tom's update

lare73
lare73 Member Posts: 154
edited 9. Feb 2011, 10:31 in My child has arthritis
hi all,

i havent been on here for a few days as i took tom away, just him and me and had big chats about the past 2 months and his diagnosis, this went well, he is slowly coming to terms with it all.

he is down to 10mg of steroids a day, but the pain has come back with a vengance.
saw rh dr today, tom is going into hospital on thursday to have 9 joint steroid injections under a general anaesthetic. gutted.
he is to have crutches as he isnt walking far and maybe wrist splint, right hand is causing him pain, after 1 week of school, so hope this doesnt last. he is starting mtx on friday this week, 20mg tablets. still on oral steroids and pirioxicam, and dihydracodeine.
the steroid side effects are a bit better now on a lower dose, but his pain is not controlled well now.
will this all ever end! hope your all having a better day than us :o
clare x
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Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Poor Tom, and poor you. It is a lot to come to terms with for all of you. I wish the steroids were controlling his pain better: I have just dropped to 10mg per day and my levels have risen too. Perhaps the steroid injections will be the boost he needs, plus starting the meth. I will be thinking of you on Thursday andd I sincerely hope it all goes well. Take care. DD
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Poor Tom. He's having a right old time of it. I'll keep my fingers crossed that the joint injections work for him. I know they don't work for everyone, but my daughter went into theatre not being able to work and 48 hours later was madly charging around like a normal 2 year old.

    The GA is scary the first time. I remember how it felt. Good luck to you. Let us know how it goes.

    Andy
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    evening all.
    well, what a day, im shattered :roll:
    went to the hospital, tom had 10 injections in total under a GA.
    we got home about 6.30, he is sore bless him, had a hot bath, and sat in his pj's, lots of cushions and the poorly blanket :)
    he is aching in the joints injected and needed painkillers for it.
    he was super brave and i was very proud of him, im sure i wouldn't have been so brave.
    was lovely to meet lucy (anniesmum), little annie is beautiful and also super brave.
    we are grateful to all the lovely nurses and doctor, making it a positive experience, and i think my headache i have is due to the cute little boy who liked shouting and trashing the ward! :shock: :lol:
    hope your all well today, will check in tomorrow
    clare x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Injected joints are sore - it's a different pain to the usual, so please make sure you keep him well-supplied with the pain relief. Poor lad - is it his first meth today too? Or am I muddled? Probably the latter! My best wishes to you both and I hope he starts feeling brighter soon. And lare? Well done to you. It's not an easy thing to go thro. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi there.

    yes its first mtx tonight, making his favourite tea (curry :lol: ) before the m-time - he is very sore from the injections yesterday, had a day cuddled up watching movies and pain killers for snacks :shock:

    tom is just taking it out in his stride, its me whos anxious, so hiding it. i am worn out, i have taken the weekend off work, as not sure how he's going to be, so just incase i will be here for him.

    happy friday to you all, keep warm and smiling :D

    clare x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Of course you are going to be affected - you are on the outside looking in, which is far harder than being on the inside looking out. I am sure you are doing a wonderful job of looking after him, and the rest of the family - I hope that someone is also there to keep an eye on you. Good luck with the meth - doing it at night is a good thing as it gives the chance to sleep through any yuckiness - tho yuckiness is not guaranteed! Although I am not very good at these may I please offer you a hug: (()) DD
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    hugs I hope everything went smoothly tonight. It's always scary starting a new drug she started mtx in January and I was scared/worried/anxious then now I'm doing it all over to start Enbrel.

    Kids really do take things in their stride and never seem to worry/fret as we do. As long as we're there for them when it matters most that's all we can do.

    Michelle xxx
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi everyone

    well, last night was ok, tom woke a couple of times and had tummy ache this morning, his joints are all feeling better although the thumb, knee and shoulder are not as good.

    he says he feels weak today and is still in bed, could this be the mtx? im guessing the tummy ache is a side affect too.

    the weather is a bit bleak here so think we will put the heating on and cosy up today.

    before i go, can i just say thank you to you all. this forum is keeping me sane at the moment :shock:

    take care and keep safe

    clare x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Leave him in bed. Joint injections are horrid, the pain is quite different to the usual, in my experience, especially when theyu are drained first. The tummy could be the meth - I can't remember his dose, sorry, but it is heap-big-powerful medicine and does unsettle many people. He needs coddling. And so do you, so send the rest of the family out somewhere and snuggle down with your son. Hey - fantasy world or what?! :D Thinking of you. You are doing OK lare, you are doing fine. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi dd, he's on 20mg of mtx.

    how are you feeling today??? better i hope.

    happy saturday to you :D

    clare x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    20? Well, that's a pretty high dose - they must use something more dilute for children. I hope he recovers OK. Me? Sweet of you to ask but I shall not reply - suffice to say things could be better. Take care and have a good week-end. DD
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi Clare
    How are you and Tom doing?Has he managed to go to school today? How is his pain?

