Mum of 19 year old with arthritis

pollyj

Hello,
I'm new on here, I would like to hear from anyone with a child who suffers from arthritis. It's hard watching my brave beautiful child deal with this illness. How do other parents cope?
Polly

lucymum

i felt exactly like you, with any illness!! I could not imaginr how i would cope, but you do!!! we all just do our best for our kids, however we can, and get on with life!!!!
All we can do is help, remind them how amazing they are and that this is an illenss not a life sentence, they can be happy and live a full life!!! x x
i hope all goes well for u and ur child x x x
big hugs x x

pollyj

lucymum wrote:

i felt exactly like you, with any illness!! I could not imaginr how i would cope, but you do!!! we all just do our best for our kids, however we can, and get on with life!!!!
All we can do is help, remind them how amazing they are and that this is an illenss not a life sentence, they can be happy and live a full life!!! x x
i hope all goes well for u and ur child x x x
big hugs x x

Hi,
Thank you. How old is your child? xx

anniesmum

pollyj wrote:

Hello,
I'm new on here, I would like to hear from anyone with a child who suffers from arthritis. It's hard watching my brave beautiful child deal with this illness. How do other parents cope?
Polly

Hi Polly,
I am new on here to. It is so unbelievably hard isnt it and so scary for their future. Annie is nearly 6 and we have had a tough few months. I suppose I am coping, although to be totally honest at times I am not so sure!! Keep talking to friends, partner, how you feel and don't apologise for not being brave because I do know us mums have to find ways to keep strong for our babies.
Hope your son is having a good day.
lucy

pollyj

anniesmum wrote:

pollyj wrote:

Hello,
I'm new on here, I would like to hear from anyone with a child who suffers from arthritis. It's hard watching my brave beautiful child deal with this illness. How do other parents cope?
Polly

Hi Polly,
I am new on here to. It is so unbelievably hard isnt it and so scary for their future. Annie is nearly 6 and we have had a tough few months. I suppose I am coping, although to be totally honest at times I am not so sure!! Keep talking to friends, partner, how you feel and don't apologise for not being brave because I do know us mums have to find ways to keep strong for our babies.
Hope your son is having a good day.
lucy

Hi, I'm not sure how this message stuff all works but I did send a reply which may be in your private messages. Polly

marooned

my daughter is 23 and it has been a tough few weeks since she was diagnosed with ra, she is not taking the mtx she is just trying the hydrocloxlerine(prob spelt that wrong) . i have spent hours researching and reading up on ra, there are some great sites, i have just bought her a tens machine she is trying that at the min. we have been told to keep upbeat as when she gets a bit down it can make symptoms worse,
hope you are doing ok xx

pollyj

marooned wrote:

my daughter is 23 and it has been a tough few weeks since she was diagnosed with ra, she is not taking the mtx she is just trying the hydrocloxlerine(prob spelt that wrong) . i have spent hours researching and reading up on ra, there are some great sites, i have just bought her a tens machine she is trying that at the min. we have been told to keep upbeat as when she gets a bit down it can make symptoms worse,
hope you are doing ok xx

4

Hi,
My son has been taking mtx and had some long periods of remission, it has really helped. He was diagnosed at 15 and been absolutely amazing. It is heartbreaking to watch him go through this but the treatment does help enormously and he is able to lead a normal life as long as he is sensible. I'm not sure the 'sensible' bit is too easy though as he's at Uni and enjoys student life!! I hope things go well for your daughter (and you) Best wishes, let me know how you're doing. Polly x

illihor

Hello and hugs, it's so hard to watch them in pain. My daughter is 4 and was diagnosed last year. She's on mtx as well as a host of other medications. I have found distraction to be the best but then she is young and young children even when poorly with say ear infection/cold etc something that would probably floor us you give them some med and they bounce around and you sit in a gp's waiting room wondering if there is anything actually wrong.

Kind of a similar thing with my daughter and all her meds. Sometimes I don't even notice she's got JIA then suddenly something happens, (change in weather, flare up, bump/fall etc) and omg don't you know about it. A simple scrape will seem 10xs worse for them and they scream in agony. i try and involve her in things she loves (granted at this age it's limited) colouring, puzzles, but mostly she just wants to be left alone.

