Back from Hossie

illihor
illihor Member Posts: 283
edited 3. Dec 2009, 19:20 in My Child Has Arthritis
And finally I have been listened to. Although the Dr was amazed by how far it has spread and what she looks like etc. She has to go back first thing in the morning for bloods and then x-rays of her feet, hands and elbows gulp. That will be fun nottttttt considering she won't let anyone touch her.

The Dr wants to speak with her collegues in Bristol about Kayleigh as she has nodules on her bones that is very rarely seen in children but she told me to be prepared to go up there to be seen as it's that rare and they specialize in this up there. That's a 2 hour drive just to get ther but I would rather her get the help than not.

So far the Dr has diagnosed her with Poly-Articular Juvenile Idiopathic Arthritis but she said that could change depending on what the bloods come back with. She has been given different meds but I can't get them yet due to pharmacist who said the first one needs to be stated either capsual or syrup but as she's 4 i'm guessing syrup, then the second one he said it doesn't come in the dose/amount and it would have to be ordered in specifically for her and could take 5-7 days :o

the Dr's eyes were welling up at one point towards the end and I was to but think it's probably down to the fact at the beginning going through details etc that there is only 2 weeks in age between Kayleigh and her own daughter. Think it brings it home all the more when faced with something like that and seeing just how much pain Kayleigh actually is in.

They watched her draw and she walked, well took a couple of steps to get in her pushchair as she's that sore today.

We have been assigned a Rheumatology paediatric nurse who is very nice. Now just to worry about tomorrow with the bloods and x-rays. I've been given magic cream to put on her before I leave to take boys to school so it's numb ready for the blood test. They gonna try out of her hand as they can't get her arm straight.

Wish us luck for the morning, she's in agony and refused dinner yet again tonight. It feels good to be taken seriously at last although Kayleigh has hated being spoken about again re what she can/can't do.

Comments

  • elviswife
    elviswife Member Posts: 12
    edited 30. Nov -1, 00:00
    illihor wrote:
    And finally I have been listened to. Although the Dr was amazed by how far it has spread and what she looks like etc. She has to go back first thing in the morning for bloods and then x-rays of her feet, hands and elbows gulp. That will be fun nottttttt considering she won't let anyone touch her.

    The Dr wants to speak with her collegues in Bristol about Kayleigh as she has nodules on her bones that is very rarely seen in children but she told me to be prepared to go up there to be seen as it's that rare and they specialize in this up there. That's a 2 hour drive just to get ther but I would rather her get the help than not.

    So far the Dr has diagnosed her with Poly-Articular Juvenile Idiopathic Arthritis but she said that could change depending on what the bloods come back with. She has been given different meds but I can't get them yet due to pharmacist who said the first one needs to be stated either capsual or syrup but as she's 4 i'm guessing syrup, then the second one he said it doesn't come in the dose/amount and it would have to be ordered in specifically for her and could take 5-7 days :o

    the Dr's eyes were welling up at one point towards the end and I was to but think it's probably down to the fact at the beginning going through details etc that there is only 2 weeks in age between Kayleigh and her own daughter. Think it brings it home all the more when faced with something like that and seeing just how much pain Kayleigh actually is in.

    They watched her draw and she walked, well took a couple of steps to get in her pushchair as she's that sore today.

    We have been assigned a Rheumatology paediatric nurse who is very nice. Now just to worry about tomorrow with the bloods and x-rays. I've been given magic cream to put on her before I leave to take boys to school so it's numb ready for the blood test. They gonna try out of her hand as they can't get her arm straight.

    Wish us luck for the morning, she's in agony and refused dinner yet again tonight. It feels good to be taken seriously at last although Kayleigh has hated being spoken about again re what she can/can't do.

    hi,

    I wish you vast amounts of courage for your daughter and luck for tomorrow. I am so pleased for you to finally have a diagnosis. even though its still rubbish.
    Your daughter has got the same type of arthritis as my daughter has.
    magic cream is great for children, try some on the back of your hand too if Kayleigh is unsure, she'll like you trying some too.
    talk to your nurse, they have time and tips for you to help. all i could do when we found out was cry, i didnt know what to do for the best, how to help or anything. i just felt so helpless.

    i hope everything goes ok for you tomorrow. x
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    It must be heartbreaking to see your little girl suffering and I'm so sorry that she's in such terrible pain. However, it's good that she's finally getting the right help and hopefully, her pain will be under control very soon.

