Finally seeing rheumatology questions for initial visit?

illihor
illihor Member Posts: 283
edited 23. Nov 2009, 17:43 in My child has arthritis
Since she was diagnosed in August we've been left in limbo. Now finally we have a date through to see them, not until 1st December unfortunately. She's been living since August on ibuprofen 3 times a day and paracetamol 4 times a day and most days it just doesn't cut it for the pain :(

Now that we have this appointment I'm so nervous and haven't a clue what to say. Since my original post her symptons have gotten works she has a temp daily this is a child who is 36.5-37c tops and even with colds never runs a temp in fact even ear infections which her first one was at 5 weeks old she has NEVER ran a temp. Now she wakes up daily and it's anywhere between 37.5-38.2c and during the day with the above medication it keeps it at bay but sometimes she gets a 38c even with the meds. This has scared me I did think she was getting temps couple of months ago then once i took notice she got a cold and seemed forever to shift then I kinda forgot to take note again but last two weeks i've written it down every day and there's a def pattern on her bad days she runs a temp :( She has also complained of her hips, pelvis at the front and base of her spine, so on top of toes, feet, ankles, knees, fingers, knuckles, wrists and elbows things don't look too good for her :( She turns 4 on 27th november.

What will they do at this initial assessment? is there anyway to prepare her as I'm sure there will be a blood test *gulp* btu how's best to prep a child for a dr's visit when she's terrified of them. A problem made 10x worse when a year 1 student pushed her over in school 3 weeks ago and she split her head open so a trip to a&e had to be glued back together and milkd concussion now everytime you mention dr she says i'm better now yet 5 mins later crying as she's hurting :(

Are there any questions I should be asking or should I bring a copy of the diary i've just done of her temps or keep doing it so by that point in time they'll have a months worth of temps? i'm so unsure where to go at this point. When I initially went to the doctor I had 3 pages of A5 of everything I had noticed should I do the same with rheumatology? i don't want to come accross as pushy on the first visit but I want help for her is it wise for me to suggest or ask for physio and hydrotherapy? I'm so scared at what they are going to say, I know something is wrong have done for more months than i care to think about but it's all getting so real now i'm scared.

Comments

  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    I'm glad to hear you've got an appt with a rheumatologist. I've never seen a paediatric RD as I was diagnosed at 19, but I can't imagine there is that much of a difference.

    They will probably want to take bloods and take some x-rays. The RD will examine her, prod and poke all the joints that hurt. This process will probably be painful for your daughter.

    Take with you a list of all the symptoms you've observed. The diary you've been doing is a great tool for appointments. Write a list of all the medication you've been using with her, including any vitamins.

    Important questions to ask include: what might it be?; how do we treat it?; how long will treatment take?; what can we do in the mean time?; what should we be doing regarding exercise, socialising etc?

    Ask any questions you have regarding potential medication. Don't be afraid to ask for leaflets and other information. Good luck - I hope they can get to the bottom of your daughter's pain.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi there

    It is good that you have an appointment with the rheumi for your daughter and I can well understand that you are nervous and apprehensive. I think it would be a good idea to take along anything that you have written down regarding your child's ailments etc.

    I don't think you will come across as pushy at all. Sometimes we do have to be, so please do not back down if you feel you are not getting the help you require. These appointments are few and far inbetween and it is important to get as much information as possible. Are you able to take anyone with you as two heads are better than one at remembering details. You know your child better than anyone and this rheumi has the medical knowledge and expertise so working well together you will be able to make your child's life as easy and painfree as possible.

    Perhaps not mentioning the word doctor would be best under the circumstances, easier said than done, I know. It only takes one bad situation for these little ones to remember which is understandable, isn't it? Perhaps a reward of some kind after the visit would be a good idea.

    I do hope you get some answers and feel that you are getting somewhere after this appointment.

    Luv
    Elna x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    thank you for your replies. I've had the letter finally through this morning and it says bring a pair of shorts oh great lol how can i find that this time of year she's outgrown all summer stuff but also hated wearing shorts. Might do a skirt instead although i'm sure i saw at tescos a pack of pj's with shorts in will try there.

    I've also printed off Tim has Arthritis I found on this website aimed at 4-8 year olds. She keeps going back to the x-ray page and saying no and getting really pale bless her. My dad has arthritis so told her he has had this done so think a trip out to his place with the book is in order as she wants to ask him.

    I'm really glad i've found the book as it's something just for her that she can understand although she doesn't want leg splints as it's something brought up in the book but I can't say for sure what will happen.

    She had a terrible night last night and spent most of it in bed with me as she kept waking up the baby (13 months and they share a room) the boys (I have 4 children 5 and 6 year old boys and 2 girls) didn't hear her thankfully but with being up till gone 2 with Kayleigh then the baby woke at 6.30 for a feed then boys woke at 7 i'm so tired today.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Illi

    I am sure you must be exhausted with such a large family including a 13 monther. My heart goes out to you. It must be terrible not getting your sleep. Mum's get used to that though, don't they?

    The book sounds like a good idea.

    I don't see why a little skirt would not be ok if you are unable to get shorts which would be difficult as you say to buy, this time of year. If she feels happier in a skirt I would go down that route I think.

    I do hope that the visit is not too traumatic for you and your daughter and hope very much that you get some answers to your questions and some reassurance.

