3.5 year old daughter with JA

baby

Hello,

My 3.5 year old daughter was diagnosed with JIA (Oglioarticular) last April.

It all started with nursery ringing us and asking if she had bumped her knee the day before as it was very swollen - it had been perfectly normal when we'd dropped her off an hour before hand. I said no, and they said they'd keep an eye on it. 45 minutes later they rang again saying we had to pick her up asap as her knee was even bigger and still swelling! Ended up in A&E for 4 hours with them telling us she had bursitis and to give her ibuprofen regularly for 7 days. 7 days later her knee was bigger so we went to the GP who referred us to a doctor at the hospital.

We saw the doctor at the hospital for about 6 weeks I think but he couldn't help us - the swelling wasn't going down at all - so he referred us to Alder Hey. It was during the Easter period so I ended up on the phone every day in tears trying to get her in quickly. The referring doctor was great as he sent further referrals all marked urgent, but the doctor she was being referred to was on holiday, so they switched her to another consultant and we got her in.

They diagnosed her on her first appointment and booked her in the week after for a steroid injection in her right knee. All of her other joints were fine at this time. She was also referred for uveitis scanning. The injection worked and Eithne was back to her normal self - we hadn't realised just how much the swelling had affected her mobility as she never stopped going while it was swollen!

In January of this year, we went for our usually 3 monthly checkup and I noticed on the way that her right knee looked a bit swollen. Sure enough, it was swollen again - just starting to swell - so we were in for more injections - which again worked.

In March Eithne started limping (she told us she hurt her ankle playing at nursery) but she was telling us that both her ankles were hurting and both her knees. We took her to the OOH Dr and they found nothing wrong so we left it as we honestly thought she'd hurt her ankle playing as she's extremely active. On the Tuesday nursery rang us to say they were a bit concerned as she was really limping and would we like to pick her up - so a trip to the GP was sorted and off we went. They found nothing but suggested we contact AH to speak to them. I rang AH and got an emergency appointment for the week after (Eithne was back on continuous ibuprofen to see if it helped) and she was diagnosed with JIA in her left knee and possibly her left ankle. :sad: We were heading off on holiday and couldn't get her in for any injections before we went so they put her on an emergency dose of steroids (prednisolone) for 5 weeks - omg I so never EVER want to go through that again! Eithne is very active and stuff normally, but with the steroids it was a million times worse! They also mentioned that at our next consultant appointments we should discuss permanent medication for Eithne.

Went for the injections on May 9th and Eithne had an injection in her left knee and her left ankle. :sad: We were a bit shell shocked by all of it. I spoke to the doctor and he said the permanent meds would hopefully increase the amount of time between injections, and they are being recommended because of how quickly the JIA has affected other joints and stuff.

So we see the consultant on June 3rd and I'm a bit worried about all of it to be honest. I am thankful that Eithne doesn't seem to be affected by the JIA on a daily basis, only when she has flare ups. With this last one though she asked me why couldn't she run like the other children and that hurt me so much. Whenever she has a flare up she develops this little hop, skip run type movement. She also found it hard to use a trampoline this time (she ended up in tears but it still didn't stop her) and she told us quite a bit that her ankles and knees were sore and she needed to rest. I just worry so much about her.

We are also seeing the eye consultant tomorrow - not looking forward to that because I have to put the drops in her eyes and my husband can't stay home from work to help. Could be an interesting morning!

I didn't mean to make this so long winded but I guess I needed to get it all down somewhere where other people might understand and be able to offer some support/suggestions.

Arianna

dreamdaisy

I cannot help, I am so sorry: I am an aged childless crone of 52 but I can empathise with both you and your daughter: my childhood was wrecked by illness (I remember the struggles my mum went through with things) and as an adult I have arthritis (so I can see Eithne's side of it all). These are tough and demanding times for all of you: arthritis affects everyone in a family, not just the poor one who has it.

The mums do look in here and do post but they are busy, busy people: I am sure one of them will be along at some point and will really have a handle on what you are going through. This is a supportive forum, I hope you have read through some other threads and had that vibe from them. The people on here do know, do understand, but they also get swamped by family matters, as I am sure you understand. You may find ringing the helpline a boon: they know their stuff for us adults and I bet they do for those coping with the younger ones too. They don't mind people crying - just being able to pour it all out may well help you more than you might think. You have a double burden: you want to help and can't, you want to take it all away and can't. This cannot be kissed better It's tough and scary, though your little one sounds like a real fighter! I wish you and Eithne well. DD

baby

Hi - thank you for the reply.

I know all about being busy - I think I'm on the go non-stop from 6:45am until 11pm.

Arianna

anita01

Hi Arianna,

Sorry to hear you are feeling so worried at the moment, My daughter is 8 and has systemic onset JIA, diagnosed 2 yrs ago.It is awful to see them struggle isn't it? and to know what to say when they ask you "why me? ". I am sure the idea of putting her on long term meds is a concern, when she seems ok in between the flares, but if it can prevent or lessen the effect on the joints then I think its worth it. It surprises me that your daughter was quickly diagnosed , but yet to be started on anything other than Ibuprofen,
,It is good that her eyes are being regularly checked tho I know its tough when the drops sting. I hope you got on ok with that this week.

