Annie's update

anniesmum
anniesmum Member Posts: 102
edited 15. Oct 2010, 08:16 in My child has arthritis
Annie's arthritis is so determined and will not give up - so frustrating poor little thing. We have been back to rheumy and he thinks it is time to do joint injections - 5 in all. Thanks for all the advice on the "steroid injection thread" I posted a while back. She is defininlty having it under a general and that's tomorrow! He is hoping that this will help control the arthritis more as she is struggling on the lower dose of steroids and the mtx is not doing its magic. Annie obviously has taken this in her stride and is as stoic as ever - as usual it is me that is struggling to come to terms with it all - why will it just not leave her alone?

Only thing I would say that this site is so reassuring that not only is Annie not alone but neither I am in this mad Arthritis world!!

Hope everyone else is having a good day.
Lucy
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Comments

  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi lucy,

    thank you for the chat, it helped, i am feeling low today as i am scared about the mtx, putting toxins in my boy. i dont think i realised what mtx was, its hit me hard.

    i look forward to seeing you tomorrow, just wish it was under different circumstances.

    clare x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I hope all goes well for Annie. Let us know the outcome. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Best wishes for tomorrow. Is Annie bothered about missing school?

    Is there lots of upheaval for you and the rest of the family in getting her to hospital for general?

    Hope I'm not being too nosy, just interested to find out how other people are dealing with all of this stuff.

    Kath x
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Thank you all for replying and being there for me and Annie.
    Clare - I am so pleased there is a friendly (if not met before) face there tomorrow. Like you I feel anxious about everything to do with Annie at the moment. You are going through alot and I have been thinking about you and Tom today - crutches, splints, pain, mtx - you have a lot to get your head round.
    DD - thank you for being there for us Mums - taking time out to read and reply to us makes a difference - you are so warm and reassuring, especiallly as you are going through so much.
    Kath - yes, definite upheaval at this end for tomorrow. Annie taking all in stride and has got used to missing odd days at school. Older two need organising and picking up by someone else. Also need to explain to them what is happening and reassure them that their little sister will be ok etc. Also dealing with grandparents and other peoples emotions. Very tiring. Annie's teacher was visibly upset by the news yesterday - managed to cry on her!!! Cried on another friend yesterday - all too much so vowed to use this site to off load even more as all very unlike me! Sorry, but thought best to warn everyone.
    How is your little girl doing - is it still to early days to know if embrel (?) working?
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    You are not only dealing with your daughter, you have everyone else too. It's very tough, and you need a safety valve and that is here. I don't have a clue how you parents cope, but other parents will know and they will be there for you. I can see it from the child's point of view tho - having had a very sickly childhood myself I can envisage what they are going thro and that is humbling in the extreme. I will be thinking of you a great deal, and lare and Tom too. It's a big week for you all. Thank you for your kind words. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • marion1952
    marion1952 Member Posts: 996
    edited 30. Nov -1, 00:00
    Hello Lucy

    Just to say I hope everything goes Ok for Annie tomorrow.

    Marion x
    (Adult RA sufferer!)
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello anniesmum. Thinking of you both. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    What a couple of days - Annie had her joint injections and feeling sore and then rough from the anaesthetic. She found the whole experience a lot harder than I thought she would - on reflection hardly surprising given the circumstances. Up to now she has taken everything in her stride but she was very cross/teary in hospital and at home last night - "I am going to have this for ever and I hate it" " You don't know anything, Mummy, because it isn"t hurting you".
    Then tonight she was unusually upset over the mtx injection. I think she is just so fed up with it all. I am shattered and feel arthritis weary so she must feel even worse. Just wish I had a crystal ball and could tell Annie what was going to happen in the future.

    Bonus to the yesterday was meeting the lovely "big" Thomas and Clare. Annie even wondered how his first mtx tablets went - she said "poor him I bet they taste yuk". Thanks Clare - it was good to see you there and I can't believe how exhausting the experience was but I agree Dr Wood and nurses all fab. Fingers crossed that this ordeal will do the trick for our little ones!!!!!
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi lucy and everyone.

    well, i am on my way to bed but thought id post to say, tom had his mtx, and gone to bed ok. no signs of anything nasty yet. he's still sore from injections, but coping well.
    so sorry to hear annie's not so good, bless her, fingers crossed the injections will begin to work for her, i have been thinking about her and have been telling my oh and family how lovely it was to meet you both. thomas was saying how nice she was, he is a bit shy and awkward when he meets new people.

    good night to all and may we all have a restful sleep :o

    clare x
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Hi to both of you hope annie and tom are doing greta now, is it Dr wood from leeds general infirmary? Phoebe see's him he's lovely.
    She used to be on mtx injection then she started on them fine but on 18th june was taken off it early due to paddying like annie i think she got fed up.

