Help....My 3 year old has just been diagnosed with JIA?

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

illihor

First of all masses of HUGS to you, it's so hard seeing anyone in pain even more so when it's your own child and you don't know what is wrong.

My Daughter is 4 but was diagnosed at 3 years with Polyarticular JIA. Which basically means 5 or more joints she has at last count 30+ they had written in her notes

Have they stated where the arthritis is whether hips/knees/ankles feet etc or have they just said legs? Seems odd to give such a generalised area like that and not be more specific or they could be referring you to another hospital as they just don't have anyone qualified enough to deal in childhood arthritis so they are unable to help you further.

I hope the referal for the other hospital comes in soon if not try calling the main switchboard for that hospital and be asked to put through to rheumatology department once through to them ask them who deals with paediatric arthritis and ask to be put through to them. You'll be seen in children's outpatients but it will be a dr from that department who specialises in children as well as adults. Or it might be depending on size of hospital you might have to get through to childrens' department and ask them who deals with arthritis. At our local hospital it's done the first way but we've been referred to bristol and they have a whole unit in the childrens hospital dedicated to rhuematology.

As for physio they are pretty good but also ask for hydro they should offer this as a tter of course but I have found hydrotherapy to be a god send for Kayleigh especially on bad /flare up days as it takes all the weight off her joints and she can move (depending on how she's feeling) easier.

I found this bookelt a godsend http://www.arthritisresearchuk.org/files/6045_TIM_03-2_14052010143409.pdf especially at first and she didn't know what was going to happen etc. Another one the hospital game me was called "A Day with Sam" I can't seem to get the link for that one but if you google A day with sam booklet it should be the first search result.

If they do give her steroid injections be warned it will be under general anesthetic (meaning she'll be put to sleep) as when they are actually administrating it not only do they have to keep very very still but it can hurt to so it's safer for them to be asleep.

My daughter wasn't put on naproxen but is now on methatrexate (via injection every week) ibuprofen and paracetamol as well as omeprazole, movicol and folic acid the last 3 all due to side effects. I would keep on with physio and get her seen if nothing just to get her in water and be able to move before her muscles start to fade away can't think of the right name. Good luck with everything there are a few of us on here with children of similar ages but we don't always come on everyday so might take a while to get other responses. I'm on facebook or if you want my email just pm me and i'll be happy to chat with you more if you have other uestions. hugs for you to as it's such a burdon especially to begin with while meds are either waiting to kick in or finally get to know what and where is wrong with your child. I won't say it gets easier as such but you learn how to cope with flare ups moods etc we're still in a huge learning curve and it's the schools we're now tackling as they just don't understand fully what she's going through.

clairy

Hi Mandy,

Big hugs to you and your daughter. I'm 22 now and have a JIA since childhood. I was treated at Yorkhill as a child and i have to say the team there were excellent they have a full pediatric rheumatology team which a lot of local hospitals don't.

The steroid injections will reduce the inflammation in your daughters joints and hopefully will get her walking again and make her a bit more comfortable. I would suggest chasing your GP for the referral to try and hurry things along or maybe even give Yorkhill a ring to chase up the appointment.

Any questions ask away.

Big hugs to you and Karys xxx

andylambs

Hi Mandy,

It's awful when your precious child is suffering. But at least you now have a diagnosis.

I totally back up what illihor said and chase up everyone you can for more info.

The Naproxen is a NSAID (non steroidal anti inflammatory), there are many of these, such as over the counter Ibuprofen and Aspirin. If the Naproxen isn't working too well for Karys another NSAID might work better. My daughter was on ibuprofen and then Naproxen then Piroxicam. The Piroxicam was the best for her. Every person is different and you might have to try several before finding the best.

It's also totally fine to use Calpol (paracetamol) if Karys is in lots of pain. Paracetamol and NSAIDs work differently and you won't OD by using paracetamol with one NSAID.

