hi

lucymum
lucymum Member Posts: 113
edited 31. Dec 2009, 06:32 in My Child Has Arthritis
hi my name is susan, my little girl lucy has just been dyignosed she is 7!! I would love any information from other parents, or indeed young people who have lived through what we are!!!
We are just at the start of our hard journey after fighting for years for her to be recognised as having a problem! This is step one, could anyone fill me in on the next steps lol!!!

I hope you all are well x x

merry christmas to all x x x x

Comments

  • steph120786
    steph120786 Member Posts: 66
    edited 30. Nov -1, 00:00
    Hi

    Sorry to hear about your daughter, but glad things are finally moving for you....

    My daughter was diagnosed @ 18 month and is now 3... I will admit it is a rollercoaser but once you are under a consultant and nurse speciallist it becomes easier, I call my nurse speciallist with absolutly everything, they are there so use them..

    Ask away with questions, there are a few mums on here that I am sure will be here for you also.

    Hope you have a merry christmas ..

    Love
    Steph
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Hi we're at the start of the journey to. My gp told me what she had months ago but we only saw consultant for first time on 1st December and since then it's all a blur.

    My daughter is 4 but it all started 9 months ago she's since been seen a couple of times also been sent to another hossie. Last week she had steroids by iv over 3 days and now waiting for nurse to call re her injections that should start this week.

    I've found everyone to be so nice on here and it's great to be able to talk and have others listen and know how you feel, especially when you say you can't hug them as they are in to much pain.
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    taks to you both, am glad your kids are getting sorted. Lucy my 7 year old has had problems since she was 2-3 and i have had her to and from doctors every 6 to 9 months asking for help!!! It is only now that I have the support of the school behind me that she has finally been taken as having a problem. Inthe last threemonths we have gone from my docs saying there is nothing wrong to it being growing pains, thn when school health got involved we ere seen by a useless adult doctor who did the wrong blood test but, luckly he case was passed onto a lovely pedeatric rumitologist and now the wheels are turning!!!!
    I know as a kid how hard it is to have a mobility problem as have a disability and have since I was11, but to be a parent is completly different!!!
    I will gratefully take any advice anyone can give and hope tht my experiences growing up with a disability, helps others!!
    Our kid are so strong and they need the best, I hope they all get it!!! x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Hi lucys mum

    It's horrible seeing them in so much pain, I don't know how your daughter is with it but mine takes after me and is very stubborn/determined. Her dr says it's a good thing especially as we don't know when it truly started due to me having pnd after the birth of my last and final child who is now 14 months. O have 4 children and it can be so hard at times but I find having so many means she's never alone and tries hard to join in.

    We're up derriford this morning for our first physio session and possibly she'll get her I jection today to depends if the nurse can get away from clinic then after that a paed community nurse will come out to do it. Dreading it tbh I know what she's like. I have been offered to be taught to do it myself but I'm not ready for that yet perhaps when she's older.

    It has felt like a long battle but nothing like yours. I first went to gp in June who said it was nothing and she would grow out of it and bent her toes so far back it was unreal grrr she refused to go dr's again.

    How is she coping with school? I found it so hard trying to explain it to them as they just saw her as a quiet shy girl who never did anything until one day the pain got that bad she just cried they called me up that was so hard getting that first of many phone calls.

    Have they started any treatment on your little girl yet?
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    oh bless your little one, the doc moved all lucy's joints and decided that she would grow out of it and i was told it for years!!!!!!!!!

    Lucy is very....oh how to put it politly.............stubbon!!!!! She refuses to let it get on top of her. We went to a Waccy wearhouse yesteday for her birthda an every now and ten she cam over, "i don't feel well" she woul sit for 5 mins then get up "wellam going back cause why sould i miss out"
    She does get an attitude t times, especially when havin a very bad day, but she is a trooper.

    Lucy has startedthe correctdse of iburifen, and we are due to go back nextmonth to discuss the nxt step of treatment, physio and eye tests.

    What type does your little one have? Lucy has polyarthritus.
    Oh and as for PND bee there done that, I fully understand how you feel, I had it after Lucy and then again after my 3 year old. As much as it was a weight off my mind to have a name for Lucy's problems I know that emotionally for me itwill b hard as I am prone to droppinginto a depressive state, support is required ad I know that with friends family nd suppor groups we will allget it.
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    please excuse missing letters and bad spellings, my keybord has sticky keys, and i am a very bad speller lol
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Hugs for you. Kayleigh has polyarticular too although they are testing for psoriatic as it's in the family and they strongly suspect it's that to.

