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My 18mo baby just diagnosed with JIA

trish123trish123 Posts: 14
edited 13. Nov 2015, 20:19 in My Child Has Arthritis
Hi there - I'm new to this site so please bear with me.

My 18 month old daughter has just been diagnosed with JIA in her left knee. Symptoms started about 2 months ago after a series of colds and she can now barely walk at times. Her knee is now permanently bent and limps and leans forwards whenever she tries to walk.

My husband also has RA which started as JIA and he is upset that he has passed it on to her. He has dealt with it all his life and was in and out of hospital as a little boy (I understand JIA is more widely accepted by doctors these days) and so, even though he feels guilty he is more accepting of what may or may not happen to her.

I, on the hand, feel sick everything I think about what might happen to her! Is this a normal reaction for other mums on here or am I going crazy?!x

Comments

  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    Of course this is a normal reaction, trish123. How awful for all three of you! I expect you're still in shock.

    I'm not a parent of a child with arthritis but I have had RA since I was 15 and I'm a mother and grandmother. I can empathise with your feelings, as all of us parents would much rather undergo such things ourselves than have to watch our children undergoing them. Do remember that treatments advance all the time and are better now than they would have been even in your husband's early years of arthritis. Has your daughter been started on any meds yet?

    I do hope some of our parents will be around soon. They are, as you might expect, busy people so not on here as much as us oldies but you will find them very kind and understanding.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    Thanks for replying. She her her first appointment at clinic next Friday so I don't really know what to expect. My husband spent years of his childhood in hospital with his RA and I'm worried that she will have to undergo similar. I guess the biggest different is that they didn't really know about RA/JIA in children when he was a little boy and so he was constantly misdiagnosed.

    I'm feeling a little better today, I think it was just catching up with me yesterday - delayed reaction or something.

    I would love to hear from other mums who have toddlers/children with JIA and how it has affected them and how they have coped. I also have OA in my hips (unknown displastic hips don't like pregnancy - and I've had two lots of surgery in the past 8 months alone!) - I find it incredibly painful to carry my little girl when she's having a bad day.x
  • LdyalbLdyalb Posts: 85
    edited 30. Nov -1, 00:00
    Not a Mum but I do have suspected PA. Am 23. My parents are gutted. They both have OA (Dad is 72, Mum 51 but she's had OA since her 20s). Mum and her Mum were both diagnosed with Rheumatism and Fibrositis at 14 and 17 respectively. Those are both now known as Fibromyalgia which I was diagnosed with at 22, had on/off symptoms since I was 15 though. Mum and Dad both have HMS mildly which I also have, although mine is worse than both of theirs.

    Your husband should feel no guilt (easier said than done I know), Mum doesn't have any issues with her Mum who also has Fibro and HMS and OA. I don't feel annoyed that I've got loads of her and dad's 'bad bits' - I'd much rather be their child, than the healthier child of someone awful like Baby P's Mum. Honestly I'm sure your little one won't be annoyed about it. You're both her parents and that's the gift we give our children - being loving parents.

    The fact that you both feel upset right now is understandable and proves you both love your DD very much.

    Wrt carrying issues you could try looking at disabled parents sites, they often have equipment which can help with various issues like that. You might find some good tips on there.

    Take care of yourself, give yourself time to feel sad and good luck for you and your DD x
  • andylambandylamb Posts: 41
    edited 30. Nov -1, 00:00
    Hi,

    My daughter is now 8. She was diagnosed with JIA in her knee and one finger joint when she was 2, so a bit older than your daughter. She had a general anaesthetic and steroid injections in those two joints and she was back to normal in 48 hours. She stayed well for a few months. Keep your fingers crossed that the arthritis stays in just that knee or at least no more than 4 joints and she has a great chance of full recovery and low recurrence rates.

    Push hard for her to have treatment ASAP. The steroid injections, though traumatic for the parents as a general anaesthetic is needed, are totally wonderful and your daughter will be probably be pain free within 12 hours. The more days she goes not being able to straighten that knee the greater the likelihood of permanent joint damage. And even without joint damage she'll need physiotherapy to get her walking properly again. My daughter couldn't walk down stairs properly for years as she missed a crucial development stage while her knee was locked.

    It's totally normal to be utterly shell shocked when you first find out. I remember it like yesterday. I hope this is it for you, and she has this one bout and it's all over. If that doesn't happen there are quite a few of us who pop in here that you can talk to. Most of us have stories that you hopefully won't have to go through.

    Best of luck to you all,
    Andy
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    Thanks so much Lydyalb and Andylamb. It's good to hear from you with your advice. I'm feeling much more postive today and will try to stay that way. I think the shock finally caught up with my yesterday!

    Lydyalb - the positivity from you is over-whelming. It must be quite difficult for you and your parents at times but you've made me realise that we still have a blessing in having a beautiful daughter and she will always feel loved and supported.

    She is currently just on paracetomal and ibuprofen until she goes to clinic next week. The good news is that she actually walked almost normally today - still very wobbly and fell over a few times but she actually put one foot in front of the other although still at an odd angle but she is definitely showing some signs of improvement.

