Parent that needs help

julie1

Hi Everyone,

I have a 10 daughter who has JIA - she takes methotrexate and folic acid, she copes very well. She has just been diagnosed 12 months. As a parent, i just hate her having to go through all of this. She tries to continue as normal, but is very frightened. They never seems to be any answers to questions like, will it ever go, any many joints will be involved, what about the future for her

What do we do???

Please help !

julie1

Hi

Many thanks for your words, I am sorry to hear about your condition. I will speak to the helpline and go to the young peoples forum. I guess it is just a wait and see, I hope after time it burns itself out.

I would like to keep in touch if that's ok. I am really upset, think after months of being told of the JIA, hospitals, medication but most of all the constant worry for your child, I think it takes its toll.

Many thanks again for your support.

babycham wrote:

Hello Julie .I am so sorry about your little girl it must be so worrying and such a lot to deal with post diagnosis ...Its difficult for adults to cope with so I can imagine how you feel I have had R/Arthritis for many years but have not always been in to much pain and have managed to maintain a fair degree of mobility ..Have you contacted the free con helpline at the top of your page they are invaluble in knowledge and can talk you through a lot of the things I dont know there is also the young peoples forum further down the page I have popped in from time to time and there you will find many parents of children with your concerns my only knowledge of arthritis in children was a friends little girl with J/Arthritis at the age of eight and at fourteen it appears to have gone completly so does it burn itself out in some cases sorry I cant be much help but I wanted to reply as you sounded so upset and I wish you and your little girl wellxx Please stay in touch if you want to LBabychamGood luck Julie

skezier

hi Julie,

Bless her its hard enough as an adult to cope with all the waiting and waiting. I wish they did it quicker for kids though!

I agree with Babycham the helplines are very good and might be able to tell you what you could do to hurry it u for her and there are other mums and dads who use the young peoples forum as well.

Your welcome here for some support anytime and there are some youngsters who come here and have had it since childhood so they will maybe know what its like from your daughters point of view. Cris x

wibberley

Hi there and welcome to the forum,

I was diagnosed with JIA aged 7 and am now 44. There really is very little out there about JIA and I am similarly frustrated - when I was a little girl, I was convinced that by now there would be a cure....and there isn't! However, treatment has come on leaps and bounds and I'm glad to hear she is doing well on the mtx.

My JIA burnt itself out around the age of 11 and stayed away until my early 20's. Again it disappeared a couple of years later and I was pretty much symptom-free until last year. I've been unable to kneel or squat down since the age of 7 but other than that I've done really well and there is still no joint damage - and I think with the right physio at the time, flexibility in the knee joints would have come back - anyway it gets me out of doing the gardening!

As has been said, there are a number of parents of kids with JIA who post on the Young People's section, so when you get some time, have a read through.

I hope your daughter continues to do okay on the meds and I'm sure others with JIA will reply to your post.

Lois x

frogmorton

Hi Julie

My cousin had it as a child and he is A-OK now, but I dont think anyone knows for sure.

The helpline will be able to suggest some books for you and I think there is one for her age too.

Hope she is ok.

You too.

Love and hugs

Toni xx

speedalong

Hi Julie and welcome to the forum, (though I'm very sorry for the reason you had to join.)

I hope the helpline and AC publications help with more info and advice.

I have OA, so can't advise, but just wanted to say it is the hardest thing when your child is ill (my S was diagnosed with epilepsy a few years ago and that was a steep learning curve,) but by joining the forum you can tap into a wealth of support and expertise.

Speedy

sharmaine

Hi Julie

What a shame to hear that young daughter has arthritis at such a young age. I recently heard about stem cell surgery but I'm not sure if this is being offered throughout the UK as yet. You never know they may discover some miracle cure in the future. There may be an article online about it. I think some people in the US are already making use of it even for OA.

I can't offer you much advice with regards to her future but wanted to send you my best wishes. Have you spoken to your GP/Specialist about your worries? I'm sure someone will come along with some good advice.