The steroid injections (if they work, unfortunately they don't work for everyone) are like magic. Within 48 hours of her first steroid injection in her knee my daughter was walking and running again - like Karys she had not been walking properly for several weeks beforehand. She was 2 then she's 6 now.

Good luck. And keep asking lots of questions. If you're anything like me you'll NEED to know!

Cheers,
Andy

speedalong

Hi Mandy,

I don't have anything to add, but just to say welcome to the forum. You will find lots of support here. Keep reading and posting.

Speedalong

tracy78

Hi, welcome to the forums.
You'll find lots of help here,I dont post as much as I'd like to but try to get on here if I'm having any worries about my daughters arthur.Often other sufferers are the best place for hints and tips.

I found myself in prettty much the same position as you are now about 18 months ago, it is a very worrying time and can be scary as ,like you said, you feel out of control.
My daughter attends Yorkhill and they have a great team, they've been really helpful/friendly and supportive with us, so hopefully things will start going that way for you asap.
They dont mind if you are having worries or concerns you calling them, as others have said call the Rhuematology dept and ask there.
When Lauryn was first diagnosed I had her nurse on speed dial and I swear the woman thought I was stalking her.

Thankfully we seem to be on a treatment that is working now, it took a long time with many ups and downs, but we are there.

Hopefully by the time you read this you will be all organised and know whats going to be happening. And maybe I'll see you at the clinic sometime.

gentle hugs for Karys, and a big hug for the rest of the family, as it affects them too.

Feel free to ask me anything.

mandy13

Hi Everyone,

Thanks so much for all your replys!

Thank for the info on Yorkhill Tracy its good to speak to someone who uses the same place as we will be!!!!

Ive heard various other kids being treated there for other illnesses and it always gets a good feedback.

Its Wishaw General that we are being referred from i dont know if they are going slow or if this is just how long the process takes, im just kind of waiting just now for more information and whats going to be done and when etc!

I will keep yous all updated!

Thanks again for all the support!!!

Mandy xx

wulstan

Hello,
Sorry to hear about your daughter's condition. Three years old is very young. Ever thought wether immunisation has triggered the JRA?

I started with JRA when I was 3yrs old during a series of vaccinations. The G.P. told my mother not to take me for any more 'boosters' but wouldn't say if they were a factor or not. Either way my immune system was sent haywire and the inflammation tore through me, giving serious damage to many joints, most on the right-side of my body.

flgirl

hello! i too have a little girl that will turn 3 next week and we were just diagnosed with juvile arthritis on monday this week! it is affecting one joint her right knee and they have started Naproxin - im having a hard time getting the liquid naproxin in her....HELP! any suggestions???

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

hellp

illihor

flgirl wrote:

hello! i too have a little girl that will turn 3 next week and we were just diagnosed with juvile arthritis on monday this week! it is affecting one joint her right knee and they have started Naproxin - im having a hard time getting the liquid naproxin in her....HELP! any suggestions???

hellp

have you tried mixing it with juice? I'm luck in that my 4 year takes tablets but she's very good at taking ibuprofen not so good on the injections but we're getting there.

anniesmum

illihor wrote:

flgirl wrote:

hello! i too have a little girl that will turn 3 next week and we were just diagnosed with juvile arthritis on monday this week! it is affecting one joint her right knee and they have started Naproxin - im having a hard time getting the liquid naproxin in her....HELP! any suggestions???

hellp

have you tried mixing it with juice? I'm luck in that my 4 year takes tablets but she's very good at taking ibuprofen not so good on the injections but we're getting there.

Hi there,
My daughter was diagnosed in February aged 5 and she was very determined not to take her meds. It was really very distressing. We tried everything but we ended up having to force it down her - only needed to do this for a short time and it was really upsetting but I knew she couldnt cope without the medicines. This is what the nurses in hospital did and advised me to do. She has now came round and has ended up self administering it. We still use the syringe method but at first we got her to take it by letting her drink something through a straw while squirting the meds in at the same time. Good luck and stay strong for her. L