Poor child as if she doesn't have enough to deal with

illihor Member Posts: 283
edited 18. Dec 2011, 14:26 in My child has arthritis
Ok not suer where to start so here goes and I will apologise now if it runs on forever lol

2 years ago when Kayleigh was first diagnosed with JIA she was due to have grommets but the surgeon at the time who also happened to be head of department decided her hearing wasn't bad enough and discharged her from ENT. It got cancelled on the actual day of her op she even had the magic cream on her hand.

Anyway I decided to get her re-referred as I wasn't happy with her hearing or her speech, she then started speech and language therapy. Finally got her seen and after a year of 3 monthly hearing tests and me being insitant (as her tests kept coming back as only just below the like where they are happy to op same as before) but I said I wanted grommets or at least hearing aids but because of her breathing issues and they wanted to do her adenoids they agreed to "look" at her ears.

Well op day was booked for november 1st, the day before we were up the hossie picking up her new shoes when we bumped into her consultant who asked if we had stopped Etanercept for her op so her op got cancelled again as no one had told us to stop the meds.

Second or technically 3rd date booked for end of November finally comes and not cancelled. Surgeon (a really nice lady) took my concerns seriously even about her jaw as it's been mega sore of late and she's just had an ultra sound but now needs MRI to look at it.

So after surgery the surgeon comes and sits next to me. Heart jumps to my mouth as we know they never sit after surgery to speak with you she says, Kayleigh is fine just waking her but we do have a problem. Her ears are in a terrible shape. They are so thin and scared she doubts the grommets will even stay in especially the right one. She said they will see her again in 6-8 weeks (already have the appointment throught for 13th jan) and see if the grommets are in if not then immediate urgent waiting list to repair her ear drum she said they go in from behind the ear and rebuild it eeek. They did a partial adenoidectomy and kept her in overnight. She said they didn't bother clamping her jaws open because when they opened her jaw it clicked.

Her hearing I would say is better than before but she keeps saying her right one isn't that good, then other times seems to hear fine.

Due to her stopping Etanercept she hasn't been too well and has had two doses so far since the op. We saw her consultant and the Bristol team on Wednesday where they said her knees are looking really large, her right wrist is well puffy and lots of fluid in there and her jaw still hurts. They are going to play the waiting game and hope it was just the missed meds causing it (fingers crossed) otherwise they will inject again :(

Then to top it all my youngest was running to me before going work last week tripped and has broken her big toe. You wouldn't think that now as she's running around again but def hasn't been a good month.

Sorry for the essay

Michelle xxx


  • worriedmum
    worriedmum Member Posts: 72
    edited 30. Nov -1, 00:00
    God Michelle,
    Dont know what to say. It's a good job you persisted in getting the ENT team to take your concerns seriously. Who know what would have happened to her hearing the llonger it was left. Is ishe in any pain with the ear drum issues?
    Hopefully, the Bristol team are right about her missed treatment and things will settle down with the oints again. If not, what's the plan?
    I'll be thinking of you and hoping K is feeling much better soon.
    Love to both
    Sam. xxx
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Thanks Sam,

    She can be in pain with her ears but if ever she has a proper ear ache within 24 hours lately within 12 hours of pain starting her ear drum ruptures (not that ENT seemed to take that into consideration at all). She's no longer in pain from the op and hasn't complained about her ears last two days which is a bonus.

    As for her joints flaring, I'm hoping it is due to the skipped meds although it does show how much she needs them :( If it doesn't settle down they are planning on steroid joint injections again so potentially another 2 possibly 3 GA's as she HATED the ultra sound and I seriously don't think she will lie still enough for MRI. Poor kid she had 3 GA's last year so far had 1 this year :(

    Michelle xxx