Regards
Sharmaine

julie1 wrote:

Hi Everyone,

I have a 10 daughter who has JIA - she takes methotrexate and folic acid, she copes very well. She has just been diagnosed 12 months. As a parent, i just hate her having to go through all of this. She tries to continue as normal, but is very frightened. They never seems to be any answers to questions like, will it ever go, any many joints will be involved, what about the future for her

What do we do???

Please help !

marion1952

Hi Julie

Just to echo what the others have said.. I'm very sorry indeed to hear about your daughter's JIA... That must have been a terrific shock to you.

Fortunately, there have been so many developments in arthritis treatment over the last 5-10 years, and there are many more in the pipeline... I like to keep up to date with the latest research
and constantly check the Arthritis Research UK website - it cheers me up!

Hope you find the 'young people's forum' helpful and pop into this one too when you feel the need.. I have only had RA for 2 years but have learnt so much from the people who post on this forum.

Best wishes

Marion

lindalegs

Hi Julie,

Sorry to hear about your daughter, it's always hard to see our children suffering, we'd much rather it be ourselves.

Arthritis comes in many strains from mild to aggressive and I sincerely hope she has the former rather than the latter and then it should settle down. If not she will learn to cope usually by taking each day as it comes.

I had a friend (who's now deceased) and she had the aggressive strain of J/A since the age of 2 which sadly turned into chronic RA and she died in her late 70's. She was the happiest person I ever knew, used to teach art and do watercolours herself. She was the sort of person when she walked into a room the sunshine came with her. She was married and had two lovely sons and she never let arthritis rule her life, she was an inspiration to all around her.

Life doesn't stop with arthritis we just have to learn to do things differently.

Hope this helps.

Luv Legs

julie1

Hi - Thank you for your kind words and advice. I'm sorry to hear about your condition. Hopefully things will get better for my daugher. We are just waiting to go to the hospital again this week, she has some different sites of imflammation. Thank you again.

babycham wrote:

Hello Julie .I am so sorry about your little girl it must be so worrying and such a lot to deal with post diagnosis ...Its difficult for adults to cope with so I can imagine how you feel I have had R/Arthritis for many years but have not always been in to much pain and have managed to maintain a fair degree of mobility ..Have you contacted the free con helpline at the top of your page they are invaluble in knowledge and can talk you through a lot of the things I dont know there is also the young peoples forum further down the page I have popped in from time to time and there you will find many parents of children with your concerns my only knowledge of arthritis in children was a friends little girl with J/Arthritis at the age of eight and at fourteen it appears to have gone completly so does it burn itself out in some cases sorry I cant be much help but I wanted to reply as you sounded so upset and I wish you and your little girl wellxx Please stay in touch if you want to LBabychamGood luck Julie

julie1

Hi Thanks for your kind words. I'm sorry to hear about your JIA. I think it is really frustrating when there doesn't seem to be any answers. Just over the last week, my daughter has now more swelling in her ankles and also new sites. Our local hospital has kindly arranged to see her on Friday. Perhaps she may need more steroid injections. There was talk that the mtx may have to be taken my injection - that will go down well! Thanks again.

quote="wibberley"]Hi there and welcome to the forum,

I was diagnosed with JIA aged 7 and am now 44. There really is very little out there about JIA and I am similarly frustrated - when I was a little girl, I was convinced that by now there would be a cure....and there isn't! However, treatment has come on leaps and bounds and I'm glad to hear she is doing well on the mtx.

My JIA burnt itself out around the age of 11 and stayed away until my early 20's. Again it disappeared a couple of years later and I was pretty much symptom-free until last year. I've been unable to kneel or squat down since the age of 7 but other than that I've done really well and there is still no joint damage - and I think with the right physio at the time, flexibility in the knee joints would have come back - anyway it gets me out of doing the gardening!

