arthritis and m.e.d

CherryDrops
CherryDrops Member Posts: 18
edited 21. Apr 2012, 17:11 in My child has arthritis
Hi, my 10yr old daughter has suffered with Multiple Epipyseal Dysplasia for almost 4yrs. Recently she suffered a very rough patch with chronic continual aches/pains and her consultant refered her to the rheumatolgist. After a 3 day spell in hospital for steriod infusion and various tests they confirmed that her m.e.d had progressed to full skeletal dysplasia and that she had arthritis throughout her body. I don't know where we go from here yet (she is currently home on a weaning dose of steriods). we go to see the physio and OT on monday and then hopefully back the next week to rheumo but they have asked that she have an MRI as well so waiting for them to co-ordinate apts. I came across this forum and am so relieved to have found somewhere to 'talk' with others going through similar things and emotions. It feels a very lonely world out there. I have an intelligent child and I cannot answer her questions. Thankyou for taking the time to reading our story. :?
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Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello CherryDrops, it's lovely to meet you but what a sad, sad story. Your poor girl - and poor you too. I don't have a child, I have never been a mum, but I was very ill as a child and, quite honestly, I'm not doing that well as an adult thanks to my arthritises. I do, however, empathise with both of you. I have no answers my lovely, I doubt any one has apart from take things day by day, sometimes that is all we can do. I wish you both well and please keep in touch: this is obviously a quieter forum than some of the others on here but there are a few of us who keep an eye open for you heroic mums (and dads) who are battling on behalf of their little ones. ((())) DD
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    Just wanted to say a very quick but a very BIG thankyou for replying to my post dreamdaisy. It is comforting to know that there are people out there who take the time to listen and respond. I will post an update on tues as we are going back on monday for physio/OT but as the hospital is 3 hours away I am too tired to do anything other than cuddle her when we get home!
    many thanks again. Cherry.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You are more than welcome CherryDrops, rest assured I will be thinking of you both on Monday: I reckon that is going to be a long and painful day for you both but please don't feel under pressure to update us, that can wait. Take care, I hope you are having a good week-end. DD
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Hi Cherry Drops,

    What a horrible time for you and your daughter. I had to look up MED as I'd never come across is before. It sounds a ghastly disease. The wikipedia article suggests that osteoarthritis develops early. Does your daughter have osteo or rheumatoid arthrits?

    I don't know much about osteo, I presume they treat it with different drugs as it's not an immune system problem. So suppressing the immune system will not help at all. Is it just pain killers and joint replacement?Sorry to be so useless with info - just full of questions.

    But at least this is a place to come and moan/discuss/ask/let-off-steam. Many of the posters, other than the superbly reliable DD, don't check in every day - I normally call in about once a fortnight. But eventually someone will appear.

    Good luck,
    Andy
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello CherryDrops, how are things? I have been thinking of you but currently I am not too bonny so won't hang about. I hope that yesterday was not too much of an ordeal/trial for you both, I really do. DD

    PS Thank you, andylamb, for those very kind words. I've sent you a PM, I hope you spot it! DD
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi guys
    A long day it was indeed! we left home at 9am after dropping youngest at school and returned at 9.30pm!
    Sorry your not feeling too great dreamdaisy, hope things imrpove as the day goes on. hi andylamb, nice to hear from you!
    The crux of the meeting was that they want her to go back in for 3days next week for a repeat of the drip steriods as she is not coping on the weaning dose they gave her. They are very concerned about the state of her hands/wrists and ankles at the mo. She is shortly due to have a plate removed from her leg (she had bi-lateral plates put in to straighten and strengthen her legs due to the m.e.d two were taken out last year and the other is almost ready). When they take that plate out they will pin her ankles to try and help there although that will be a long process. however things seem to go from bad to worse as whilst there she saw the opthologist and he diagnosed cloudy, mis-shapen corneas which put alongside all her other complaints is now leading them to believe very strongly that she has a disease called mucopolysaacharidosis 1V (murquio disease). This was a devastating shock that I still havent taken in, especially when i read up properly on the condition. She has had a blood test and we now have a horrid wait for the results. The worrying thing is though that they want to test my youngest as well but they are not waiting for my daughters results to come through first, they want him seen in the next couple of weeks. To me that says that they are very sure of the diagnosis. If there was any doubt surely they would wait and see if the test came back negative?
    Anyway, that is our situation at present! I am now going to try and sort out a statement for shool as she transfers to secondary in september :( and to try and work my way through the maize that is DLA! Speak soon.x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I can't take this all in (still recovering from a nasty, nasty bug and I cannot concentrate well). I need a bit of time to think but, in the mean time, have some very disinfected hugs from me. ((())) DD
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Oh dear, sorry to hear all that Cherry Drops. You must be in a dreadful state. Maybe they are checking your youngest now rather than waiting because the sooner they know the sooner they can do something?

    Virtual hugs to you. I think you need them.

