Update on Betty

radders
radders Member Posts: 42
edited 8. Dec 2010, 11:33 in My child has arthritis
Hi All, sorry haven’t been posting much lately – other life got slightly hectic.
Update on Betty, after three months on Embrel in addition to methotrexate, disease appears to be under control, no signs of active disease according to consultant who we saw on Friday last.
Also saw Opth, O/T and Physio; eyes are good, phew. O/T – she has very a very weak grip so we’ve got a lot of work to do with Theraputty, but lovely O/T has given us a new regime – Bet will do them during the ad breaks while watching TV, has only to commit to doing 10 minutes everyday, and given her some of the responsibility.
Physio could see evidence of weakness in leg muscles which contributes massively to leg pain when over-exerting herself, so new smaller regime to work to strengthening relevant muscles. Physio (another lovely NHS professional) expressed surprise at ambitious plan given to Bet in April, so some of my guilt lifted at failure to keep it up.

MRI scan in November (she got her Jellycat bunny for being brave :) ) showed inflammation in both jaws – so now been scheduled for steroid injection under GA, on Tuesday 14 December. Unusually for us they want us to be there the night before – Bet has previously been admitted as a day case for all procedures that she’s had under GA.

Feeling as though things are under control again – not just disease. Bet being a complete star with jabs and blood tests, but must admit that it does involve bribery. She gets a pound for every injection she takes without making a fuss – so £3 a week, then can spend it on whatever she wants when she has her blood test every eight weeks. I’ve had to rescind the “no more cuddlies in this house” rule for the time being, but on the face of it, it really seems worth it. She’s seems to be less stressed by the whole process and I certainly feel a lot more relaxed about it all. Will start to persuade her to start putting some of it in her bank account one day soon.

Getting injections administered has settled into a better routine – GP has now agreed for practice nurse to do one of the embrel per week – so a 10 minute trip out on a Monday rather than 90 minutes round trip after childminded children left. Only going to Harlow for MTX and Embrel once a week now, it’s such a relief, was getting to be an absolute weight on our backs, especially with dark nights and lousy weather, doing that trip twice in a week. – It still feels as though the GP has given me a great big gift!

I think that just about wraps it up - have been thinking of the posters and children while I haven’t been around – still thank my stars for the presence of this site – it’s a real comfort to know that we’re not alone – I know it helps OH too, he reads the posts.
All best wishes
Kath x

Comments

  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Kath - it is so lovely to hear that Betty is doing so much better - I am so pleased to hear you sounding so positive and up beat. So she finally got her Jellycat Bunny - delighted!
    It is even nicer to hear as I am not feeling very positive as I am really tired of Arthritis - poor Annie has had an awful cold and has been so low and was off school all last week - she has been really struggling this term. The little trooper has gone back to school today with her usual determination but characteristic pale face and black tired eyes.
    I am tired of worry - we moved onto Embrel 3 weeks ago and I dont think we have seen a noticable difference - we are back to the hospital tomorrow to see the consultant so will get more information after the blood tests. I dont know whether it is her cold or arthritis.
    I was also interested to hear about your Physio saying that Betty has week muscles - Annie has been complaining of muscle pain and I wonder if some Physio could help her, thanks for that pointer - I will ask tomorrow.
    The 14th sounds like an ordeal you could do without before Christmas - poor Betty. I am thinking that all of us parents and children shoud be prescribed a hot holiday. It was -14 here in Yorkshire this morning - no wonder Annie is suffering.
    Good to hear from you and I will take some positive vibes from you and keep going.
    Take care and thank you for your post today - it was just what I needed. Lucy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi radders, I was wondering how things were going. I am glad that she is coping with the enbrel - keep on top of the blood tests for that, and honestly there is nothing wrong with a little bit of bribery! I wish someone would bribe me - it's a right pain sometimes, being (supposedly) an adult. Good luck to Betty on the 14th - I really hope the steroids help. Season's greetings. DD

    t07117.gif

    Whaddaya think? I love him!
  • frankiesmum
    frankiesmum Member Posts: 20
    edited 30. Nov -1, 00:00
    Hi Radders,
    My son is due to go onto Embrel very soon we have a trip booked this Friday to Great Ormond St. Frankie has just had two courses of Methyl Pred at the QE2 in Welwyn Garden City. I know you mentioned Harlow hospital, this is the hospital Frankie was under but because we needed community nurses and physio etc we have had to move across. This disease is awful, we have been fighting it for nearly two years now and just wish it would go away!!! My heart goes out to all the parents and kids on this website as I know how everyone feels we all seem to be in the same 'boat'!!! Love to you all x
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi DD and Frankiesmum, good to hear from you.

    We've been toing and froing to Harlow for over 4 years now - I bet we've passed on the corridor...

    The Embrel has been good for Bet so far, has got the arthritis under control, but it did take the three months before we could really see a difference.

    The standard of care from them and at GOSH, is on the whole, and at the moment, exceptional; we meet so many lovely professionals, which is the one and only upside to this dreadful condition/disease.

    On a different note... Got a phone call from school yesterday, to bring Bet's painkiller in - today I couldn't keep up with her racing down the hill.

    Had the nativity play today, Bet was one of the narrators - she spoke her line beautifully (I would say that) - I'm a proud mummy x:))

    More ups than downs at the moment.

    Kath xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The ups exist - it's just spotting them that takes the talent! I am glad she didn't fluff her line. DD

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