    Sending you a bundle of strength for tomorrow. Good luck to Kayleigh and to you. Let us know how it goes. Will be thinking of you. x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    That's how I'm feeling at the moment and now the baby has finally gone bed (little tinker) my guard has suddenly gone and I'm sat crying.

    I have so many questions whizzing around in my head even though I was prepared for today but it's all gone mad inside my head now.

    they have taken her off ibuprofen and put her on Naproxen as they don't want to start anything till they know for sure with bloods. She said that she most probably wants to have her in for 3 days to give iv steroids as a short term solution just to get her pain levels down. She is considering Metho (can't remember the name but i know it's mentioned on here loads) she is hoping not to do joint injection things as there is so many but that's a consideration she's will to take depending how she reacts with other things.

    They've also given her Omeprazole in place of gaviscon hopefully this will taste much better.

    I was late getting there today blood unsuspected roadworks and to think i live 5 mins (10tops) away from hossie I left at 3.45 appt was at 4.40 i got there at 4.50 got parking immediately though (thank god for blue badge from local council which came on friday) got seen at 4.55 and didn't get out till 6.00pm :o When I apologised again at the end for being late she said "I would have waited all night to see this little girl from what your GP has written on this letter" :o good job lee (DH) had called up to say I was stuck in traffic. She said I'm glad I waited as she needs help now and I'm surprised she was on the system waiting to be seen for this long. Even the bloods couldn't be done till Friday but the Dr has pushed and we're being seen on ward now just to get them done as she wants it asap.

    I don't know how I go through the days it's like autopilot mode kicks in and i'm strong for her (go toilet a lot but that's to let the tears seep out unoticed) but as soon as kids in bed I break down :( doesn't help that I'm struggling getting over PND at the moment.
  • elviswife
    elviswife Member Posts: 12
    edited 30. Nov -1, 00:00
    illihor wrote:
    That's how I'm feeling at the moment and now the baby has finally gone bed (little tinker) my guard has suddenly gone and I'm sat crying.

    I have so many questions whizzing around in my head even though I was prepared for today but it's all gone mad inside my head now.

    they have taken her off ibuprofen and put her on Naproxen as they don't want to start anything till they know for sure with bloods. She said that she most probably wants to have her in for 3 days to give iv steroids as a short term solution just to get her pain levels down. She is considering Metho (can't remember the name but i know it's mentioned on here loads) she is hoping not to do joint injection things as there is so many but that's a consideration she's will to take depending how she reacts with other things.

    They've also given her Omeprazole in place of gaviscon hopefully this will taste much better.

    I was late getting there today blood unsuspected roadworks and to think i live 5 mins (10tops) away from hossie I left at 3.45 appt was at 4.40 i got there at 4.50 got parking immediately though (thank god for blue badge from local council which came on friday) got seen at 4.55 and didn't get out till 6.00pm :o When I apologised again at the end for being late she said "I would have waited all night to see this little girl from what your GP has written on this letter" :o good job lee (DH) had called up to say I was stuck in traffic. She said I'm glad I waited as she needs help now and I'm surprised she was on the system waiting to be seen for this long. Even the bloods couldn't be done till Friday but the Dr has pushed and we're being seen on ward now just to get them done as she wants it asap.