    It's got to be hard for them being prodded and poked all the time. On 7th oct phoebe has to have another joint injection in her thumb. Dr wyatt decided it didn't warrent restarting mtx just for one joint, she also said phoebe was flat footed, she wants to see her in 3 month.

    Phoebe has had juvenile idiopathic polyarthritis since may 07, does get slightly easier as time goes on especially when medication starts to kick in.

    Hope everything works out ok.

    Michelle x
  • anniesmum
    anniesmum Member Posts: 102
    edited 18. Sep 2010, 04:13
    Well - a good night sleep has done everyone the world of good in our house. Annie seems alot brighter and chattier this morning. Joints all seem happy, as a result I to, feel a lot brighter. Still complaining of back ache???

    Clare - well done to Thomas and well done you on mtx tablet taking. Do hope you all have a good weekend and any soreness starts to go. Annie said she felt shy on Thursday aswell and generally "off it" - not a normal meeting situation for anyone!!!

    Michelle - yes it is the same DR Wood at LGI. He is great and Annie likes him to. Don;t know Dr Wyatt though. How old is Phoebe? She and you sound like you have been "at" this arthritis journey for a while. How have you managed? Annie is 6 and has Systemic JIA. Appeared from no where and 9 months later we are still trying to get her off the pred! Have just looked up polyarthritis - poor Phoebe. Have a good weekend to you both.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Kayleigh was the same after her joint injections. Very grumpy, fed up etc. Since then the mtx injections are becoming a nightmare hence the dreading starting another injection of enbrel.

    I must admit though the benefits from the joint injections have worked wonders especially on her knees, seems this is the kick up the bum (so to speak) that was needed unfortunately it hasn't worked so well on her wrists and jaw and i'm not sure on her hips but she's moving a lot better.

    I hope you both start seeing some benefits soon hugs

    Michelle xxx
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi Anniesmum

    Glad you've got all joint injections over with - hope all is still a bit brighter for you all and stuff is settling down in your household.

    Betty doing well - walked the whole way to and from tube stations/Great Ormond St without a complaint or a moan or an ask to be carried last Friday - a complete change, we've done that trip at least 15 times over the last 3 months and we'd either do it at a snails pace or we'd borrow a pushchair.

    Enbrel seems to be working it's magic (haven't I changed my tune?) I swear there was a difference after the first dose, then she has a bit of a dip as it falls due again - she's had three now and is tolerating the procedure very well, so far.

    Keep us up to date with how Annie and you are getting on
    Best wishes Kath
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi Kath - what lovely news for Betty and you i am so pleased the Embrel appears to be working and so quickly. What a time you both have been having - our babies are such a worry but at least when they are brighter we have a chance to recharge and feel brighter also. Annie has gone back to school today which is great - had a really quiet weekend with injected joints feeling sore and both of us feeling very tired but already she is in a better place. Here's hoping for a better week. Lucy
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I hope Annie has survived the day and is now home and resting. Thinking of you all, DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Thank you DD - yes all well - tired and achey but good. thank you once again for thinking of us.
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi Lucy

    How's week going?

    We had a funny start to the day - Betty struggled to wake up for school then complaining that she wasn't feeling well - feeling sick and her neck/throat was hurting - my immediate (internal) reaction was, poor baby, let me wrap you in cotton wool and keep you at home with me all day... Then the sensible parent took over, looked in her mouth for signs of sore throat (none) gave her a little dose of paracetemol, persuaded her to eat breakfast - I decided to do grocery shopping after school drop off so had an excuse to take car! Had a word with teacher, saying that B wasn't feeling well when she woke, but HAD eaten breakfast and seemed to be ok, and would school ring me if they were concerned.

    So have been double checking phone all morning and feeling slightly guilty for making her go in - but when this has happened before teacher could report that she'd been fine all day. I don't think it was JIA related - joints and movement seemed fine.

    Hope Annie enjoying school and back to running around with pals.

    Anyway I'm putting off household chores, there must be some paint around here that I need to watch dry...

    Best wishes
    Kath
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi Kath,
    Sounds like a typical morning in my house at the moment. I hope Betty ended up having a good day at school and you didn't get the phone call.
    I know what you mean about your instant reaction is one of wrap them adn keep them at home - the mothering instinct is so strong, isnt it - I have to say I could do that lots of mornings but Annie seems to "warm up" by the time I have dropped the big two off and trots off quite happily. Its me left worrying - mainly wether her stamina will stay up for the day. She is back to needing a rest at lunch times, poor baby.
    Anyway i am off to finish tea and check the pasta hasn't boiled over (again).
    Lucy
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    I so know what you two mean. Kayleigh is the same and every morning complains and doesn't want to go school. Sometimes she's even moaning either in the car or as she's going in the door, but school says she will sit and read for a bit then suddenly be full of energy. Never stops me worrying I still won't go that far away "just in case" either oops.

