Help and support needed ref my 6 year old daughter

clairemanchester

Hi

Can anyone give me an idea for what the future can hold for my 6 year old daughter?
She was diagnosed at age 3 with systemic JRA, after a few weeks in hospital she improved and was good, medication working and only very slight flare ups. But 3 years on she has had a big flare up where her neck and elbows are now very stiff along with the knees, ankles and wrist. From the beginning of June we have been in and out of doctors and hospitals and it is so upsetting seeing our bright playful daughter becoming very quiet, upset and in so much pain. We are now looking at starting her on Infliximab along with methotrexate and prednisolone but scared of what side affects she may have and of the long term effects. Can anyone advise?

Thanks

Claire x

butterfly1

Hi Claire

It might be worth posting on the young people's forum on this site as a lot of them started out with JA. I'm in my 40s and only diagnozed at age 40 so only have adult experience of this. I'm not sure what the side effects are like for children.

elnafinn

Dear Claire

I am so very sorry to read your thread. There have been a few mums calling in lately about their babes and children. It breaks my heart to read about them all.

Why not Private Message these mums on the thread that I bumped up for you called "Parents out there" and also as said previously have a read of some of the threads on the Young people's zone. There are a few mums there and you could private message them all and hope they are still looking in on the site and they will help and support you.

You could also message or phone the helpline number at the top of the screen. They are all lovely people there ready to help us and they will have some suggestions and point you in the right direction. They will do their very best for you, that is for sure. You may not get through first time because it is a busy line but persevere and help will be there for you at the other end of the phone.

Love to you and your little one,

Elna x

sharmaine

Hi Claire

I'm sorry to hear about your little girl. I'm sure someone on the site will come back with lots of advice/information.

In the meantime continue to be strong.

Warmest regards and cyber hugs to you both.

Sharmaine

mrsdalloway

Hi I am not much help either but my heart goes out to you. Hope you find the help you need maybe give the helpline number a ring and they may be able to point you in the right direction. x

lauramuk

Hi claire so sorry to hear about your daughter

I was diagnosed with JIA at 14. It was a hard thing to understand because i thought only old people got arthritis (No offence to anyone LOL :oops: ) And i know it will be harder for a younger child to understand and cope with but the support of my family helped me ALOT.

It was a scary time seeing doctors and being given meds and scans but my mum made it all simple and explained that trying new things could help me.

Im 19 now and totally accept what i have. Its a pain at times as it restricts me socially at times but because ive had it since being young you just come to terms with it. And as hard as it is i think theres times too that your daughter will be run down and emotional (im going through that at the minute hence joining this site today for support!!) and also sore but that will pass...I think everyone goes through those times but knowing my mums there to give me a hug when im feeling a bit upset is a great help!

Sorry about the long post but i hope it helps!

elnafinn

Hi Laura

A big welcome to the forum. I am sure you will be able to help many people on here. Thank you so much for answering this thread. I so feel for all you youngsters that get this disease.

I am sorry you are going through a bad patch at the moment. We are all here for everyone and try to help each other as much as we can and always offer loads of suppport.

I see you have already posted on the other zones which is great.

Look after yourself,

Luv
Elna x

luckybug

I think your daughter will have a much better quality of life than I do, as they have so many good drugs out now to stop the deformity, I have fused wrists arms, my neck is stiff, but I can get around, I think I'm quite lucky to have got to 44 and had only a small amount of surgery, I have had an elbow replacement and toes straightened, I cope on my own, it's a godsend having my mum and sister and her children close by, I think the future will be bright, there will be lots of drs appointments, physio, possibly swimming. From a young age I was given every medicine going, steroids, gold injections, predisonal, you name it I have had it, cortisone injections in my joints where a regular occurrence, but now they put the children to sleep while they do it, wish they had been so kind when I was small, I used to bite chunks out of nurses who held me, OUCH!!! Theres a good chance it could leave her for a while as it did in me, I had quite a few good years, suppose you call it remission when I was a teenager, but then in my late 20s early 30s it crept on, once again.
Theres nothing I cannot do if I put my mind to it, my mum used to make me do things for myself, people thought she was hard on me, and so did I lol. But looking back it made me independant, I moan on here cos if I moan in front of my mam or sister, they take no notice, mum tells me of when I was really small and would want to eat something and I couldn't get it to my mouth, she said I used to scream the house down, and she used to go for a weep, but when she returned I had found a way, and I think personally she was right. Good Luck to you and your daughter, arthritis is not the end of the world, I have a friend who I went to school with who was a lot worse off than me had many more operations, she's now happily married with a young daughter, and leading a normal life.

woodbon

Hi, I'm sure your daughter will benifit from a lot of the research thats going on at the moment and will be able to lead a full and happy life. It must be very hard for you to see her suffering now and I send you all my best wishes. I hope you find some people on here who can give you some tips and tell you how they manage.
Love Sue

clairemanchester

butterfly1 wrote:

Hi Claire

It might be worth posting on the young people's forum on this site as a lot of them started out with JA. I'm in my 40s and only diagnozed at age 40 so only have adult experience of this. I'm not sure what the side effects are like for children.

