My daughter has JIA

neilhosier

My daughter is 21 months old now and she was diagnosed with JIA about November time, she initially went into hospital the start of August, one night, there was a loud thud in the nursery and Emily started crying, when I got into the room, she had managed to climb out of her cot and fell about a meter onto the floor, she was trying to climb out to play with the cat! So anyway her knee swelled up and she went from attempting to walk to not really moving at all and when she crawled she would crawl with her knee at a funny angle, just what was more comfortable for her I guess.
After about 2 to 3 months we ended up at the Nuffield in Oxford, at this point Emily has already had a steroid injection in her knee, after an operation where we hoped they would just trim the miniscus and all will be well, so we walk in to see the consultant and his first words are 'so your here to see me about your daughter's arthritis' bloody hell, are we! My wife and I were shocked to say the least, at first I guess it was relief, we finally know what's wrong and they can start treating Emily, she might actually be able to walk, which in the back of both our minds, although my wife and I never said anything to each other, we were both thinking, she could never walk. This is just the start though, now just over a month later, Emily is on prednisolone, I have given her 4 injections of methotrexate, the latest one was this morning and she is up and walking, a bit awkwardly I must admit and only when someone is there to hold her hand, as she hasn't the confidence to do it alone, but still now I find myself thinking, will she get over this condition, will she spend some of her life in a wheelchair, how long does the methotrexate take and is it a miracle drug, just what does the future hold? So apart from telling my story, which has helped me get a bit off my chest I must admit while I lye here in bed, I would love to hear from other parents on their experiences and how their children are doing?
Finally, I have to say through all of this, Emily is a real character, she has never been bothered by this whole condition, she has her injections and cries for about 30 seconds and then just gets on with it, and she cracks me up at least once a day! If only I could be more like her.

andylamb

Hi Neil,

Welcome to the boards. We've all been where you are right now. Keeping positive and doing lots of research is how most of us got through it. Methotrexate takes a long time to work. It was explained to me that you have to load the system with it, it can take up to 12 weeks or longer to have an effect. When you come off it it takes just as long to clear the system. They'll probably stop the steriods if they can get the MTX working. At least we never used prednisone or predisolone long term.

My own daughter had her first symptoms at 2 and a bit, she's now 8. Other than experts looking closely no-one would know there was ever anything wrong with her. She's on a weekly injection on Entanercept but we're even hoping to wean her off that gradually. Methotrexate never worked for her.

JIA is a disease that comes and goes. No two people seem to react the same way to the disease or to the medication. There is definitely hope for you. There are now so many drug choices and more are being developed. It might take a while to find the right combination for your daughter (it took 4 years to get my daughter into remission) but it is possible.

Have they said it it's oligoarticular (old name = pauciarticular), polyarticular, systemic or something else? The long term outcome for any child is very much based on the type of arthritis. If Emily's was caused by an initial injury then I guess it could even be reactive arthritis and that can go away completely in time. It would appear that the children who have oligoarticular arthritis (less than 4 joints involved) have a much greater chance of long term remission. Are Emily's hands involved at all? There's a study out on t'internet that suggests if the fingers are involved in the first 6 months then the long term outlook is not as good as a straight oligoarticular child.

But even if the outlook isn't fantastic, the drugs are! My daughter, who at one point couldn't/wouldn't walk, choose her school clubs today. She's joining the hockey, running and netball clubs :-)

We're generally willing to answer any questions - though we're not always regular so it might take a while for replies.

Good luck to you and the whole family.

Cheers,
Andy

stickywicket

Hello neilhosier. Although my own children are long since grown up, I just wanted to welcome you to the forum and tell you to hang on in there if no parents answer immediately. As you'll appreciate, parents of young children, especially of young children with arthritis, tend to be busy people and not around here as much as the rest of us.

I think you are coping magnificently with such a devastating situation which must have come as an incredible shock.

As for the meds you mention - I expect the pred injections are to tide Emily over until the meth takes hold. This usually takes some weeks. Is it a miracle drug? I guess that depends what you mean by miracle. It's a disease modifier. My own brand of arthritis is officially Stills disease but I tell people it's RA as saying you have a juvenile form of RA sounds ridiculous when you're 65 but I have had it 50 years. There were no DMARDS then so mine took hold. If I'd been on meth from the start, as Emily is, it would have been a different story. Even so, I've had a good life - degree, marriage, children and now grandchildren. I do use a wheelchair these days but only for long walks etc.

Emily sounds to be a wonderful little girl. I wish you all the best of luck in dealing with things and I hope some other parents arrive soon.

(Ah I see they have arrived already. Good.)

neilhosier

Thanks for the quick responses people, I should've said, they initially diagnosed Emily with oligoarticular arthritis, as it was in her knee and both ankles, since then the consultant has said it's polyarticular, as it's in both knees, both ankles and the smaller parts of her ankles/feet, can the arthritis spread?
Thanks for the help and support, were off to swimming now, Emily loves swimming and it gets her up and walking on a little wall they have in the pool.

andylamb

Hi Neil,

Arthritis doesn't spread exactly. But once it's appeared it can pop up in any joint. My daughter started in her knees closely followed by fingers. After treating that for a while it cropped up in more finger joints.

In the last 6 years she's had it in hands, fingers, wrists, elbows, knees, hips and jaw. Touch wood, it's never (yet) appeared lower than her knees or in ribs, spine or shoulders.