    Annie back to school and a lot brighter. Fingers crossed for a better week.

    Just wanted to say that the first few times Annie had mtx she had episodes of feeling sick and complained of tummy ache but that has settled down now. Hopefully Tom's body will adjust. An adult who I know was on the tablets drank lots of coke the night he took it as a way of helping his symptoms......????

    Take care of yourself Clare - I prescribe a treat for you.

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

    well, tom has gone to school, he is doing really well, most of the aches have stopped now. he keeps getting a low grade fever but paracetomol seems to sort it out. his tummy upset has passed and doesn't feel so weak.

    he was actually cracking jokes last night so you never know we might get the old tom back! :o

    hope your ok, glad annie has gone to school, so fingers crossed we are on the up :D

    take care
    c x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    This is good news - I am pleased for Tom, and you. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    thank you dd, he's come home from school and had a good day, achey towards the end of school but coped well.

    hope your well today

    clare x
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Annie was achey and very very tired!
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi all, just got in from work and just checking the forum.

    tom has not had the best day today, other joints hurting now, why why why???? rarrrrrr .....and breathe.

    he tried to run bless him at school, not a good idea, told him to go steady, his hands are also hurting.

    i have had a bad day at work, bloody managers, i work for the nhs and had to take 2 days off with thomas last week as he was post op from steroid injections, he was feeling rubbish so rang work to a day before the hospital admin and explained what was happening and i needed to be with tom during and after, they said to stay off.
    Went to work today and they said i have to take annual leave and could not have carers leave as i told them in advance!! i see this now as encouragement to keep these things to myself and ring in on the day, letting my colleagues down and the patients but getting paid for my enhancements ( you loose these whilst on holiday)i feel very angry about the whole thing, family-friendly establishment? i dont think so!
    sorry for the rant but i needed to offload so i can hopefully sleep tonight, i am so tired...
    hope your all feeling better than i am today.
    c x
  • Rainbow77
    Rainbow77 Member Posts: 275
    edited 30. Nov -1, 00:00
    Hi

    Sorry to hear about your day. It does not seem right that when you phone in advance honestly about why you are off, you have to take it as annual leave. I guess you know now what to do in the future - but it does not seem right.

    You are doing a great job of looking after Tom, I know the last few weeks have been really tough. I hope you find some 'me' time for yourself, whatever that is.

    Have a lovely hot bath and into bed.

    Take care

    Fayann xxx
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Ah Clare - that is too bad for Thomas and you. I hope you are in bed and asleep now but if you are worried you must call Dr Wood - he is so receptive to being spoken to as he relies on us Mums to keep him updated.
    The worry just goes on and you cannot turn it off however much you want to. All you want is a bit of understanding and you would expect the NHS to do that - I'm ranting with you.........!!!!!!!
    Thinking of you.
    Lucy
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hello everyone,

    i hope you are all well today, im afraid i am negative again today, it takes alot of effort to fight it.
    tom's hair has started to fall out, im hoping as his has thick hair it wont become too noticeable, hes very upset about it and i have reassured him thats it not permanent and that it might stop soon, hes on week 2 of mtx, the sickness isnt as bad as last week, so must feel positive about that.

    it seems to try make our children better we have to first make them worse, what a horrible cycle this is.

    sorry, i will come back later when i feel more optimistic x
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Don't worry Clare. I think we've all been where you are. It's horrible to feel so helpless and everything you try has a side effect.

    Best wishes to you and Tom. I hope the MTX starts having some good effects soon.

    Andy
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It is ups and downs lare, and mostly downs, truth be told. This is a foul disease with foul meds and foul side-effects. I am sorry he is already losing his hair, but it won't all fall out, of that I am sure: if he does have thick hair, so it hopefully won't show that much anyway. Is he on folic acid too? I know that is what the adults usually take alongside meth, to counter-act the side effects, but I don't know if the same applies to the youngsters. You come and tell us how you are feeling - it eases the pressure on you, people here will understand, and it will help you cope. Venting is the one of the most valuable aspects of these forums, so don't be afraid to moan! Thinking of you both. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    bloody down day today :(

    poor tom, woke up this morning and couldnt open his eyes due to a headache from hell, with a temperature, i sent him straight back to bed and rang work (oh the joys of work).
    he's stayed in bed most of the day, he got caught in a heavy down pour yesterday on his way home and got soaked, so kept him warm and snug today.

    he seems better this evening, infact he's blowing raspberries at his baby brother, so positively perky :lol:
    hopefully he will go back to school tomorrow, still riding the rollercoaster

    clare x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Sorry lare, I missed this as I have been going thro the mill a bit myself. I hope he has recovered, he has to be sooo careful about colds etc when on meth as his immune system will be compromised. I wish you both well. DD
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi

    hope your feeling better dd???

    tom is mediocre today, felt sick on and off and looks tired, back hurt but think it might be muscular as its beneath his shoulder blade where it aches.

    take care everyone x

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