JIA and School.......

MumV Member Posts: 71
edited 28. Mar 2013, 18:47 in My child has arthritis
:D 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. :lol: 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 through "things":

How to inform the school: Print off information about JIA, and quote the facts about the low numbers of children who are diagnosed..12,000 I believe, put in a personal bit about how it is affecting your child.

At secondary School give a copy to each of the subject teachers, it will save the form teacher a job, and satisfies your mind everyone is informed.

Speak directly to the exams teacher to discuss access arrangements, they are fantastic, you should get extra time and/or possibly rest breaks. This also means the exam will take place in a smaller room which will be warmer, my daughter found the large halls to be too cold for her sitting long periods.

Get a "let out of class early " permission arrangement for painful/times, to avoid crowds/allow extra time to get to next lesson.

Let the form teacher and pastoral teacher (as well as nurse) know if steroids are being taken, they can inform others...as sometimes these can affect mood.

Children with JIA, are bright and very caring of others. My daughter is my heroine I love her dearly and am so so proud of her, despite tough times, she is achieving and continues to be an inspiration to me.

That's all for today, I will share any other useful suggestions as I think of them.

Empathy to all other parents. And my heartfelt respect to all with any form of Arthritis. Kind Regards. Mum V.


  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    This is a lovely, kind, positive thread, MumV, and I'm very pleased your daughter is doing so well. I think your hints about school seem very useful and should constitute the start of a 'sticky thread' ie one that remains at the top where all can see it. Would you mind if I asked the Moderators about this?

    (By the way, not all children with arthritis are 'bright and helpful'. I was a sulky tearaway :oops: :lol: )
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    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
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    ‘She is not a complainer, she has a positive outlook’. Now my old GP, long since retired, would have asked “And who does she get that from?” :) She’s obviously been set a good example.

    The only ‘down times’ I had with steroids was getting off them. I love the little beasts. They make me feel like an Olympic athlete :D I do meth and hydroxychloroquine with no real problems. I think luck does come into it but I do ‘take out insurance’ by having my annual flu jab and I had the swine flu one too as we were going over to the USA to see our new grandson. I think ‘freshers’ flu’ must be a new one since I was at uni although it makes sense.

    I doubt there’s a parent alive who doesn’t wish they’d done some things differently with their children, whether or not they have arthritis. I know I do, but kids are resilient. They cope and adapt.

    I hope your daughter has a great time at uni and stays well. As you’ll see, parents don’t have the time to be on these forums daily like some of us ‘old-timers’. However, I’m sure they’ll appreciate your words of comfort whenever they do look in. I'll ask the Mods about a sticky.
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    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:
    As a higher education student living in England, you can apply for a Disabled Students’ Allowance (DSA) if you have a:

    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.
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    It sounds as if your daughter is living a full life. Good for her!

    As for your other daughter being more chatty - ah yes, I still hate being asked how I am unless I can give good news :roll:

    I'm afraid, posts can only be edited for a short space of time. I, too, have some spellings on record that make me blush :oops: and mostly much easier to spell than hydroxychloroquine.

    (I've PMd the Mods about a sticky.)
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    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.

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