childrens workshop

lare73
lare73 Member Posts: 154
edited 2. Nov 2010, 18:01 in My child has arthritis
hello everyone, im back from my holidays :(

I had a little bit of withdrawal with having no internet for 8 days!

but back now, how is everyone??
Tom isn't so bad this week, we are back at the rheummy tomorrow as his joints are a bit tender and his mouth is really bad with ulcers, think he may be going onto injections.

I have done it! official, young persons and families workshop will be held on the 18th dec, 10am-1pm at leeds playhouse, DIAL, Connexions, LGI staff, Arthritis research uk, Drama and singing teacher,and .............. a leeds rhino's player (maybe even 2!). christmas raffle, refreshments and all this for free! please come along if you live in the north region, invites to be sent via LGI staff or if you dont use that hospital let me know and i will post you one out, tell everyone, i am doing newspaper interview and it will be advertised on realradio. :D

c x

Comments

  • Rainbow77
    Rainbow77 Member Posts: 275
    edited 30. Nov -0001, 00:00
    Wow Clair

    Well done. It sounds fantastic. I am sorry that I live on the south coast, it is a bit far. But will be thinking of you on that day.

    Fayann xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Well done to you, lare, that is quite an achievement. I am in Suffolk so too far away but I hope it all goes to plan and that everyone has a grand time.

    Poor Tom, I am sorry to hear about the ulcers, that must be so uncomfortable. When are you next seeing his rheumatologist? Has the meth had any effect on his arthritis or is it still early days? If my memory serves me right it's about eight weeks now, I think. I'm probably wrong tho, I usually am. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -0001, 00:00
    hi all,

    400 invites to go out for the workshop, blimey :shock:

    dd, yes its been 8 weeks, how lovely you remembered, we have seen the rheumy today and great news, Tom's joints are not inflammed!! the mtx is working, they have prescribed 5mg follic acid every day to help with the mouth ulcers, hair loss and sickness, they dont want to swap to the injection yet as the mtx is working albeit nasty side effects.
    He has been put on ondansatron 8mg for the sickness, these must be a pricey drug as they only give a few, dr said he can have then every 8 hours for the 2 days following mtx as he is very sickly.

    He needs more physio as he joints are over extending now and his muscles cant cope as they are very weak, never straight forward, but must stay positive.

    hope your well and everyone else.
    clare x :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    I am pleased to hear that the meth is having an effect: it is a shame about the side effects but hopefully the fact that it is doing something will ameliorate those a litttle and make them worth the struggle. The anti-nausea tablets should help - I know nothing about those - but I hope they do help him. The folic acid should make a difference too. I wish him well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -0001, 00:00
    were you not given folic acid to take 2 days after his injections to stop the ulcers??? I know we have to give Lucy it!!
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -0001, 00:00
    hi lucysmum,

    tom got the folic acid today, nobody mentioned it before, hopefully it will help.

    im continually learning about this disease, so pleased the inflammation is subsiding, but with the good comes the bad and his joints are over extending now and his muscles are weak and cannot support his joints, so intense physio needed.
    it seems these medicines do work but with side effects that are difficult. never ending :roll:

    c x

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