently!!! But this has really helped me...I didn't realise how much I also needed to talk....

Stay young, be happy, surround yourself with good friends, keep busy, laugh a lot and when you can be active...my daughter prescription

Thank you for your lovely reply.

Mum V

OZange

Hi MumV,

Thanks for that great post. I love the idea of seeing hospital time as 1 on 1 time. All these hours in waiting rooms can be turned into special moments with just my little one. Maybe it is not the most beautiful environment (unless you like rooms full of chairs with cheap artwork on the walls ) and maybe not always the warmest atmosphere, but with some nice toys, his favorite book and a bit of cuddle time (if I am lucky ) we could make the best out of it.

Thanks for sharing your experiences in this forum. it really helps me as a mum with a young kid with JIA to deal with certain situations and answered a few questions already. Love reading your posts.

@Hannah: I really hope you are feeling better now!

Sending lots of warming sun from Australia!
Angela

MumV

Hi OZange,

Thank you, my posts are driven by, I wish I had done more, but I guess that's normal for any parent!!! So instead I turned my feeling into a positive and have tried to share possible ideas :idea:

JIA and school, comes from, I wish I had spoken to more people.....you have plenty of time to think of school......oooo do enjoy your 3 year old, what a fantastic age, proper little person, I hope his Arthritis stays where it is....better still goes into remission.

With you by his side, he is definitely on the road to something wonderful.

We have got exciting times ahead with daughter number 2 getting offers at top Universities...life goes on, lots of chapters, some planned some very, very, unexpected, and direction changing......some with so much excitement you want to burst, and others at the complete opposite end of the spectrum, that stop you in your tracks......

Thank you for the thoughts of warming, healing sun

We are still waiting for our snow.....

Hope it goes well on Monday.

Kind, kind regards

barbara12

Hi MumV
I don't often come in this section of the forum, but I just want to say how much admiration I have for all of you.
And I have read what you have wrote , and have really got an insight into the struggles of everyday,its so good of you to go to the trouble, and I am sure that getting all this down will be of some help to you, has well as the other mums
By the way I am 62 with OA , you keep up the good work , and your daughter is so lucky to have you xx

MumV

Hi Barbara,

Thank you for the lovely message. My mum has OA and lymphedema, I know she suffers but I have never once heard her complain (she is 70), I believe she was the one who was best able to talk openly and share tips with my daughter in the early days, she is so supportive of her and often thinks of things I might miss e.g. She bought my daughter a "topper" for her student accommodation to allow her a comfortable sleep.

My daughter is using some lovely soft wrist gloves she knitted for her exams.

I have worked for 9 years within a high school within the special education needs department, and have been humbled by many of the students I have supported, I currently work within a college environment with older students assisting them access there courses, mainly dyslexia.

Sorry I don't know why I told you all that...

I guess I want to show I have empathy with other people's positions my mum always made myself and my brothers see things from other
People's view point....I guess this skill has come to fruition in trying to understand how my daughter feels.

Kind regards to you Barbara and wellness wishes to all.