back to school!!!

lucymum
lucymum Member Posts: 113
edited 7. Jan 2010, 06:26 in My Child Has Arthritis
yippee the schools are back tomorrow!!!! I really can not wait with 3 under 8 it is a blessing.
I have to see the head ASAP when they go back cause Lucy was dignosed after the end of term so they are not aware yet, I justhope they continue to be as supportive as they have been so far!!
Lucy has been a bit on edge this evening, been quite stroppy to be honest!!!! So when she was put to bed early I had a bit of a tak to her, I got out of her that someof it was down to anxiety because school makes her pain worse!!!!! I really feel for her, I know how she feels I am in pain and have been since I was 11, but how do I get her to understand that her attitude is not the way to deal with her pain!!!!! It's really hard, i feel I have to punish her behaviour, especially with her being the eldist of 3 and my 3 year old thinking it's ok to copy her, but then feel that punishing her feels crule as the main reason she is upset is because of the pain!!!

Please any advicewould be gratefull!!!!
x x x x

Comments

  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hi :) ,

    I understand exactly where Lucy is coming from, I was dignosed at the age of 5 so therefore went through the experience of dealing with school. Its excellent that the school is suppportive, and I hope they carry on being so for you and Lucy. I was always anxious about returning to school after a holiday or being away because of being ill. I found that once I was at school, being with my friends and doing the work gave me a distraction from the pain.
    As for Lucy's attitude, It is very difficult to punish that type of behaviour, Im sure my mum went through similar situations with me (as I am the eldest and have 2 younger sisters). Also you cannot explain Lucys behavior to her younger sister due to her age. What might be useful is just keeping Lucy positive, talk to her about the positive things about her school and what she enjoys at school.

    Im sure once she is into the routine of school, although there will be bad days she will enjoy the good days more.

    Best wishes to both of you, Steph x x
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    thanks for the advice hun.
    I have hd pain due to a mobility problem from th age of 11, so quite a bit older than Lucy is, so it is hard for me to understand that side of it!!
    I went to see the school and talked to her class teacher about it. She was lovely and sad for Lucy!! She is a very lovely teacher nd is happy to do anything that will help, which is good, so now I just have to battle the head!!!
    Lucy seemed a lot more positive today when going t school, so hopefully giving her a little longer time in the morning to sort out and some positive prase helps!!
    My 5 year old, her little sister, is very helpfull and helps her sister out a lot, with socks and carrying things etc, and understands that Lucy is unable to do things that she herself can, thats lovely to see!!
    I wish you well hun and thank you for your advice!! x x
  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    No problem :)

    Thats sounds great, I wish my teachers had been more understanding while I was at school. Giving Lucy more time in the mornings is a very good idea, and also hearing how her sister helps her is lovely.
    On a different point I was wondering (and pease don't feel obliged to answer), as you said you have mobility problems yourself, is this arthritis ? And also, does Lucy have the same type as yourself?

    Bext wishes x x
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    hi stephi,
    yeh the way her sister, and little bro try to help is lovely.

    Myself I primarely have an AVM which is too may veins and arteries in my left knee. I have a very rare type which has caused me a hudge amount of pain and problems since I was 11. On top of that, due to the AVM restricting the join I also have arthritus!!!! Aparently the arthritus has made my 30 year old knee joint that of a decrepis 80 year old!!!!! Unfrtunatly nothing much can be done about it ad the doctors are looking into amputation!!
    Thankfully Lucy does not have this she has polyarthritus, and at lastvount it was in 30 joints and has been left undignosed so long it may have caused malformation to her knees which could be perminant!!

    feel free to ask any further questions as i will no doubt pick your brain too! lol
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Hugs Hun. Have you discussed with the school again about giving pain meds to help her through the day even if it's you going in to give it'll be better than nothing.

    I'm lucky in that in kayleighs school as long as it's been prescribed they will give meds so they give paracetamol at 10am and 2pm and ibuprofen at lunch time. This at least helps a little to see her through the day and they are great at letting her rest, sit on chairs for story time, assemblies etc. Of course with her only being 4 it's so much different and she is only in nursery but I'm sure they can help in some ways hugs.
  • stephibabe2
    stephibabe2 Member Posts: 60
    edited 30. Nov -1, 00:00
    Heya :D
    Oh Im sorry to hear about your knee, its no consilation but at least you can sympathise with Lucy. I hope it doesnt leed to amputation but I wish you the best of luck x
    I was dignosed with systemc arthritis when I was 5 so although slightly different to Lucys type, Im sure I could still have ago at answering any of your questions. Its nice to be an expert in something lol
    But honestly any question you have I would glad to try and answer. As Im in my teens now, I have probly gone through what Lucy may be only experiencing.

    Best of wishes to both you and Lucy
    Steph x x
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    illihor wrote:
    Hugs Hun. Have you discussed with the school again about giving pain meds to help her through the day even if it's you going in to give it'll be better than nothing.

    I'm lucky in that in kayleighs school as long as it's been prescribed they will give meds so they give paracetamol at 10am and 2pm and ibuprofen at lunch time. This at least helps a little to see her through the day and they are great at letting her rest, sit on chairs for story time, assemblies etc. Of course with her only being 4 it's so much different and she is only in nursery but I'm sure they can help in some ways hugs.

    because of all this snow etc. I have not been able to get into see the head aboutlucy,although I did get 5 mins with hr class teacher, which was good!
    Lucy and the teacer told all the kids n the class about her JIA and according to her teachr it went well. They have aso decided to allow Lucy to decide when to go out to play and when to stay in wita frien, which is good.
    As far as medicatinis concerned my cons has pescribed it over 3 toim slots as she is aware that the LEA in the area are not happy wit he schools giving to children, and as I am training and at college I can not always getn t lunch ime to do her!!!
    Hope all i going well with you x x