Juvenile Arthritis

mandy13

Hi,

Just looking to introduce myself and say i would be very grateful of any advice or support that anyone can provide me!

My little girl, Karys is 3 and after being unable to walk for 9 whole weeks and numerous visits to our GP, Health visitor and hospital and what seems like a million tests she had been diagnosed with juvenile arthritis. This was a week past on Tuesday so 9 days ago.

The hospital have advised me that physiotherapy would commence this week and that they would be sending me out information about Karys' condition to inform me fully of what it to expect and what happens next. After calling both the physiotherapist and hospital on Monday i am now seeing the physio on Wed next week and still waiting for the information from the hospital!!!

Also the hospital advised we were being referred to Yorkhill (Childrens hospital) who would treat Karys by giving her steriod injections into her legs. They advised hopefully before we go on holiday which we go three weeks on Monday. To date we still havent heard from them.

At the moment i just feel i still do not have a clue whats going on and i have no control what so ever. I seem to be waiting for someone to write or call me with regards to this. Karys is still in a lot of pain and it is just such a shame. She has been on naproxen for four weeks now which has slightly improved her pain but still only being able to shuffle about our house and cant do any sort of walking outside for any length.

If anyone has similar experiences i would be gratefully appreciative.

Thanks alot!

Mandy

dreamdaisy

I cannot help you on this, but I wish you all the best. You may be better off checking the young persons' forum - sufferers and mums post there and they may be able to offer more in the way of support. I am so very sorry. Dreamdaisy

mandy13

Thanks Dreamdaisy i have also done this.

Thanks so much for replying

dreamdaisy

Sorry! I didn't mean to appear rude - I'm fairly new to all this and therefore assume others are too. I'll keep an eye on the young thread for updates about your girl.

Wishing you well. DD

woodbon

Hello,
I too do not have the experience to help you, as I'm a 55, with OA.

All I can say is that it sounds as if they are going to try steroid injections, to help with the inflammation. These drugs can give quite quickly, pain relief and make you feel much better for a while, however, it isn't a cure and injections can only be done a certain number of times. Something along these lines are my guess for the sort of treatment that she may be offered, but I am not at all a medical person, and I am not sure of the treatment the children need.

You have been left very much on your own and I think that is not good and feel very, very sorry for you. If I were you I'd talk to my GP, to the secretary of the consultant that saw your daughter and explain just how upset and worried you all are. Ask for the consultant to give you a ring and explain the procedure, maybe even see you in person to explain.

There is also PALS, which your hospital should have, they deal with complaints and problems that patients have.

I really hope you soon hear something. Stay as strong as you can. I hope someone who has been through this with there child will get in touch. Also, right the Helpline, they can often give really good advice and have lots of information that may help.

Good luck, lots of love Sue xxx

dreamdaisy

Hello, I hope you are all OK today.

A thought just flicked thro my head - you say that Karys has trouble walking - do you have any form of walking frame for her to give her support? Crutches probably wouldn't be practical, they need co-ordination and 3 is very young, but a frame might be the answer. I think you would have to contact either the children's ward or the physio section at the hospital. If you still haven't heard about your appointment, chase them up.

One thing we all find is that we have to be pro-active, we have to chase up and remind people about appointments etc. - it's an added burden. Dreamdaisy

frogmorton

Hi karys

I am so sorry for you and your darling daughter. She/ you do not deserve this

have you checked out the rest of the site/? I know there are books and booklets CHAT- a guide for parents is one of them

Also if you put a search in (top rt hand corner) you can serach for the subject. From time to tiome we do get Mums and Dads who have very young and newly diagnosed Children.

Can i wish you all teh very best and resuure yoy that we are here and can help in some ways as our own experience may well be similar.

I for one find Ice packs(in a teatowel) help my joint if I am falring?

Take care

Love

Tonix x

sanmar63

mandy13 wrote:

Hi,

Just looking to introduce myself and say i would be very grateful of any advice or support that anyone can provide me!

My little girl, Karys is 3 and after being unable to walk for 9 whole weeks and numerous visits to our GP, Health visitor and hospital and what seems like a million tests she had been diagnosed with juvenile arthritis. This was a week past on Tuesday so 9 days ago.

The hospital have advised me that physiotherapy would commence this week and that they would be sending me out information about Karys' condition to inform me fully of what it to expect and what happens next. After calling both the physiotherapist and hospital on Monday i am now seeing the physio on Wed next week and still waiting for the information from the hospital!!!

Also the hospital advised we were being referred to Yorkhill (Childrens hospital) who would treat Karys by giving her steriod injections into her legs. They advised hopefully before we go on holiday which we go three weeks on Monday. To date we still havent heard from them.

At the moment i just feel i still do not have a clue whats going on and i have no control what so ever. I seem to be waiting for someone to write or call me with regards to this. Karys is still in a lot of pain and it is just such a shame. She has been on naproxen for four weeks now which has slightly improved her pain but still only being able to shuffle about our house and cant do any sort of walking outside for any length.

If anyone has similar experiences i would be gratefully appreciative.

Thanks alot!

Mandy

Hi Mandy,
I was diagnosed with JRA at the age of one year (I'm now 47)and I can honestly say that I feel for your little girl.
The main advice I can give to you is to get on that phone to whoever youre waiting to hear from - and NAG! Dont let them fob you off, your child is in pain and you want to know what's going on. If you don't get any joy, then get on to your GP/Health visitor and ask them to get involved.
In the meantime, hot water bottles on aching joints might help or frozen peas on swollen joints - swimming would be beneficial too, as it relieves the weight from the joints.
I'm sorry if i haven't been much help - but you have all the support that I can give you.
A big ((())) from me to you both,
Love, Sandra xxx

tillytop

Hi again Mandy - have replied to your second message on the "Hello" forum but not sure if you'll look there again so posting it here too. Hope you found the literature and/or managed to speak to the helpline. Hopefully as you get more info things will feel slightly less scary - at least you will know what you are dealing with. Please please don't apologise for "ranting"! We all need to be able to let off steam when circumstances are so difficult - and you will find plenty of us doing it here - and plenty of really great support from people who have some understanding of what you are trying to deal with. Good luck with physio on Weds - will be thinking of you - and if still no joy from hospital by then, maybe physio can help you to follow up?
Please do post again on LWA forum to let us know how things are going - and remember that you are not on your own with this - we're here to support where we can and just to listen if you need to talk.
Love Tilly x

mandy13

Hi Everyone,

Thanks so much for all the support and advice yous have all given.

I have tremendous support from my family however i somewhat feel better hearing from all you guys as i feel you all know better what yous are talking about because yous have been in a similar situation.

Off work this weekend which is going to be a good chance to relax and spend time with Karys and see if i notice anymore change in her.

Also got Wed and Thurs off this week so makes me feel better knowing Karys will be with me during these days, i know my family are all capable of looking after her but i just want to be with her all the time at the moment i wish i could be with her 100% of each day.

Again thanks so much for all your comments they have really helped!!!

I will keep yous updated with Karys

xxxxx