Feel like a rubbish Mum tonight!

worriedmum
worriedmum Member Posts: 72
edited 23. Oct 2010, 16:30 in My child has arthritis
Freya has been taking MTX since July. (10mg weekly dose - so 4 2.5mg tablets.) Freya is four and a half.
When she first started taking them, she was brilliant and took them with water and was really proud of herself, as were we and we made this clear. This lasted for a few weeks, since then she has had lots of treatment, appointments, etc and of course the blood tests.
The blood tests have become more traumatic. She used to just accept it and stick an arm out and not even cry. Now it is a real battle, even using Emla cream in advance. She had them done on Tuesday and was really distressed again, despite my having spoken to the nurse on the phone in advance, and in response, her giving Freya lots of time and emotional support.
More worrying is the tablet taking. She cried all the way home from school last Friday and begged to go to a friends house (she was avoiding going home cause she knew it was tablet day!). Lots of talking and giving her choice about when and how she wanted to take her tablets later and so today, she decided to take them before tea. We started at 17:20. She Cried and moaned and delayed in every way possible and evetually took the first one an hour and forty minutes later!! No, i'm not kidding! My husband and me sat with her the whole time, reasurring her and trying to be gentle and patient. She eventually took the second at twenty past eight! Yes, we had all sat there the entire time. By now she was so tired she was a mess. We had to give up and let her go to bed and she has promised to take the other two in the morning.
Apart from not being so tired I can't imagine it's gonna be much easier in the morning.We'll see.

Trust me, we have tried all the usual things - rewards charts, stickers, chocolate, choices, presents etc. She refuses to try to take it in yogurt or something else, and will only try with water/milk. She says she can feel them coming back up in her throat. Will be speaking to rheumy nurse again this week though I have already raised the issue and may requsest that we try liquid MTX. Anybody got any experience of it? I heard it tastes horrid.
We gave up tonight because although we didn't want to be in a position to say 'ok, don't bother taking them' and let her off cause this is the worst thing to do, but we both felt that what we were doing, for three hours was bordering on emotional abuse! We didn't want to traumatise her any more but really didn't know what to do for the best. We even rang the late night chemist for advice.
She went to bed happy bt I got the impresion she thinks she has won this round and I feel as though we were cruel making her sit through that, but then, as we explained to her, we are only doing it for the right reasons.
Any advice welcome. Don;t know what to do and feel completely rubbish as a mum having to put her through all this stuff. She's so little!
Sam. x

Comments

  • jordansmum
    jordansmum Member Posts: 257
    edited 30. Nov -1, 00:00
    oh sam i really feel for you jordan hates his meth day to but he is older so he understands more, if i were you i would contact the rhummy nurse on monday and speak to her. You are not a rubbish mum your post shows that you are a caring loving mum my hugs go out to you both.
  • suzster
    suzster Member Posts: 1,328
    edited 30. Nov -1, 00:00
    sam, i am not in your situation but i can kind of understand the tablet trouble, i was the same and i was a grown up, so being so much younger it must be hard for her and for you as her parents.
    i cannot really advice as i went on to injections when i couldn't take the tablets but in the end that became impossible.
    so sorry i cannot help but i wanted to offer support and i hope that her rheumy can help.
    sue
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Oh hun hugs. Your far from a rubbish mum. I know what yo mean about it all being a battle of late. Kayleigh has MTX but injections and she HATES it. she's getting worse and worse but she has enbrel via injection on the same day too. She also hates bloods being taken and now we've been given the cream to put on at home dreading this.

    I would have done the same in your situation. Thankfully tablets and liquid meds is the one thing Kayleigh takes really well. I've never experienced tablet MTX but do they disolve at all so make it a juice or something? Kayleigh has movicol like this and i make it very strong so she doesn't taste it at all. good luck and i think a call to the nurse is def needed hugs

    Michelle xxx
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    You are not a rubbish Mum. It's hard. You are doing all the right things. You did exactly what I would have done. Just hold the line.

    Did she take the others in the morning?

    Maybe it's time to think of moving to the injection? We hate injection time but we hate medicine time even more!

    Best of Luck,
    Andy
  • clairy
    clairy Member Posts: 29
    edited 30. Nov -1, 00:00
    Big hugs to you both. Does she feel sick after the MTX? I know when i first started mtx it used to make me feel quite sick and this might be the reason she is refusing. I guess its hard with her age. Give the rheumy nurse a ring i'm sure they will have lots of ideas.
  • jordansmum
    jordansmum Member Posts: 257
    edited 30. Nov -1, 00:00
    glad freya is feeling better today xx jenny
  • worriedmum
    worriedmum Member Posts: 72
    edited 30. Nov -1, 00:00
    Did she take the others in the morning?

    Yes she did. She still used lots of delaying tactics and cried a bit, but we just got a bit tough with her and said we wouldn't accept what we had the night before, so to just get on with it. My husband counted to 10 for each one, and said he wanted them gone by the time he reached ten. This seemed to work and although she was still upset she took them both within 15 minutes.

    Will speak to nurse in the morning and see what can be done cause something has to change.
    Thanks for your reply and support.
    Sam.
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Hi i know how you feel phoebe had the same problem she used to be on medicine which she loved but when she put weight on the consistancy and flavour changed so she refued it, then we tried the tablets which don't taste very nice, so we ended up on mtx injection once a week which stopped in may because of dentist pulling 2 teeth out. It gets frustrating for botht he child and the parent, we tried to explain to her that she had to have the medication. Depending what happens on thursday she may end up back on medication but if that is the case i will give her the option of what she wants to take.

    Just keep your chin up and plod along slowly. Have thye suggested that she sees a psycologist? Phoebe saw one and for a while she was fine.
    Michelle A
  • worriedmum
    worriedmum Member Posts: 72
    edited 30. Nov -1, 00:00
    Thanks Michelle,
    I have organised for a prescription of the liquid MTX which we will pick up later today and try on Saturday morning. Freya is happy with this - though what she will think when she tastes it is altogther a differnent prospect!
    We'll see how it goes.
    I wondered about Psych/play therepist involvement cause she has got funny about her blood tests too so I will perhaps discuss this when we are next in clinic. Interested to hear it had a positivie outcome for your daughter.
    Thanks for your advice
    Sam.x
  • saraht
    saraht Member Posts: 17
    edited 30. Nov -1, 00:00
    dont know if it will work for you but lucy used to get like this when she was about freyas age so we ditched the numbing cream i found that the 45mins that it takes for the cream to work just got lucy worked up, its on so she knew what was coming and by the time it was done she be hysterical, although she didnt like it and still got very upset without the cream it wasnt a constante reminder of what was happening, lucy hasnt used cream since she was 6. hope this helps.
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Apparently there is also a spray which they put on before the blood test which numbs the area pretty quickly. My friends son had some used for a blood test. With the meddicine just have a drink on hand for after just to take the taste away. Michelle