    I don't know how I go through the days it's like autopilot mode kicks in and i'm strong for her (go toilet a lot but that's to let the tears seep out unoticed) but as soon as kids in bed I break down :( doesn't help that I'm struggling getting over PND at the moment.
    my daughter on ibuprofen, calpol, methotrexate, on and off steroids. we going back in next week to have steroid iv in hand again.
    things are up and down, but things are slowly improving for her. she had all her joints done back in june this year. this enabled my daughter to climb up the stairs for the 1st time in over a year. its been great seeing improvements slowly. its like your getting her firsts all over again. she keeps having flare ups but trying to keep on top of them.
    hang in there, your doing a great job. just take every day a step at a time.
    my 9 year old used to get upset at school as she was worried about her little sister, i never found out till another childs mom(friend) told me. i just have to keep reasuring her that her sister is up and down but the hospital is making her better.

    try to get some sleep, you will be fine tomorrow, hospital staff are great and very supportive.xxx
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Dear Michelle

    It was heartbreaking to read your message. they have all been heartbreaking. At least you are both in what it would seem, very good hands now and hopefully you will get all the help that is needed for your little girl.

    I really do not know how you cope with it all. I know we get this inner strength but you have so much going on in your life and to see your little one suffering so must be terrible.

    My heart so goes out to you and your little girl and your whole family. You do need that time to yourself, be it in the loo and in the evenings to really let go. No one could keep in the emotions that you are going through 24/7.

    I do hope that today went alright for you both. You are a wonderful mother, the best.

    Lots of love, hugs and strength to carry on - you are doing all you can and more and now you are being heard too. That must be a great relief for you that you are now sharing all this with the professionals.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    This morning went well if not very long. We got there about 9.15 didn't leave till just after 12. We got seen immediately and had another long chat (well over an hour) and good look over Kayleigh and I even found out things I didn't even know were wrong with her like she can't move her head as her neck is sore, and she's so swollen in most places I guess I've just gotten used to it. On certain ones I could say for def that she was swollen and the Dr was glad that i could say stuff like that and said she uses parents a lot as children don't know how to say etc.

    Kayleigh then went on to have bloods taken, 8 x-rays, medical photos to keep a record of how her nodules are progressing, then to pharmacy to get her meds. She told me that once she had gotten some things back she wanted to call up Bristol Hossie and speak with them and then give me a call back.

    I then got home gave girls lunch, Kayleigh to nursery, then onto a meeting then back to school to get them all, where Christopher announces it's wednesday and isn't it swimming today eeeek, so legged it back to car, back home to get the stuff, off to swimming, back home get dinner sorted just about to dish up and phone rang.

    Twas the Dr from this morning she has spoken with the guy at Bristol and they want to see her next week either monday or thursday I will get a phone call from them possibly tomorrow or friday eeeek. It's all come as bit of a rush and lots of other things have been said but it's finally all starting to happen.

    The Dr has mentioned steroids again, but also said that a possible lumbar puncture (sure that's what she said something about bone marrow in her back under a GA) might be needed and either here or Bristol will sort that out.

    I have to say I'm super duper impressed with Kayleigh today, what a brave soldier she has been. She already knows this Dr won't hurt her and I even had her laughing and giggling trying distraction so she could look at feet and knees properly. She let the dr feel her tummy and was a total star. Got a bit scared at x-ray when it made a noise but was fine after that. Bloods were a bit loud lol but while they were drawing it out she was brills (she felt it go in and I knew instantly when they took it out again) she was funny though when I took her nursery she finally realised her hands were numb and said they feel funny pmsl.

    Again I'm just starting to sort it all out in my head but it's so much I don't know where to start, I was able to tell her today things I couldn't yesterday she asked me what was she like at christmas last year and I said to her tbh I don't remember I had PND really badly after Stephanie (was born oct 08) and I was put on meds and councelling but till about April (coincidentally when I first noticed something wasn't right) I really don't remember much from the time she was born till then. She's noted it all down and told me not to worry about it but I feel bad.
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    HI MIchelle,

    have only just seen your post and am amazed at what you are dealing with so well.

    I am thinking of you both and sending lots of hugs (((((((( )))))))))

    so glad you sound to have a very very good doctor on the case now.

    Your daughter is so lucky to have a mum who will fight to get her the help she needs - so well done for keeping pushing for help.

    hgus to you both (((())))))))) ((((((((( ))))))))))