Thank you for your advise!

clairemanchester

lauramuk wrote:

Hi claire so sorry to hear about your daughter

I was diagnosed with JIA at 14. It was a hard thing to understand because i thought only old people got arthritis (No offence to anyone LOL :oops: ) And i know it will be harder for a younger child to understand and cope with but the support of my family helped me ALOT.

It was a scary time seeing doctors and being given meds and scans but my mum made it all simple and explained that trying new things could help me.

Im 19 now and totally accept what i have. Its a pain at times as it restricts me socially at times but because ive had it since being young you just come to terms with it. And as hard as it is i think theres times too that your daughter will be run down and emotional (im going through that at the minute hence joining this site today for support!!) and also sore but that will pass...I think everyone goes through those times but knowing my mums there to give me a hug when im feeling a bit upset is a great help!

Sorry about the long post but i hope it helps!

Hi Laura

Thank you for your reply, it has helped, you keep strong! x

Thank you to everybody else as well, really appreciated!

To keep you posted, my daughter is currently in Alder Hey who are fantastic with her. Their care for the past three years has been excellent, worth travelling here! We will be in and out for the next few weeks but fingers crossed once the arthritis dampens down they can start the new treatment next week.
Thank you again xx

jackie1955

Hi Claire,

I didn't know much about arthritis until I got diagnosed with RA this year, just that it was something that affected 'old' people.

And, in my early fifties, I felt 'cheated' to have had this happen to me at such a 'young' age! Needless to say, I am a lot more clued up now about the condition, and I have been shamefaced about my ignorance to the suffering that people of all ages have to go through.

I am very sorry to hear of anyone getting diagnosed, but when its the very young, oh! how my heart goes out to them. And to their family too. However, I don't want to sound foreboding, as I know from experience that the folk on here lead good lives in spite of arthur.... and they do live life to the full!"

Sending you all my warmest wishes.

Jackie x

eckstardeluxe

Hi there

I'm very sorry to read about your daughter. As others have said there are quite a few posts in the young people's forum about this, lots of helpful posters there.

I can't really help except to say I've had Osteoarthritis since I was 12. I only found out this year. I had alot of pain all my life due to a serious illness as a child but because I assumed my pain was just from that, I got used to it and I was off doing marathons and jumping out planes and moaning how sore my back was :shock: All of these things accelerated my illness. The reason I mention this is because I wish I'd known what was wrong. If I knew I'd have avoided activities that would make me worse, ate more healthily, just looked after myself better.

I think your daughter is very lucky to have you, you are obviously getting out there and finding out the most you can about her condition to see what can be done to help her. I really hope someone can give you the answers you need. Best wishes to both of you.

Eck
xxx

mistywillow

It must be so hard for you to watch your daughter in pain and not always be able to make her better. I know I am glad it is me that has RA rather than my children and I know my mother found it so difficult when I was in and out of hospital as a child.
You should get some valuable information on here and I wish all the best for you and your daughter.

Luckybug
You certainly are a plucky lady! You have an amazing attitude! Arthur has met his match!!
Wishing you well too
Gillx

cazaline

Hi Claire,

I'm sorry to hear about your daughter. I am 22 years old and have had Arthritis since I was 6 so I have an understanding of what your daughter is going through. Although I can't remember much of my life when I was younger, I know how much I suffer now.

Luckily the meds have improved over the years, and if you can, make sure she can get on an Anti-TNF if she isn't already.

One thing I do remember when I was younger, is that my Mum used to make me use a wheelchair wherever we went, and this has stuck in my mind very well because she would make me use it even if I was able to walk (she would never let me attempt to walk). The reason I mention this is because there will be times your daughter is able to do certain things and times when she is not. If she can walk, let her walk even if it's just for 10 minutes, but just make sure she doesn't over do it...always bring a wheelchair, but give her a chance. Let her attempt to do as much as possible.

Make sure she does exercises every day and keeps her joints moving constantly. This is something you need to watch out for when she hits her teens. I rebelled and stopped taking my medication and doing exercises, and this has resulted in very little movement left in my joints and that is something I now have to live with - all because of my stubborn-ness!

Hydrotherapy is a great idea, the water keeps the joints moving and eases the pain.

I agree with everything Laura has said...you do come to terms with it, but there will be times where she is in a lot of pain, feels run down and not a lot can be done. Another mistake I have made is keeping it a secret from a lot of my friends, and this can play havoc on your mind and emotions, especially when pain is involved. I've had my fair share of people call me lazy because of it, primary school teacher included, and she knew about my condition! So make sure people are aware of her condition and how it can affect her, both physically and emotionally.

One thing I don't know much of is how it affected my Mum and how she coped, maybe you could shed some light on how you are coming to terms with this?

I hope I was of some help, but if you have any questions at all please do not hesitate to message me .


Caroline x