    Andylamb - would you still recommend the steriod injections even if the painkillers and ibuprofen are starting to help? May be I'm getting ahead of myself a little - she's had good days before and I've thought 'oh great' and then she goes downhill again so I guess I'll just have to hang on.
    x
  • PegsboardPegsboard Posts: 29
    edited 30. Nov -1, 00:00
    Hi sorry I've only just seen this been a bit busy. My 3 year old daughter was diagnosed with JIA in her knees hip and elbows in February although she's had it for as long as we can remember.
    She takes it all in her stride, even on her bad days we can't keep her still!! Or quiet for that matter!!
    She started nursery this week and is tiny compared to her 40 class mates but she holds her own and loves it.
    Feeling sick with worry is totally normal It's so scary thinking what if??
    You sound like you all have enough on your plates without the added worry of your baby being ill too.
    Definitely go for steroid injections they work wonders. Grace couldn't run before she had them but they've given her more range of movement and she has trotted this week for the first time.
    Methotrexate the next step for us.

    Hope I've been some help!
    Zoe
  • edited 30. Nov -1, 00:00
    Hi all!

    I am new to the forum today and have two children of my own - now 12 and 10. They both have food allergy issues and I too have a wheat allergy - which gives me arthritis (mostly in back and rib cage) when I eat any at all.

    You must be under a great deal of stress to have such young children with arthritis.

    Just a polite question to you - When you went to doctors / specialist has anyone ever mentioned diet changes?

    What did they advise and what have you tried?

    Regards, Sean
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    Her first session at clinic is Friday so I will definitely ask about diets then. My husband has suffered with RA since he was 6 and he said that his diet hasn't affected him.

    I'll be honest - I've never heard of a food/wheat allergy causing arthritis. The JIA my daughter is suffering with is an auto-immune disease which (from what I understand) is that her own antibodies that are supposed to fight the bad germs actually turn on her own body and attack different joints.

    I also have osteo arthritis in my hip and lower spine but that is from having undiagnosed hip displacia and going through pregnancy with the doctors almost suggesting I was making up the pain so I have good and the odd bad day too. x
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    Thanks also Zoe for your uplifting and positive message. It gives me some hope that my daughter will be able to live a full and healthy life.x
  • andylambandylamb Posts: 41
    edited 30. Nov -1, 00:00
    If the painkillers and ibuprofen are actually controlling the disease and she's back to normal then you won't need the injections. I really hope that's what happens, you'll have had scary near miss.

    Good luck, let us know what happens.

    Andy

    On the wheat intolerance thing, you can have a blood test to see if wheat is the cause. In my daughter's case wheat has naff all to do with it.
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    She's not back to normal - still walking very robotic like and falling over a lot but she is putting one foot in front of the other so that is some promising news. The consultant mentioned the possiblity of having a leg splint - really don't know what that involves at the moment so I'll find out at the end of this week.

    Thank you so much guys - you've really helped me feel more optomistic and positive about the whole situation.

    I'll let you know how we get on this Thursday at physio and Friday at the Clinic.
    x
  • dreamdaisydreamdaisy Posts: 31,542 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello trish123, I was away last week (and am now trying to catch up with everyone since I returned) so please accept my apologies for a late reply to your very poignant thread.

    I am so sorry to read of your daughter's (and husband's) difficulties with this malarkey. I too was a poorly child (thanks to foul eczema and severe asthma) so I remember well what it's like. I knew I was 'different' as a child when it came to health but as it was all I knew I wasn't that bothered by it. I did not comprehend the impact of it all on my parents, my mum in particular - all I knew was that she was there no matter what time of day or night, trying her best to help. (This was back in the early sixites when very little was known about such matters and dads weren't that hands-on.) Mums are usually a great source of strength, support and love: you are that without a doubt and at least your husband has an idea about what all of this entails. Of course you are fearful for your lovely girl's future, and rightly so, but the understanding and treatment of this has progressed in the past few years and I am sure she will be given all the medical help she needs. I hope the apppointments tomorrow and Friday go well - please let us know, yes? I wish you all well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • iluvhobbitsiluvhobbits Posts: 40
    edited 30. Nov -1, 00:00
    Hi Trish,
    My daughter was diagnosed with JIA at 15 months old in her ankles, she is now 14. As a toddler she was very reluctant to walk very far and walked with a limp so the pushchair came in very handy.Initially her arthritis was controlled just by taking ibuprofen and lasted about 18 months she then came off medication and appeared to be disease free. It wasn't until she was 7 years old (in year 3 at school) that she had her next 'flare' this time effecting both knees and both ankles, steroid injections were done under a general anaesthetic which gave amazingly quick results and she was put back on NSAID's. She has had further steroid injections over the past few years all with great results and is now prescribed Methotrexate by injection once a week which is currently keeping her symptom free.
    I know it is very difficult having a toddler with JIA as they seem so tiny and helpless and they can't really tell you how they are feeling and what hurts but please be assured things do get better. If you are offered steroid injections I would highly recommend agreeing to have them done as they work so quickly and make such a difference.
    I hope you and your daughter get the help and support you need.
    Best Wishes
    Sandra
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    So, we had physio last Thursday, the physio asked me to encourage her to use her bad leg more and gave me some exercises for her. Have been trying to do them and can make most of them in to a game so hopefully we're doing some good.