As has been said, there are a number of parents of kids with JIA who post on the Young People's section, so when you get some time, have a read through.

I hope your daughter continues to do okay on the meds and I'm sure others with JIA will reply to your post.

Lois x[/quote]

julie1

Thank you for your kind words. I'm so sorry to hear about your S. Thanks for the advice.
xx

speedalong wrote:

Hi Julie and welcome to the forum, (though I'm very sorry for the reason you had to join.)

I hope the helpline and AC publications help with more info and advice.

I have OA, so can't advise, but just wanted to say it is the hardest thing when your child is ill (my S was diagnosed with epilepsy a few years ago and that was a steep learning curve,) but by joining the forum you can tap into a wealth of support and expertise.

Speedy

julie1

Hello, Thank you for your kind words. I appreciate your advice. I think that is the best thing to do, take things day by day - she has currently has a flare up on joints which have not been affected. I have managed to get her to see her Consultant on Friday. It's just so worrying! It's her sports week at school this week, she has had 2 days off feeling ill, back today, she will have to sit and watch the sport events - Thanks again.

lindalegs wrote:

Hi Julie,

Sorry to hear about your daughter, it's always hard to see our children suffering, we'd much rather it be ourselves.

Arthritis comes in many strains from mild to aggressive and I sincerely hope she has the former rather than the latter and then it should settle down. If not she will learn to cope usually by taking each day as it comes.

I had a friend (who's now deceased) and she had the aggressive strain of J/A since the age of 2 which sadly turned into chronic RA and she died in her late 70's. She was the happiest person I ever knew, used to teach art and do watercolours herself. She was the sort of person when she walked into a room the sunshine came with her. She was married and had two lovely sons and she never let arthritis rule her life, she was an inspiration to all around her.

Life doesn't stop with arthritis we just have to learn to do things differently.

Hope this helps.

Luv Legs

marion1952

Hello again Julie

Sorry to hear your daughter is having a flare up.. I do hope the consultant can do something for her on Friday..

Best wishes

Marion

oneday

hi Julie1
well everything i was going to say everyone else has said...i hope you find the support and help on this site helps you a little..and as someone suggested look on the other thread for Young forum as someone on there might say the best way they would have liked the condition etc explained to them as a child.
take care x

dorcas

Hi Julie
nice to meet you... but I do wish it was in different circumstances.

I don't have first hand knowledge of JIA but just wanted to add my support and say that I hope that your little girl's illness follows the pattern where the inflammatory disease disappears soon and does not continue to impact on her childhood activities.

other peeps have offered such good advice already and I know the helpline will be a great source of support to and can signpost you to support websites/ parent groups.

please remember we are here for you and want to help if we can.

love and strength.

Iris xx

worriedmum

Hi Julie,
I normally post on the parents online forum here, but it doesn't seem to be being well used at the moment, but I am trying to revive it!.
My daughter was diagnosed with JIA 2 years ago, aged just two years old.
She copes really well and has had 7 joints injected since diagnosis, the last one, 10 days ago.
She went for her Eye screening yesterday and unfortunately she has Uveitis in both eyes so has just started loads of treatments and will be reviewed next week. Very scary time here.
I would love to keep in touch with you and offer any support I can to you and your daughter. The period of time immediately post diagnosis is really frightening and you just want it to go away, but trust me you learn to accommadate arthritis in your family life and you get over the initial shock. Infact you become a bit of an expert!
I'm sorry your daughter has been diagnosed with JIA. Children are amazingly resiliant and my daughter regularly makes me very proud at hospital visits.
Please get in touch and I'm sure we can support eachother, particularly you at this difficult and shocking time.
Sam.

[Deleted User]

Hi,
Moderator moved this topic to the YP forum where it is more appropriate

Moderator WMGC

julie1

Thank you so much

marion1952 wrote:

Hello again Julie

Sorry to hear your daughter is having a flare up.. I do hope the consultant can do something for her on Friday..

Best wishes

Marion