seeing rheumatologist this week after 9 months of GP visits

minnie2414
minnie2414 Member Posts: 3
edited 25. Nov 2013, 20:21 in My child has arthritis
hi

I'm not sure where to start. I hope you don't mind a long story but I will try to be as brief as poosible!! Basically my 16 yr old daughter started with back pain in March, she was prescribed numerous pain killers, most were inaffective and these were gradually increased until she was on tramadol 100mg 4 times a day but still experiencing pain in her back and legs. She could barely walk some days. She was tired a lot and was often burning up. The GP's refused at first to refer her to anyone or to a physio for 4 months despite repeated asking until they got her pain under control. She was then given blood tests, she'd already had an x-ray then an MRI. Nothing was conclusive. One GP suggested it was due to anxiety. She did have a brief respite for a week but things flared up as bad as previously. After a few sessions of physio he stopped her appointments due to her pain and no improvement, she then was given amitriptyline for the leg spasms! following another review by the GP she was told she was dependant on the tramadol and it was gradually reduced but she was crying with the constant pain so it was restarted while awaiting for this appointment.
She has suffered the indignity of not being able to move at school with everyone looking at her, she has even had to be helped off the toilet by her friends. Her social life is extremely restricted and she gets bouts of low mood as she was so active. She's more irritable than she used to be, not sure if that is frustration or teenage years! She is mostly cheerful and thoughtful of others, raising money for charity. She's my little treasure. She finds her condition embarrassing at times and was once taken to A & E from school by paramedics when unable to move at school although she did try to argue with them it happened a lot and she just needed time, bless her!
Last month she had an awful cough, fever, and this was causing her back more pain so off to the GP we went. The GP diagnosed bronchitis and gave her antibiotics. A couple of days later she had a lovely red rash, after seeing another GP he diagnosed glandular fever. Antihistamines did not help much and she spent a week in an awful state, the rash eventually abated but came back over a period of 2 weeks before finally going.
She is currently taking lodine which stopped her pain for a couple of weeks but it has come back with a vengeance again
I wish I could describe how I feel, worried, frustrated, guilty, angry but most of all saddened by watching her in so much pain. As a mother you want to protect your children and so far I feel I am failing in that I have been unable to get her diagnosed and treated.
We've counted up visits to the GP and physio, A & E, out of hours surgery and it is just over 50!!
I'm hoping for a few answers on Friday! I asked for and got a patient summary from the surgery to take with us as a memory prompt. It's been a long journey so far!

Comments

  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Just wanted to wish you well for your appt. Your daughter has been amazing so far and you have helped her through. Lets hope you get some answers and more importantly some treatment.
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hello Minnie2414 and welcome to the forum. I'm not the parent of a child with arthritis but I was diagnosed myself aged 15 (I remember being helped to school by friends) and have children and grandchildren of my own so I can empathise with both you and your daughter. Clearly you've both had a really tough time of it and I'm very glad you will finally be seeing a rheumatologist who, I hope, will be able to get to the root of the problem and begin treating it. If your daughter has any swelling or rashes between now and then do take photos to show the rheumatologist.

    Of course you will feel 'worried, frustrated, guilty, angry but most of all saddened by watching her in so much pain.' All of these are perfectly natural. We all want the best for our children. Ditch the guilt though. You've done all you could and possibly been failed by the medics involved. Guilt is a useless, debilitating emotion and you need your strength to support your daughter for Friday and for whatever the future might bring. Please let us know how you get on. I shall be thinking of you.
  • minnie2414
    minnie2414 Member Posts: 3
    edited 30. Nov -1, 00:00
    thanks for the replies. I hope that Friday brings us some answers and a way forward no matter the diagnosis.
    I have photos of her rash I took on my phone to show the doctor. She's not very good today so we'll welcome any answers and treatment so she can get on with living her life!
    I'm pleased I found this site as reading some of the threads make you feel less alone but also thankful.
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi minnie2414,

    I just wanted to wish you well for Friday, and offer you a Mum to Mum hug, my daughter is now 20 and is on the most amazing wellness time, after having been diagnosed with JIA at 13/14, and being and being on medication up until this year.

    Your poor girl, what a time to become ill, she sounds a lovely young lady, her positivity will see her through. And you are doing all the right things, your support will teach her to do the right things for herself. I hope you soon have a diagnosis (maybe a nasty virus), then you can begin as a family to deal with it.

    Kind, kind regards and positive wellness wishes for your daughter. :D

    P.s. I follow Arthritis Care and Arthritis Research on face book and find the news reels a positive way to keep up to date with things. (Both also do excellent help booklets)

    I have found the people on this forum, lovely and supportive and very good when I needed questions answering.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Minnie2414;

    You and your daughter sound like you have been very brave. That sounds terrible what she has been through (and you too). I wish you both all the best and hope she gets a diagnosis soon and a start on proper treatment.

    ((()))Anna

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