Update from here - with a ?

illihor Member Posts: 283
edited 11. Jul 2010, 16:01 in My child has arthritis
Well I can finally see a big difference in Kayleigh at the moement. She is more happier and willing to try things and even back to being cheeky and not listening (like most 4 year olds) as she has been very withdrawn and quiet. Even nursery have said that she's come out of her shell a bit and they are hearing her talk and play a bit more, she still won't interact with other children but we'll take that one step at a time.

She starts school in September and have met her teacher who is keen to have a meeting with us to find out more about her and what her needs will/might be. I'm so glad the school is finally being supportive in this although still got to hear back from the SENCO person so will have to chase that up :(

On another entirely different note, my poor girl has always suffered with ear infections that 90% of the time rupture her ear drum her first one was at 5 weeks old :shock: Anyway she seemed to be having them less and less got referred to ENT as her hearing was down but the top dog on the day of her grommets op came in and disagreed with the assessment and sent us home grrrr. I never bothered going back and arguing it out with them and her last hearing test came back just within the limits so they discharged her. Now in the space of a month she's had two infections this latest one affecting both ears and there was so much puss and fluid it's been unreal. They put her on amoxicillan this time even thought I was told she shouldn't be having it while on MTX (no consistency with drs). We have to go back on Monday to get her checked out and make sure it's healing this time, my worry is that obviously her body is'nt all it's cracked up to be plus she's on MTX do I ask for a referal back to ENT to see what's causing all these infections or just leave it be and hope for the best. She's hardly been able to hear this past week and we've really had to yell at her (makes people stare in the street) she's gone through and will be going through so much I don't want to cause her any more grief but I can't let this keep going on. So confused and unsure what to do ?????

thanks for listeneing (well reading) to me ramble on

Michelle xxx


  • roses1
    roses1 Member Posts: 1,850
    edited 30. Nov -1, 00:00
    Hi michelle,

    Glad to hear your little one was doing much better, In the case of the mtx and antibiotics i too am sure you not supposed to have them together. My mom takes it and when she was ill with shingles she had to stop the mtx so i would give Dr or Rheumy a ring to be sure whether its ok or not and not wait till monday.

    Hope it all works out and your not rambling you are a concerned mum.

    Rose x
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Michelle, that is great news that Kayleigh is feeling so much happier and her usual cheerful self. (I bet you are secretly loving seeing her cheeky side again!)

    I would ask the GP to get a hearing test organised asap. Problems with hearing can affect self confidence and have a big impact on learning at "big" school. If the audiologist thinks she has hearing problems they will refer her back to ENT. If you are still on the ENT department books - they ask for a check up too. Give them a race!! Does Kayleigh have a paed who can liase with ENT and advocate on her behalf re her lowered immunity etc???

    Keep fighting Michelle, you are doing a great job. Kayleigh is very lucky that you are fighting her corner. (EXhausting though it must be.)

    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    glad she is feeling better hun x x xi hope she continues to be a happy playful girl x x