    Andy
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks DD/Andy, all those virtual hugs much appreciated thankyou! I will be taking them with us tomorrow when we go back in. :cry: Poor little thing didnt want to go into school today, she is getting very worked up especially as she now has prior knowledge of what will be going on. Getting her to do her physio has been hard work for the last couple of days, she's been so stiff and achy. it's very hard to be tough and make her do it when she's clearly in pain even though we both know it's best in the long run.
    I hope in a way that they get the results of the Murquio bloods before we come home on friday too. I don't want to know but I do, if that makes sense?!
    the good news is though that the school have agreed to fund a posture pack for her which is a wonderful device that the OT found for us - its a folder which doubles as a writing slope board and stores within it a seat pad to correct posture, it also has a ring binder inside and pencil case etc so she only has one thing to carry around school which will be wonderful for next year when she moves to secondary.
    anyway, better go and get her things packed for tomorrow. wish us luck and I will fill you in when we get home.
    take care all
    kerry
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Good luck. I'll be thinking of you.

    A
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello CherryDrops, please acept my apologies for not replying sooner but immediately my bug cleared we came away for a week's break and today, thanks to inclement weather, I am able to log in with a clear conscience!

    I have absolutely no ideas or suggestions for you both, obviously it's the medicos who are best-placed to advise you. It seems so appallingly unfair that layer upon layer of troubles is being heaped upon your girl, and it's little wonder that she is less than keen on the essential physio etc. Continual pain is so draining on the psyche, it can be so hard sometimes to ignore it to get on with things - and I speak as a hoary old 53 year old. I hope the new kit helps matters and I would have thought that your case would be a shoo-in for DLA but in these un-enlightened times, well, who can say? Right, it's time to brave said inclement weather as we need loo roll! Take care, I am thinking of you both. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, how are things? I am thinking of you both. DD
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    hi DD, am slowly bringing my head out of the sand :cry: all tests came back clear on my youngest thank goodness but the reality and enormity of what we could be up against is slowly dawning. We still await the results for the murquio,the bloods went to manchester who have sent them to great ormond st for verification and great ormond st have requested all clinical notes so to me its not looking good.... I know I should be thinking positive and that they are making sure they are 100% sure that it is a negative result but I'm running low on optimism...

    We go back again on thurs to the orthopeadic clinic, hopefully they will give us a date for leg op to strengthen ankles. Will fill you in after. sorry not to be positive but diff when feeling so negative!

    Take care and glad you seem to have fully recovered from the lurgy!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It must be very tough for you as surely you have to be positive for the children despite your inner fretting. I sympathise. It's better that the medicos are thorough, yes? GOS is a wonderful hospital, there are some great people working there and I sincerely hope you get the news you would prefer.

    I am emerging from the flare from hell, I mis-judged my energy levels this morning and have been languishing on the sofa catching up with all my 'grotty' telly (as my husband calls it). You take care, keep your chin up and don't be afraid to come on here and tell us how you are feeling, we will do our best to help. (()) DD
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi All
    Still no results on the blood tests :? , had an osteo check up last week and the m.e.d has developed into full skeletal dysplasia which means all the bones in her body are degenerating, obviously this gives the inflammatory arthur more room to 'grow' and attack. I also noticed that the cartilidge on the tip of her nose seems to be disappearing...another one to add to the list to mention to the rheumo next week :roll: Three weeks since last steroids injections and the effects beginning to wear off again now, despite being on prednisolene at home. I wonder how long before they offer something else? She has little grip left in her hands/wrists now so school have reluctantly let her use a computer for literacy subjects. The OT gave her some special pens/pencils to use to aid comfort when writing but her class teacher doesn't like it because it makes her handwriting look scruffy! I told her I dont care about the state of her writing, its the permanent damage to her joints that worries me. sorry guys for ranting but I am so fed up and worried stiff about the Murquio results, the longer they take the worse I feel!
    Anyway, I hope you are all faring as well as can be expected. speak soon
  • stickywicket
    stickywicket Member Posts: 26,910
    edited 30. Nov -1, 00:00
    Of course you are fed up and worried stiff, Cherrydrops. I think any Mum would feel the same. It is so much easier to undergo stuff oneself than to watch those we love undergo them - especially when they are children.

    I would personally be inclined to tell your little lass's teacher to take a running jump. Has she no idea of the difficulties being faced here? No, I suppose not. How could she?

    I do wish I could help, Cherrydrops. All I can think to offer you are a few of these. ((())) Please remember we are here anytime you need to just let off steam.
  • Pegsboard
    Pegsboard Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi cherrydrops
    I've just read all your previous posts and I am here to send you good thoughts. It's the worst time waiting for results as you feel totally hopeless.
    Has your school got a special educational needs co-ordinator (SENco)?
    If they do they should be heavily involved with your girl and should be putting everything in to place to make her feel totally included at school.
    I'm a school governor with responsibilty for SEN and it sounds like your school need a good kick up the posterior!!
    Take care of yourself too stress is a horrid thing.