I struggle after a flare up to get her using the stairs again, so resort to sticker charts when I know/feel she's doing better and can manage them. I haven't yet reached the teen years with any of my children and totally dread it but one consolation is at least you know exactly where it hurts I find that my hardest challenge at the moment, she knows it's inside and can say knee etc but at times it's everywhere hurts (she has polyarticular in 30+ joints) and you can't even hug her for the pain.

Warm baths/showers help her as do the wheat bags you can pop in microwave and zap as they mould better against the body, she loves it and I know she's finding it tough as she will get it out and ask for it. She isn't very keen on the cold ones so I don't bother but go with what she likes.

Sorry have rambled on a bit here. hugs to you as well it's so tiring and draining coping with all this but somehow we just learn to get on with life, I have 3 other children and all of them help keep her and me going.

Michelle

marooned

pollyj wrote:

marooned wrote:

my daughter is 23 and it has been a tough few weeks since she was diagnosed with ra, she is not taking the mtx she is just trying the hydrocloxlerine(prob spelt that wrong) . i have spent hours researching and reading up on ra, there are some great sites, i have just bought her a tens machine she is trying that at the min. we have been told to keep upbeat as when she gets a bit down it can make symptoms worse,
hope you are doing ok xx

4

Hi,
My son has been taking mtx and had some long periods of remission, it has really helped. He was diagnosed at 15 and been absolutely amazing. It is heartbreaking to watch him go through this but the treatment does help enormously and he is able to lead a normal life as long as he is sensible. I'm not sure the 'sensible' bit is too easy though as he's at Uni and enjoys student life!! I hope things go well for your daughter (and you) Best wishes, let me know how you're doing. Polly x

she is not to bad at the min, she is still not taking the mtx , but has a docs appt on the 05/05 to discuss it further, i hope you are both doin well , i still cant seem to get my head round it all if i could take all the pain away i would , she gets on really well with her physio but didnt have such a good time with the occ therapist, if we needed anyhthing for the house we cant get any help as the house is not rented it is owned by me, have a good weekend xx

lucymum

pollyj wrote:

lucymum wrote:

i felt exactly like you, with any illness!! I could not imaginr how i would cope, but you do!!! we all just do our best for our kids, however we can, and get on with life!!!!
All we can do is help, remind them how amazing they are and that this is an illenss not a life sentence, they can be happy and live a full life!!! x x
i hope all goes well for u and ur child x x x
big hugs x x

Hi,
Thank you. How old is your child? xx

Hi my little one is 7, althought they think she has been left undignosed since about 3 years of age.
I also have had a debilitating ilness since the age of 11 so can relat to both sides of our ever lasting battle of having disabled kids and watching them be ill. I get a lot og guidence from my mam on how she coped with me as a kid, and as i can totally understand how it feels to be ill and want to do everything every other kid is doing i hope i relate well to my little girs, although that does not always mean she likes to hear my opinion, am sure she is ia 7 year old with hte mind of a 17 year old!!! lol
i hope ur child, although older, is feeling better

jenifur

Hi, Sorry to butt in, im not a mum, but i have one myself! I have arthritis and have had pretty much forever. i remember watching the pain in my mothers eyes when i was upset or hurting and felt awful because as much as she knew there wasnt really anything she could do to help me, i knew i couldn't make it better for her either. Times shes said she wishes it was her and not me, i just wish it didnt exist! Im 23 now and although i know it still pains my mam to see me pained i think its easier on her as im happier in general. I'm desperate to be a freelance writer when i finish uni, so i thought i'd get a bit of unpaid practise, consequently ive started a blog. It's supposed to be funny as well as informative and i think if i'd have seen it when i was younger it would have given me a boost. please have a look at it and pass it on to your older childern, no younger than 15 i'd say, given my future plans for posts. you and they might find it good for a giggle, while also dishing out some handy tips and advice also if you add me on facebook you can stay informed. I hope that might help. x x x x (Links removed due to forum rules)(Moderator J)