In my experience once you've got rid of it in one joint it might come back in the same joint later on or it might stay away from there for a while and pop up somewhere else.

I don't know another disease like it. It really does affect everyone differently. So what happened with us could be entirely different for Emily. Hopefully some other parents will check in soon and give you some other perspectives too.

If the MTX isn't controlling it they'll look at moving Emily onto a biologic DMARD. We were living in the USA when my daughter was initially diagnosed. Our rheumatologist there explained that there goal was to control the disease as much as they can to allow the joints to grow as naturally as possible and to limit permanent bone damage as much as they can. This is why they prescribe heavy weight drugs such as MTX quite quickly as every day with symptoms holds the possibility of permanent joint damage.

Hope you enjoyed the swimming. It's one of the best possible exercises for arthritis. Are you seeing a physio or other therapist to keep Emily's joints moving?

Good luck,
Andy

neilhosier

Thanks Andy, I guess that's one of the worst things with JIA, the fear of the unknown, every parent wants a definitive answer and no matter how good a specialist you see, or however many people who've had experiences you talk too, no one can give you that.
Emily is having physio once a week at the moment in oxford, where they take her in a hydro therapy pool.

iluvhobbits

Hi Neil,
Sorry to hear about your daughter I know how difficult it can be coming to terms with a young child having this condition. I'm glad to see you have had several replies already which I hope have helped.
My daughter Tara is now 13 years old and was diagnosed with JIA when she was just over a year old, both her knees and both ankles have been effected at different times over the last 12 years.
In our experience Arthritis is definitely a disease that comes and goes, Tara has had periods when she has been off medication and completely normal and then the disease has flared up again.
Over the years Tara has had several steroid injections directly into the joints and has been on several different NSAID , currently she is prescribed Methotrexate by injection once a week which seems to be keeping her Arthritis under control at the moment (thank goodness).
Try to let your daughter participate in all the usual activities that children of her age get up to, you might find if she has a busy and active day she will need a restful day the day after but letting her join in with her friends and family and 'be normal' means so much to them at any age.
Encourage her to go swimming as much as possible as this is the best possible exercise for her. Tara still goes swimming once a week which she loves, swimming about 60 lengths every lesson, she loves PE at school and has just selected her options choosing to do GCSE PE as one of them so she doesn't let her arthritis hold her back. The schools she has attended have all been aware of her condition and have always been very caring and supportive to her needs.
Try and make the most of the good days and don't wrap her up in cotton wool, she won't break!
If I can be of any help or you have any questions please feel free to ask, I wish I had discovered this forum when Tara was first diagnosed, its just reassuring knowing that you are not alone.
Have a look at the CCAA (Children's Chronic Arthritis Association) website too for more helpful advice.
Best Wishes
Sandra

joeliz

Hello.
I have a younger brother who suffers from juvenile arthritis and looking for information I found a website where there is enough information about the disease and a number of tips to help you live better with arthritis.
There are tips on diet, exercise, alternative therapies, and so on.
I leave the link if anyone is served.
[Link deleted]

Hope you find it useful.
regards

Post edited by a Moderator as it contained a Link to a commercial site (Breach of House Rules).IA

Emmawaters

Hi, firstly I would just like to say how sorry I am at the diagnosis of your daughter and secondly I know exactly how u feel. My daughter was diagnosed with polyarticular arthritis at 22 months and it was a complete shock for me and the rest of the family. I couldn't quite take it in at first and just felt numb, obv over a matter of days it sank in and really hit home and was completely devastated. It started in two of her fingers and one wrist but quickly went onto her knee, ankle and neck. She had steroid injection in all of her affected joints but cause it was in her neck it was decided that she should go onto methatrexate, which at first I really didn't want her to. Well the methatrexate took a while before we saw any improvement but after about 12 to 14 weeks we saw great improvement. She was happy again, had more energy, could actually walk short distances and her appetite increased (which was good, as she'd lost quite bit of weight and was quite skinny and frail for a time) she was on methatrexate for 10 months when for some reason was making her really sick and poorly so we took her of it (as advised by her consultant) and it's been 6 weeks now and I'm really sad to say that she's been getting more stiff and in pain this last 10 days or so, off her food and more lethargic. Seems to be affecting her knees and ankles now so looks like our only other option is to start weekly methatrexate by injection rather than orally. Can I just let u know how important it is to take your little girl for regular eye checks as we have also discovered that Miya has euvitis in her right eye and is now on steroid drops. Kids are such a worry anyway but when their diagnosed with such a devastating illness like arthritis it just makes things even harder and it's so sad that children have to suffer. I wish your little girl all the happiness in the world and as hard as it is for us parents, we will get through it and be strong for them because we love them so. Goodluck and I hope my story has helped you.

Pegsboard

Hi. My 3 year old daughter has olioarticular arthritis. We got the diagnosis in February after over 18 months of tests etc. We think She's had it a long time as she struggled to hit her physical milestones eg. sitting unaided, crawling and walking. It wasn't until she fractured her skull at 20 months and the A&E doc showed concern that she couldn't walk that we realised she wasn't as advanced as her brother and sister had been.
Any how she's had 1 round of steroid injections and is due for her next round in April and will start on methotrexate injections in the next week or so.
I'm in a daze at the mo and can't get my head round how aggressive the meds are but she is taking it all in her stride! Loves going to the hospital and to physio, never moans at the blood tests and is quite the entertainer wherever we go!
I just wanted to say hi and wish your family well.
Zoe