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illihor
illihor Member Posts: 283
edited 22. Jul 2010, 04:35 in My child has arthritis
For her steroid injections. At least I think that's what it's for all the letter says is arrive at Bristol childrens hospital by 12 on sat 31st July which seems a very odd day to do this hmmm. It says no food/drink etc before surgery but doesn't actually state what it's for but I'm presuming it's for the steroid injections. I so hope her consultant is there as local hospital seem to have forgotten her and not heard anything about when she will next be seen.

Her fingers have stared swelling badly again and her left knee is growing large again I hope this doesn't mean the mtx isn't working as well or another flare up but never seen a flare up happen like this so dreading our hold when she misses a week of mtx.

On another note she's looking forward to school in September and the school has asked for a meeting at beginning of term with the outreach nurse from the local special needs school to come and chat and look how things need helping also had to sign a form for school where it said SEN need physicallyand speech &language so I'm guessing that will be another form at some point in time.

Just dreading this next GA as the effects from last one were terrible and she took a bit to wake up I'm a nervous wreck but holding on for her but it's not easy

Michelle xxx

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  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
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    illihor wrote:
    For her steroid injections. At least I think that's what it's for all the letter says is arrive at Bristol childrens hospital by 12 on sat 31st July which seems a very odd day to do this hmmm. It says no food/drink etc before surgery but doesn't actually state what it's for but I'm presuming it's for the steroid injections. I so hope her consultant is there as local hospital seem to have forgotten her and not heard anything about when she will next be seen.

    Her fingers have stared swelling badly again and her left knee is growing large again I hope this doesn't mean the mtx isn't working as well or another flare up but never seen a flare up happen like this so dreading our hold when she misses a week of mtx.

    On another note she's looking forward to school in September and the school has asked for a meeting at beginning of term with the outreach nurse from the local special needs school to come and chat and look how things need helping also had to sign a form for school where it said SEN need physicallyand speech &language so I'm guessing that will be another form at some point in time.

    Just dreading this next GA as the effects from last one were terrible and she took a bit to wake up I'm a nervous wreck but holding on for her but it's not easy

    Michelle xxx

    Hi Michelle - sounds like you are on a roller coaster - they are such a worry, our little ones. Hope things go well but I am thinking it might be worth ringing Bristol and checking what your daughter is going in for and wether the consultant will be there. You could also ring that local hospital and find out why you have not heard anything from them or tell your consultant in Bristol about the local hospital not being in touch. The more you know and can find out the more it well help you both at such a hard and horrid time. Just re-read this and I sound bossy - sorry but I just want to help some way. Lucy
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
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    Thanks. I've called up local hossie and waiting to year back from someone as the lady today was covering and didn't have a clue but said she would speak to our consultant.

    Tonight Kayleigh said her feet and ankles are hurting and when I looked at them her ankles just don't look right :( her right one has gone way to thin and the I side bone has gone hmm how to put it, pointy I guess would be the only way. They are looking more and more lie my dads as the days go on but his has taken years to form her seems to be months just seems to fast to me. Her thumbs are looking huge as well just need to speak with someone who knows her and has seen her and hopefully Kayleigh will start letting them look at her as she tends to hide and won't show a thing :(

    Michelle
  • saraht
    saraht Member Posts: 17
    edited 30. Nov -1, 00:00
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    hi michelle, no-one knows your daughter better than you, if she does not look right to you and no-one has been in touch my advice is to take her to a&e or if your hospital has one a childrens assesment unit it may sound drastic or you may feel as though you dont want to come a cross as being an over protective mother but it is vital to get help asap, i felt like that at the start with my daughter but learnt the hard way that the sooner you see someone the better it will be for your daughter, if you read my post 'no more treatment' you'll understand why i feel the way i do. i wish you all the best and hope all goes well on the 31st, (p.s i understand that a saturday is a funny day for surgery i have a son going in on the 31st for a circumsicision and did query that it was a saturday, just got told hosp now do surgery at weekends).
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