    Saw the Rheumatoid Specialist on Friday and he took one look at her and found swelling in her left knee and also her left ankle. He thinks it is Oglio-Articular JIA which in the grand scheme of things is probably the best one to have. We're having the steroid injections this coming Friday under general anaesthetic. I've taken all your advice and I'm looking forward to the injections in the hope that they will work for her and she will be pain and inflammation free for at least the immediate future.

    Thank you so much to everyone for their very helpful and positive comments. Two weeks ago, I thought my world had just ended and that that my baby would have a lifetime of disabilities but now I know, that this can be managed and more often than not, the children can lead a relatively normal life.
    x
  • dreamdaisydreamdaisy Posts: 31,542 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello again, it's lovely to hear from you once more and with better news. I hope that the injections help your little one and that she is able to get some much-needed relief from the arthritis. It is so tough on the mums and dads of the little ones but the babes tend to go with the flow - they are reslilient little things! Please let us know how she gets on and my thoughts will be with you all on Friday. Take care and remember we're here whenever needed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • PegsboardPegsboard Posts: 29
    edited 30. Nov -1, 00:00
    Glad you feel more positive, dont be suprised if they inject more joints while she's under general anaesthetic. They did with Grace because they felt she had lack of movement in other places. Also they may need to repeat injections in any stubborn areas. Ha get me I sound like a consultant!!
    Please make sure that she gets her eyes tested for uveitis too, the docs at my local hospital failed to refer Grace so she's a month late with her screening! Cross mummy alert! Main rheumatology department have been fantastic tho.
    Take care.
    Zoe
  • laylamumlaylamum Posts: 1
    edited 30. Nov -1, 00:00
    i just come back home from hospital 2 days ago, my baby girl was diagnosed with JIA my i felt like my world has gone pitch black and im still cant find any light.i just dont know where to start, i thoght that i am so alone but i just found this sit and i have some hope for my baby girl to be free from JIA
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    You must feel devastated, laylamum. I don't have a child with arthritis - thankfully, my sons are both fit and healthy despite my own R.A., but I know how I would have felt if either of them had been diagnosed with arthritis.

    Right now you will be in shock but I very much hope things will improve for your little one as they have for many others on here. Meanwhile, we are all here to try to help you through this. Have you thought of having a chat with someone from the Helplines?

    I think if you were to post this as a separate topic more parents would be likely to notice it. They are very supportive.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    Hi All

    Just a quick update on my little girl. She is of course coming up 21 months now (diagnosed at 18 months), unfortunately she has 3 joints now affected (left knee and ankle and right wrist). The steroid injections were absolutely fantastic and I could see huge improvement within 24 hours. However, she is still really slow walking and I mentioned to the consultant about 2 months ago that I felt something wasn't right with her right hip. Saw him last week for steroid injection in her wrist and he examined her hips and said they were fine but as I was still worried he would arrange for an urgent ultrasound scan. The scan has shown fluid on her hip and we see the consultant again this Friday. Has anyone else experienced any 'fluid' problems? I don't know whether it's related to the JIA or we're looking at something completely different.

    Apart from that she is doing brilliantly considering. It can be quite difficult some days when she can barely put one foot in front of the other but then other days like today she's been dancing around (obviously only little steps dancing but still - it's better than nothing!) like she hasn't a care in the world.

    Thank you so much for everyone who gave advice or words of support - on bad days I often look through this thread to remind myself that we're not alone.x
  • trish123trish123 Posts: 14
    edited 30. Nov -1, 00:00
    Laylamum - so sorry just seen your message. He old is your baby and have they diagnosed what type of JIA it is. Some are easier to control than others. I would highly recommend the steroid injections if offered. I was distraught the first time she had them but I'm not so bad now because I know the effect they have are nothing short of miraculous and she doesn't really know anything about it because they give her a little gas and she's fast asleep.

    Please, please respond and let us know how you're getting on, you are not alone. I didn't think I would cope but here I am a few months later trying to give you some advice!x
  • Jodie0626Jodie0626 Posts: 3
    edited 30. Nov -1, 00:00
    My daughter (just2) was diagnosed with jia earlier this year. She has it in her toes ankles knee elbow wrists fingers and neck..... :cry:
    She is currently on methotrexate but seems to be really struggling at the moment. Very stressed seems in pain (cradles her hands a lot) she wakes all through the night and pulls at her legs. I don't think it helps that she isn't talking yet as the frustration obvious. I do give ibuprofen and Calpol. Was just wondering if anybody has any other ideas/suggestions? I have a 6 year old son who is fantastic but I feel has taken very much a back seat as Alice demands so much of my time. It's hard to get anything done as she just wants to be help all the time. It's so hard to see as she is normally such a Bubbly child.
    I look forward to hearing back
  • moderatormoderator Posts: 4,093 mod
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums Jodie0626 from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Mod JK
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