JIA and School.......

Hi Stickywicket,

Thank you for your kind words about my daughter.

She is not a complainer, she has a positive outlook, she is great!!

She has had feelings of sickness with Methotrexate and now administers it herself subcutaneously (injects into her stomach muscles), feels sick and wretches but prefers it to tablets. She has had down times with steroids and has had fluid taken from her knees. Approx two years ago when the Methotrexate was not fully working she was given Hydroxyquine in addition. She has had lots of colds and ear infections, she seemed to escape swine flu although she was really unwell for a day around the "scare" time....and does not seem to have got freshers flu. Is she lucky or is it her approach.

I have tried to wrap her in cotton wool, but she seems to be proving that this is not the answer, she is not letting the disease rule her. As I previously said Uni life, doing what students do, yes nights out and parties, together with all her outdoor clubs and a course that she love is really helping, two years of Arthritis controlled by Methotrexate (she has now stopped the Hdroxyquine), she has said she thinks being really happy is helping her be we'll, and good for her, it's really lovely to see, smily pictures of a young lady up a mountain with friends.

I don't mind if my thoughts become a thread, I just feel Seeing my daughter as she is now, I wish I had done things differently, had I had a forum such as this to air and share, some of my ideas come from reflection, as children grow so quickly every moment is precious.

I have ideas for other hints and tips, making the most of hospital visits, Including siblings, more school tips, coping as a parent, I have she'd many a tear and still do. Help comes from the most unexpected places.

And to you, Stickywicket, it makes no difference to me if you we're a sulky tearaway, I think I was moody as a teenager, you are very kind and take time to talk to others.

Thank you again

Thank you, you are very intuitive. I appreciate you sharing your experience of different drugs/medication/meds (oh that's how you spell hydroxychloroquine, I must be careful to put in correct info, I will edit when I work out how) as you know it is scary when they are first prescribed, and yet a god send when you realise they can stop the Arthritis in its tracks, thank you to medical science!

My daughter has her flu injection regularly now....another tip for parents don't assume he/she will be automatically on the GP s list take the lead and ask if it should be done, her Uni GP seem to have it sorted!

Does everyone know as well as the Student Finance England you can get financial assistance, it's not too daunting to do, you have to go for an assessment and the people were very kind:
https://www.gov.uk/disabled-students-allowances-dsas
"
Overview
As a higher education student living in England, you can apply for a Disabled Students’ Allowance (DSA) if you have a:

disability
long-term health condition
mental health condition
specific learning difficulty such as dyslexia
The money you get depends on your individual needs and not on income."

My daughter got a little extra towards having her own bathroom (as she has to inject Methotrexate).

Don't be put off applying if they are on a well spell BECAUSE...thy offer things like cost of printing, if books are too heavy, or transport cost if a bad spell etc BUT you have to submit the claims in retrospect, so if you feel it is not needed you don't have to claim it.

The grant can also cover the cost of support from a helper in the library or a chair for their room, and other "stuff".

I like your comment about the steroids....my daughter always eats like a horse...worth keeping a quiet eye and if you have a teenager, siruptitiously watch moods, maybe a sneaky email to the pastoral teacher to keep a look out, they are really very good if schools have them, I have found out more about them through my second daughter who is much more chatty!!

My daughter was advised to use steroids as a preventative measure when she wanted to do her Duke of Edinburgh Expedition, it did the trick she bounced up hill and down dale!! As I have told you before she hill walks...ALOT now and at first for longer trips she asked for steroids, as advised BUT presently, as she has got quite fit she is not asking for them and fingers crossed so far so good!

I hope you had a fabulous trip to USA and soaked up lots of cuddles with your grandson. I'm glad you had the Uni experience (and my daughter is too, the best thing she has ever done....so far) and daughter no. 2 to go next year. What a proud mum I am and to think I left school with 0!!!!

Independence is so important. Any sign of a flare with JIA in your child don't be afraid to get straight to the GP, or better still contact rheumatology, get it under control, prevent damage to those precious joints.

Thank you Stickywicket for listening.
Respect and heartfelt wishes to those living with Arthritis.
Parents keep asking questions, time flies by very quickly.

Thank you Stickywicket,
Yes good for her.

It was nt always this way, the torture of seeing her in pain in those early days pre diagnosis...this followed a random injury to a calf muscle...this may have been the trigger? Waking up each morning screaming in pain in her ankles..then her elbows were bent.... Hard to type with tears in eyes..

Have to say, first symptoms October, diagnosed with JiA by January...GP and Rheumatology were excellent at the time you don't think enough is being done quick enough, but I realise it was now...eight cortisone injections under general was her initial "scary" treatment...

She could hardly walk up the hospital corridors...they let me go into the theatre until she was out...she came back to the ward and sat cross legged on the bed WOW that was such a relief for her and Mum and Dad.

When the injections started to wear off they knew then more intense treatment was needed.

I think steroids followed and then a gradual increase of Methotrexate.

There have been some fares since then with some injections needed and occasional steroids....

but as I have said before Yippee a well time. She is an excellent role model for young people with JIA, she certainly inspires me, it is just great.

Sorry, I don't plan what I type.

Sticky wicket I appreciate you sharing of your experience, it helps me as my daughter is now a young adult, I have many niggles.

You are quite right, tip of the day don't ignore the quiet ones...and asking how you are might not be the right approach, sometimes it better just to do kind things for your child, fluffy socks and slippers and a nice cosy dressing gown, are appreciated, she does feel the cold, student accommodation....say no more...she keeps a spare dressing gown and slippers at a friends house where she often stays, her favourite shops are outdoor clothing shops, she has invested in a down jacket, it is so light and yet very very warm....she looks after her out door kit boots etc as that is her "thing".

Oh any knitters out there...wrist warmer glove, hats and scarves really are appreciated .....thank you to Granny for our supply.

Keep warm, keep Happy and laugh as much as you can, my daughters prescription for wellness.