    She has it in well over 30 joints feet, ankles, knees, hips, fingers, thumbs, wrists, elbows, shoulder and jaw. It's hard when people look at her (she's a very tall 4 year old) and say why isn't she walking, she should be doing this and that etc.

    Kayleigh is also very stubborn physio said today that's a good thing she starts hydro next week. She's on ibuprofen, paracetamol and omeprazole(for stomach pains) she's just had a 3 day course of iv steroids and is due to start on methatrexate once I'm guessing community nurse gets in touch. Due to all this she has to have swine flu jab now rather than waiting to be called and the nurse up hossie today said the whole family should be having it now will have to battle gp's on this one.

    I'm on facebook if you want to chat more let ne know via pm and I'll give you my full name to add me. I'm still on tablets for pnd and been referred for councilling. It's do hard seeing our children in constant pain and there's nothing you can do hugs.
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    Hi

    Sorry to hear about your daughter, but glad things are finally moving for you....

    My daughter was diagnosed @ 18 month and is now 3... I will admit it is a rollercoaser but once you are under a consultant and nurse speciallist it becomes easier, I call my nurse speciallist with absolutly everything, they are there so use them..

    Ask away with questions, there are a few mums on here that I am sure will be here for you also.

    Hope you have a merry christmas ..



    Merry christmas Steph to all of your family! I hope you have an easy day x x x x :P

    Love
    Steph
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    Hi Susan,

    I have a little girl shannon who was diagnosed with JIA when she was just 3...she will be 8 in january so we have been coping a few years with it. As someone said it has been a rollercoaster and at first it took us a while to get her diagnosed as our gp was just puting it down to growing pains then sprains ect..untill we was going to go private and luckily a lovely consultant see us and from then on we have had great support from him.

    Shannon has been on tablet form methotrexate which was very tough as she cant take tablets and has had trauma in the past with medical things and just panics about everything so we are now on injection form methotrexate and since she has been on this she has been at her best. We still have the odd day where her knee has pain or her shoulder but generally she is well. she does struggle with her wrists though!

    If you want any info then please just ask and i will do my best to help.

    I have only just joined this site as we have been having trouble with shannons school and i can only say i have had the best support here and am so greatful. I hope you find it as good too.

    Take Care & hope lucy is in control soon & pain free.

    Have a lovely christmas

    Sam
    xx



    lucymum wrote:
    hi my name is susan, my little girl lucy has just been dyignosed she is 7!! I would love any information from other parents, or indeed young people who have lived through what we are!!!
    We are just at the start of our hard journey after fighting for years for her to be recognised as having a problem! This is step one, could anyone fill me in on the next steps lol!!!

    I hope you all are well x x

    merry christmas to all x x x x
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    hi sharons mum, i have been batteling with the docs for lucy since she was almost 3!!!
    It has been such a struggle and like you it was put down to growing pains, or things she would grow out of!!!!
    I feel so guilty now that I have not pushed it further sooner, but I just felt at a loss, I mean doctors told me every 9 months that it was nothing, and she is just such a trooper that she just got on with life and did not let it bother her.
    When she went to school after the summer the school noticed how much worse she seemed, and I must say they have been amazing!!! Her teacher pushed for her to see the school doctor who rushed through appointments with consultants, and aside from a little set back of been given the wrong bllod test and firstly been told it was not JIA she was finally correcty dignosed!!!
    Our consultant is lovely, she put lucy at ease and told her exactly what was going on! She also found out that the reason Lucy had not complained earlier, even though it was obviouse to her that Lucy had been suffering with the pain for years, was because I have an illness that may require me to have one of my legs amputated, which we discuss with our children, and poor lucy was afraid that it was the same for her!! Bless her!!!

    Lucy is coping well and is due to start next stage of treatment in the new year when the results of tests are back!!
    So far lucy is presenting with almost 30affected joints!!

    I am sorry for going on, it's just nice to be albe to talk about it to someone who understands

    I hope you all have a winderfull christmas holiday and that sharron is not in too much pain x x
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    sorry shannons mum I got jer name wrong excuse my incompitance lol!!!!!
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    Hi,

    No need to apologise. x

    Hope you have a happy new year and a healthy one for you & Lucy.

    Take Care
    Sam
    xx
    lucymum wrote:
    sorry shannons mum I got jer name wrong excuse my incompitance lol!!!!!