Daughter having another flare up

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baby
baby Member Posts: 22
edited 10. Oct 2011, 11:12 in My child has arthritis
Eithne is having another flare up and we are going for more injections on Monday. It's in a new joint so that makes 4 in total now - it's also in her right foot which is a new place for it. :sad:

She is beyond terrified of needles now because of the bad experiences we have had in the past with the numbing cream not working so the anaesthetic needle has hurt her a lot.

The specialist nurse is referring us to a play therapist - but we aren't going to see them before we go on Monday. She will be having gas and not the needle, so we're hoping that will work, but she's constantly begging us to hide her ankle from Dr Ian so he can't put a needle in. It's very sad and hard to deal with as we know she needs the injections to make things better.

We have our next consultant appointment in November so I guess we'll know more then.

Arianna
The specialist nurse has also written all over her notes that she really needs to be put on permanent meds (thus far she's been fine with just having injections when she has a flare up but this will be the 4th set since her diagnosis in April 2010). I'm quite frightened of that as I don't know how we'll get her to have the meds if it's injections or have her bloods done - she screamed the surgery down when she had her booster injections the other week!

I'm also worried about any possible side effects. She's at nursery still (her final year before she starts big school). We can't afford to have her off nursery a lot if she has a problem with the meds as I work for myself and if I can't work, I can't bill my customers, I can't be paid, then we can't pay our bills. Don't get me wrong - I will do anything for my baby girl - but it's just one continual spiral really. Doesn't help that I'm having some health problems as well that are affecting daily life.

I hope this all stops soon. I'm very worried about her going off to big school. We're going to try to get a meeting with the head teacher for where we are hoping she will go to discuss things with them and get some reassurance that they will get in touch if they notice anything.

Comments

  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    As a mother and grandmother my heart goes out to you. Poor little Eithne! It must be so distressing for you all.

    I really understand your concerns but I would urge you to try not to get ahead of yourself. If the injections are no longer working well then Eithne will need some permanent meds. It must be so hard to get your head round this as a Mum but this disease does need to be under control and the sooner the better for your little one's sake.

    I'm not sure what the situation is for children - I hope other Mums will soon be here to tell you - but, for adults, they normally go for pills first and injections only if there is a problem with the pills. Blood tests do tend to figure but they can use 'butterfy clip' needles which are thinner and easier and hurt less so your little girl may find they are not as bad as she thought.

    As for the school/nursery/your work etc, again other Mum's may be able to tell you how they deal with this difficult juggling act. I'd just say that you have virtually 12 months before that becomes a factor and 12 months is a long time with children. It might be that, by then, Eithne is stabilised on somethig that works well for her. I do hope so.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • worriedmum
    worriedmum Member Posts: 72
    edited 30. Nov -1, 00:00
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    Hi there, I'm Sam and my daighter Freya, now five has had JIA and associated Uveitis since age 2.
    I'm sorry your little one is strggling at the mo. Just a couple of points I wanted to pick up on.
    Freya started MTX tablets, but became reluctant to taking them as they made her feel sick and she got distressed so we asked for a liquid . They were reluctant, but we switched and hasn't been a problem at all. She just takes it carefully in a ssyringe every saturday morning with no real issues. If there are problems with tolerance and side efefcts such as mouth ulcers and tummy upset they would suggest sub cut MTX (injection under the skin) which tey can teach you or another family member to do each week if more convenient.
    Also, blood tests on MTX start at monthly, but once levels settle and if no blood probs, can go to 6 weeks, maybe even 2 motnhs. Check out Buzzy4shots.co.uk to see the deide I just ordered for the very purpose. Also, Freya is about to start Humira soon so will be abig help hopefully.
    Hope this helps alay some of your fears. I wish you well. Do get in touch any time if I can offr any more support I check in regularly.
    Take care
    Sam. x
  • baby
    baby Member Posts: 22
    edited 30. Nov -1, 00:00
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    worriedmum wrote:
    Hi there, I'm Sam and my daighter Freya, now five has had JIA and associated Uveitis since age 2.
    I'm sorry your little one is strggling at the mo. Just a couple of points I wanted to pick up on.
    Freya started MTX tablets, but became reluctant to taking them as they made her feel sick and she got distressed so we asked for a liquid . They were reluctant, but we switched and hasn't been a problem at all. She just takes it carefully in a ssyringe every saturday morning with no real issues. If there are problems with tolerance and side efefcts such as mouth ulcers and tummy upset they would suggest sub cut MTX (injection under the skin) which tey can teach you or another family member to do each week if more convenient.
    Also, blood tests on MTX start at monthly, but once levels settle and if no blood probs, can go to 6 weeks, maybe even 2 motnhs. Check out Buzzy4shots.co.uk to see the deide I just ordered for the very purpose. Also, Freya is about to start Humira soon so will be abig help hopefully.
    Hope this helps alay some of your fears. I wish you well. Do get in touch any time if I can offr any more support I check in regularly.
    Take care
    Sam. x

    Hi Sam - sorry for taking so long to reply. Last week was totally crazy with Eithne having her injections and then at home with me. Only finally got caught up on missed work today!

    I spoke briefly with the play therapist on Monday (as she was there and expecting Eithne so spent time with us), and she said if they decide to do it by injection, the play therapist we will see is Entonox trained, so they can always give her entonox before the injection.

    She did so well with being put to sleep with the gas it was amazing. A much more relaxed time for us than the previous times.

    We see the consultant again in November so we will see what happens then.

    Arianna
  • baby
    baby Member Posts: 22
    edited 30. Nov -1, 00:00
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    stickywicket wrote:
    As a mother and grandmother my heart goes out to you. Poor little Eithne! It must be so distressing for you all.

    I really understand your concerns but I would urge you to try not to get ahead of yourself. If the injections are no longer working well then Eithne will need some permanent meds. It must be so hard to get your head round this as a Mum but this disease does need to be under control and the sooner the better for your little one's sake.

    I'm not sure what the situation is for children - I hope other Mums will soon be here to tell you - but, for adults, they normally go for pills first and injections only if there is a problem with the pills. Blood tests do tend to figure but they can use 'butterfy clip' needles which are thinner and easier and hurt less so your little girl may find they are not as bad as she thought.

    As for the school/nursery/your work etc, again other Mum's may be able to tell you how they deal with this difficult juggling act. I'd just say that you have virtually 12 months before that becomes a factor and 12 months is a long time with children. It might be that, by then, Eithne is stabilised on somethig that works well for her. I do hope so.

    Hello,

    Thank you for replying.

    It is very hard to get my head around my little girl hurting for a reason we can't really explain to her.

    We see the consultant in November so hopefully they will be able to give us some more information about things.

    The school we are hoping she goes to is very good with children who have disabilities and special needs so I hopefully won't have to worry too much.

    Arianna
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