    Michelle xxx
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Just thought I'd do a little update on Annie - she is alot brighter. Friday morning was the first school morning this term that she was up and got dressed herself. She had her lovely smile back and almost bounced into school - how fantastic. The weekend also did her good - lies ins, lazy days and riding her bike over farm tracks - amazing how the simple things make your heart sing!

    So far this week her energy levels have stayed up - we will be reducing the steroids this weekend and everything will be crossed that she'll cope on the lower dose. Trying not to think about that too much and just make the most of a bouncy, happy Annie.

    I am going to Spain from thursday to monday with girlfriends - luckily Annie in a good place just now as I feel guilty enough at leaving her and the big ones, but I have to admit I am so ready to have a break from everything. OH away alot and soon will be away all week every week so I recognise the fact I need to recharge and at the same time give my family a break from me!! I mean, I get on my own nerves at times so I am sure I do theirs.

    Hope all ok with everyone and their little ones.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Oooooh! I hope you have a lovely time - you DO need a break and you DO need to recharge, so have a good time and try - silly I know - to leave it all behind for a while. Your girl will be in good hands, so relax. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    lucy you lucky lady! sneak me in :lol:

    so please annie is perking up, sounds like it was worth it, fingers crossed the reduction in steroids goes ok.

    i am so happy you sound much more positive and happier, your right to recharge, enjoy the time -out, be easy to say dont worry about home, but that would be silly, we're mothers :lol::lol:

    look forward to hearing all about it next week on here xx
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi Lucy, didn't manage to get on here to wish you well before you went - hope your break everything you wanted it to be and you got a chance to recharge your batteries. In my experience it does everyone in the family a bit of good for Mum to have a break.

    It's so good to hear how well Annie is getting on - lovely to think of her on her bike out in the fresh air - things are as they should be. :D

    Can imagine how you felt with poorly other daughter and preparing yourself for worse possible scenario (imagining appendicitis)- I suppose it's all these spate of doctors/consultants/clinic appointments that have, possibly, serious and longterm implications - it ends up being "normal" for us. Hopefully if Annie and Bet carry on the way they are going we'll get a chance to get out of the pessimistic loop.

    I'm conscious of having to be aware of DS, Jamie 8, not missing out on stuff. Bet & J used to do a few after school activities... swimming, gymnastics and drama and what with summer holidays and Betty out of sorts, we let all the memberships slip. I realised that J not doing anything away from us and school - so managed to get him into a local Cubs pack and he starts tomorrow. We're both v excited, I hope it lives up to expectations.

    Anyway, that's my coffee break over, back to the grindstone - off up to local hospital for mtx and enbrel jabs with B after school pick up today- have heard through the grapevine that we no longer have to troop up to childrens ward for enbrel - lovely community nurses can now administer both injections - hurrah :lol:

    Hope the sun's shining on you all
    Best wishes Kath
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    radders wrote:
    Anyway, that's my coffee break over, back to the grindstone - off up to local hospital for mtx and enbrel jabs with B after school pick up today- have heard through the grapevine that we no longer have to troop up to childrens ward for enbrel - lovely community nurses can now administer both injections - hurrah :lol:

    Hope the sun's shining on you all
    Best wishes Kath

    Aww that's great, we have a community nurse who comes out to give Kayleigh both of these injections. We get methatrexate from a script from hossie then pick it up from local pharmacy, and Entanercept is delivered direct to our door from Bupa, our lovely paed community nurse comes out every friday morning to give her the injections. This works for us even though she hates soo much having them done but it's working.
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    illihor wrote:

    Aww that's great, we have a community nurse who comes out to give Kayleigh both of these injections. We get methatrexate from a script from hossie then pick it up from local pharmacy, and Entanercept is delivered direct to our door from Bupa, our lovely paed community nurse comes out every friday morning to give her the injections. This works for us even though she hates soo much having them done but it's working.

    Hi Michelle

    Our lovely community nurses run the clinic at the local hospital, so we still need to travel up to Harlow, but now I only have to pin Bet to me once while they administer both jabs - rather than once for community nurses then once again for ward nurses. I re-read what I had wrote and could see that I hadn't been particuarly clear.

    Bet's starting to be a lot more vocal and resistant to having injections but I'm afraid that I'm being even more no-nonsense about her having them - I just have to remember the state that she was in earlier this year, vivid memories of how ill she was. While she's having them done I just hug her close and try and comfort her and talk about how well they are making her and how I don't want her to be so poorly again.

    I am slightly concerned about long term implications and the possible effect on her mental health and our relationship - but the way I see it is that it's so important to get her physically healthy we'll address the other stuff if it happens.

    There's me again, going completely off topic :roll:

    Best wishes to you Michelle, hope all good for Kayleigh and siblings. Hope that session with nurse this morning went well.

    Kath x