    Luv
    Elna x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Thank you Elna, I think skirt option will be best as then she can wear it in and only have to take off tights although she would have been at nursery all day so will be in uniform anyway and she prefers to wear skirts/dresses especially as she has some new bigger comfier red tights lol

    I know she's going to be exhausted just from that and if the weather is like it is now she's going to be in a lot of pain :( all she's done past few days is cry it's so heartbreaking as there's nothing I can do.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Illi

    I hope today has been better for you and your little one. I am sure she must look so cute in her red tights. Let's hope next week is a calmer one for her and then automatically it will be for you too. All you can do at the moment is to be there for her, as I know you are, as much as is possible, as you have your other children to attend to and cherish as well.

    Luv
    Elna x(())
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Thank you,

    She had a tough weekend but today hasn't been to bad till the end when she's complaining about her pelvis again. Well I'presume it's there can't think of anything else it could be. Her ankles seem really bad lately and it's hard to get her to do stairs anymore :( thank goodness this new school (had an amalgamation of two local schools to make a new one) as there aren't any stairs here the old one was riddled with them.

    I received the DLA pack today :( omg it looks horrible and some of the questions i was just sat crying reading them as was thinking yep that'll be her, this one also and this one gonna take me ages to do it, but Social services told me that I should apply for it but I hate to think of her in this way, I try and stay positive as much as I can but reading this is really putting a dampner on the whole thing. It doesn't have to be back till 16th december so think I'll hold off till we have at least had this appointment then again gonna take me this long to fill it in.

    She's always had swimming lessons since 4 months old in fact and the pool have kindly written a supporting letter I can send with it. It's touched me that they have done this but sad to see how what they've said as I've not told them what to say. I've asked nusery if they could write a letter too as social said the more people we can get the better.

    I just wish I had a magic wand to make her all better and do away with all these forms and have my happy bouncing child back again. It was bad enough seeing my dad become worse with it let alone my own child :(

    Still she had fun on Saturday even though think she paid for it on Sunday. I took her (well all 4 kids by myself) to see Santa arrive by sled pulled by 2 reindeer at our local garden centre. They had so much fun I was exhausted though.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Michelle

    I do hope that the last week has been better for your daughter and you all.

    It is not that long to wait now until the appointment.

    Love
    Elna x
  • elviswife
    elviswife Member Posts: 12
    edited 30. Nov -1, 00:00
    illihor wrote:
    Thank you,

    She had a tough weekend but today hasn't been to bad till the end when she's complaining about her pelvis again. Well I'presume it's there can't think of anything else it could be. Her ankles seem really bad lately and it's hard to get her to do stairs anymore :( thank goodness this new school (had an amalgamation of two local schools to make a new one) as there aren't any stairs here the old one was riddled with them.

    I received the DLA pack today :( omg it looks horrible and some of the questions i was just sat crying reading them as was thinking yep that'll be her, this one also and this one gonna take me ages to do it, but Social services told me that I should apply for it but I hate to think of her in this way, I try and stay positive as much as I can but reading this is really putting a dampner on the whole thing. It doesn't have to be back till 16th december so think I'll hold off till we have at least had this appointment then again gonna take me this long to fill it in.

    She's always had swimming lessons since 4 months old in fact and the pool have kindly written a supporting letter I can send with it. It's touched me that they have done this but sad to see how what they've said as I've not told them what to say. I've asked nusery if they could write a letter too as social said the more people we can get the better.

    I just wish I had a magic wand to make her all better and do away with all these forms and have my happy bouncing child back again. It was bad enough seeing my dad become worse with it let alone my own child :(

    Still she had fun on Saturday even though think she paid for it on Sunday. I took her (well all 4 kids by myself) to see Santa arrive by sled pulled by 2 reindeer at our local garden centre. They had so much fun I was exhausted though.


    hi,

    please dont feel like your on your own, i would love to send you a personal messege, but im new and having problems logging in.
    im sat here feeling your pain, with tears in my eyes :cry:
    i have 3 children 9, 3 and 8 months. my 3year old was diagnosed with poly arthritis, in feb this year. i had been trying to get the doctor to refer us for a year because something was wrong. she kept limping all the time, and crying when she was walking, even only short distances or wouldnt walk at all, and being pregnant too this made it much worse for her. she has fat feet, ankles, wrists, knees,toes, fingers etc.
    she lost her appetite, she went thin in her face and had huge dark circles under her eyes. she just used to sit/ lay on the settee looking at books or just watching tv. she never wanted to talk to anyone, never played with other children, including our own. trying to get her dressed was a nightmare, and putting tights on was impossible.

    she would get out of bed in the morning and scream in pain, people would say oh, its just the terrible twos or shes just playing up with you being pregnant or she just been lazy!! she couldnt walk up or down the stairs, get up or down off the floor, at three years thats not right.

    but as a mum you yourself know different.
    so yes i feel like i SO know what your struggling with.


    all you have to tell the doctor is whats happening at home, dont feel daft, i did and theres no reason to. i thought i was making something up head, but this was actually happening to my daughter.
    my daugher has arthritis all over. she is now thankfully recieving treatment, shes not fully ok yet, we just keeping trying different things to try to keep her pain free. its a bit of a roller coaster ride, but hang in there things will get better for you and your daughter.

    xx

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