    Zoe x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello CherryDrops, how are things now? Has your girl broken up yet? I hope you are both as OK as you can be. DD
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi DD

    Officially we broke up on Friday, however Lil was off school for the last 3 days so I guess she broke up on Wednesday :cry: ! She has been quite poorly really, pains in tummy and chest (felt like she was being squashed from the inside), headaches and very hot joints all over. no temperature though :? . Thing is I no longer know what to treat as an illness/bug or a flare up, can arther make you feel generally unwell?? She spent 2 full days in bed which is not like her at all. My little boy was off for the last 2 days as well complaining of feeling sick but to be honest I think it was more that he was concerned for his big sister! They are very close and I am so tired that I indulged him for the first time ever and allowed him to stay at home with her, naughty I know but I'm normally a 'strict' mummy when it comes to time off and I think that given our circumstances at the mo we all need a bit of indulgence! She is much better now though, although she fell off her bike this morning and hurt her bad knee! We go to hosp again on wednesday for various clinics and hopefully they will have the blood test results at last :( . I am very worried about the state of her hands/wrists, I suspect that they may want to inject them soon.

    all that said, we are looking forward to just chilling for a couple of weeks, plenty of swimming and bike riding I think as we all enjoy that! Hope you are feeling well. Any exciting plans for Easter? We (well, I!!) tend to go a bit mad for any occasion that allows me to decorate the house so am now going into the garden to find a suitable branch for our Easter tree!! Then time to decorate the eggs! Take care and thankyou as always for the cyber support!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh yes, arthritis can make you feel generally unwell, the auto-immune types especially. I can remember with absolute clarity the last time I felt properly well (before I began all the meds) it was October 2001 after an operation to remove an ovarian cyst. Since then I have only felt a little like a proper human when I am off the injections due to a bug or whatever. It seems odd to feel better when you're ill with something else. :roll:

    Arthritis is tiring too - being in constant pain takes its toll and as I am going through a spectacularly rough patch at the moment I have cancelled Easter. I hope to spend it doing very little but I fear that won't be possible. I hope you and yours have a lovely time during the holidays and for what it's worth I think you were right to let your son have a couple of days at home: togetherness can be one of the best medicines. I wish you all well. DD
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    Oh Dream Daisy, I am truly sorry to hear that :( I really hope that your current rough patch soon passes and that you get the rest you need. I see your comments on lots of posts and you are always offering comfort and support to others, please accept mine in return.(((()))).
    take care
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    well, officially polyarticular inflammatory arthritis. 2 weeks time examination for injections into joints as not responding as much as hoped with steroids. Then we start the methotrexate. Still no news on the Murquio tests but Doc is expecting to have them when we go back on 17th to discuss the injections. went swimming yesterday, her first time for a long time - today she is suffering and doesnt want to do her physio!
  • Pegsboard
    Pegsboard Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi cherry drops
    How do you feel about starting methotrexate? We due to start this week but she's just had a 2nd round of steroids and her 1st chicken pox vaccine then in 3 weeks another c/pox vaccine then 4 weeks after that her MMR booster. It just all seems too much with the MTX too.
    Sorry I no you have your own worries just thought I'd ask your opinion.

    Zoe. X
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi Zoe

    We all have our own worries Zoe, that's why we're here I guess! a) to chat about our own worries, get advise and hopefully give something back in return and b) to not feel so bad that we're not on our own!

    With regard to mtx - to be honest it scares me to death. But if I dont let her have it I think it would be even scarier as heaven knows what damage has already been done (she has been suffering for 4yrs already leading up to this diagnosis), and if she doesnt get the med what further damage will be done?

    The second round of steriods given in hosp by drip worked better than the first (and she has them at home as well) but it hasnt been enough, hence the joint injections. To see her in pain and becoming more and more hateful of the affect of the steriods (both physically and emotionally) is horrid.

    I dont know how old your daughter is, Lil is almost 11 and due to start secondary school in september. She is fully involved in the decisions made and we had a long chat during which time she said she wanted the mtx injections as it had got to be better than how things are at the moment and that at least it would be working before she changed school. The hardest part though was when she said she chose injections over tablets as 'the injection gives 100% of the drug (the tablet only gives around 60-70%) and you will be giving it to me mummy at home and I trust you with my life so I know you wont give me anything that will hurt me' - how do you react to that one! (no undue pressure then!)

    Its hard isnt it? being responsible for making the decisions that will affect their future. At the mo it feels we're damned it we do damned if we dont!
    You must be finding it very tough at the moment - the extra time given to you by the c'pox/mmr vaccine is doubled edged to isnt it - it gives you time to think properly and weigh up all the pros and cons but also gives you too much time to fixate on the negatives :?

    All I can say is trust your instincts - mother nature gave them to us to help us in difficult times, each child is different and no-one knows their own precious like we do.
    Hope that I have made sense!! Take care and pls keep in touch and let me know how you get on.
    Kerry.x
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
    Only just come across this thread. Your poor little girl. What a lot to deal with. It does sound as if you are feeling a bit more positive now. I hope you are. I think you did the right thing allowing your son to have a couple of days off school. Spending time together is very important. I hope you get those results soon and your daughter gets all the help she needs. Can't believe what her teacher said. What does it matter what her writing looks like? Have a lovely Easter together and enjoy your choccie eggs. (((hugs)))

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