It's tough for the Dads too, My husband tries to come to as many appts as possible , but there are so many, and he feels bad if he can't get there, or back home to look after her siblings.

Have a look on facebook page http://www.facebook.com/home.php?sk=group_12131682883&ap=1, for further support,JAParentsFamiliesUK@groups.facebook.com.

My daughter did not respond to methotrexate and has been on a varying dose of steroids for 2 yrs, she has now got funding for infusions of In fliximab infusions at Gt ormond st. It often takes several tries at medication before one is found to be working for them.

Hope it goes well for you on 6th, let us know how you get on, Anita x

fayrose

I have no experience of this illness in children ...... thank goodness. This is just to offer my support and to say that your little girl must be one brave and tough little cookie to plod on and make so little fuss.

I really hope the various docs make sure they keep on top on this for Eithne and that she continues to be able to cope so bravely and well.

I can only imagine this must be heart breaking for you and her dad and all the family.

My very best wishes and gentle (hugs) for you all. x

baby

anita01 wrote:

Hi Arianna,

Sorry to hear you are feeling so worried at the moment, My daughter is 8 and has systemic onset JIA, diagnosed 2 yrs ago.It is awful to see them struggle isn't it? and to know what to say when they ask you "why me? ". I am sure the idea of putting her on long term meds is a concern, when she seems ok in between the flares, but if it can prevent or lessen the effect on the joints then I think its worth it. It surprises me that your daughter was quickly diagnosed , but yet to be started on anything other than Ibuprofen,
,It is good that her eyes are being regularly checked tho I know its tough when the drops sting. I hope you got on ok with that this week.

It's tough for the Dads too, My husband tries to come to as many appts as possible , but there are so many, and he feels bad if he can't get there, or back home to look after her siblings.

Have a look on facebook page http://www.facebook.com/home.php?sk=group_12131682883&ap=1, for further support,JAParentsFamiliesUK@groups.facebook.com.

My daughter did not respond to methotrexate and has been on a varying dose of steroids for 2 yrs, she has now got funding for infusions of In fliximab infusions at Gt ormond st. It often takes several tries at medication before one is found to be working for them.

Hope it goes well for you on 6th, let us know how you get on, Anita x

Hi Anita,

I think they have kept her on ibuprofen when needed, because for 9 months she had no flare ups and it doesn't bother her on a daily bases - only when she has flare ups, but now they are happening more often they want to head it off before it bothers her regularly. She's an extremely active little girl and always on the go and the only time she slows down, is when she's having a flare up.

It didn't go so well yesterday putting the drops in. It hurt Eithne quite a bit so she refused to let me put the drops in her right eye. I wrestled her to the ground, sat on her, pinned her down, she was crying, I was crying. She was crying so much she threw up a lot, it was horrific. We were late getting to the appointment (I rang them as we were pulling out of the drive) and I broke down when the secretary asked if I was okay. :sad: The nurses were brilliant and said that next time ask for the staff there to put the drops in as they are used to all sorts of behaviour and know all sorts of tricks and that. The doctor was extremely unsympathetic and said "Well Eithne must be afraid of hospitals as no other parent has had a hard time." I said she wasn't afraid of hospitals and in fact loved going to them! I was still pretty shaken up last night by all of it.

I'm not sure yet what medication they are thinking of putting her on, but I will post an update after her appointment on the 6th.

We're a bit worried that her right knee is looking a bit swollen now, but we're hoping we're wrong.

Thank you so much for the reply! I truly hope your daughter is doing okay on the medication.

Arianna

baby

fayrose wrote:

I have no experience of this illness in children ...... thank goodness. This is just to offer my support and to say that your little girl must be one brave and tough little cookie to plod on and make so little fuss.

I really hope the various docs make sure they keep on top on this for Eithne and that she continues to be able to cope so bravely and well.

I can only imagine this must be heart breaking for you and her dad and all the family.

My very best wishes and gentle (hugs) for you all. x

Thank you for the reply!

Eithne is very tough and brave (in some cases) and has surprised all of us by the fact that she is so active and just goes and goes and doesn't stop. The flare ups only seem to slow her down - not stop her completely.

I'm hoping she doesn't start to become afraid of the doctor's and hospitals with all of the appointments she has. So far she seems to love going to see her doctor's.

Arianna

lisa

hi ,really sorry to hear about your daughter
my son who is 13 was diagnosed with jia 3 yrs ago and it gave us the shock of our lives he had rarely ever been ill then everything happened all at once ,we never knew kids could get it and we was dreading the future .our doc was great and got him seen straight awayhe spent 6 weeks in hospital till he could be mobile ane started methotrexate weekly injections which i give him i was terrified in the begining but use to it now things have improved even though it took a yr to get more in control of it he is back playing football even though he has alot of joint damge but his body has adjusted i still worry every day but that what mums are for you need to make sure you ask any question you want no matter how daft it sounds and take each day as it comes when all her meds are sorted you will feel a lot better.my 5yr old daughter is starting the same process her knees and spine are affecting her so i cant belive we are going through it again but hey thats life you just have to stay strong and be positive and share our worries i bottled it all up last time and it only made it worse iwish your family all the luk take care x