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4 year old son with suspected sJIA

GmummyGmummy Posts: 8
edited 18. Dec 2012, 14:18 in My Child Has Arthritis
Hi everyone
some people on another forum recommended that I come here and post - so here I am.

My son is 4 and due to start school in September... in Easter this year he had chicken pox (his younger sister had it 2 weeks before). We were abroad when it happened but he recovered. All was well. Then in early May, he came down with a high temperature and had achy joints - then a rash appeared. This went on daily for 6 weeks. In between all that time, GPs and hospitals diagnosed post-viral infection and HSP.

Finally got referred to GOSH rhuematology team and they think it's sJIA - although they've not really confirmed it. We stayed for 12 days whilst they did bone marrow aspiration to rule out lymphomas, heart echos, ultrasounds of his joints (no swelling found, nothing dodgy found), spleen/liver scans - slightly enlarged.For 12 days he didn't really have a temperature - he was on naproxen though.

Edited - his ESR and CRP are elevated and so was his ALT (up to about 300?!!).

we got sent away to take 6 weeks of prednisolone - 15mg for 2 weeks, then 10 for 2 weeks, then 5. He was doing very well - no aches, no fever, no rash. till the last couple of days of week 6 when he suddenly had a fever spike and a tiny bit of rash. He also had an achy ankle. With the meds, his ESR and CRP were coming down nicely, and his ALT is back to normal-ish.

Rang GOSH who said to continue with the 5mg of pred - and they are due to see us in under 2 weeks anyway.

His temp is still up every evening, not much rash (although last night had more than the last few nights...) and achy joints.

It sounds like sJIA doesn't it??? :cry:
I'm freaking out now - will I have my active little baby back??!?! could it be some sort of dodgy post viral infection that's just hanging about?!! what's the prognosis??!

help...

Comments

  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh dear, gmummy! We're not docs and can't do diagnoses but I would love to be able to diagnose something minor and transient for you. As it is, all I can say is that your little fellow sounds to be in very good, capable hands and it sounds like they are doing every test possible to ensure they get the right result.

    Prednisolone does work like a dream for many of us with an auto-immune brand of arthritis. (I'm not the parent of a child with arthritis but I've had it myself for over 50 years.) It also works for other things too, though, so that, in itself, is no indication.

    I know there is something called Reactive Arthritis which can follow from a viral or bacterial infection and which usually goes away eventually. I guess it's a possibility but, with all the tests your docs have done, I'd back their final decision.

    As a mother and grandmother, my heart goes out to you. You just have to take each day as it comes right now. (So easy to say: so hard to do.) You will, hopefully, know the score in two weeks time. I very much hope it isn't JIA but, if it is, we will always be here to support you. (())
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • GmummyGmummy Posts: 8
    edited 30. Nov -1, 00:00
    thank you for your kind words. It's so difficult. Last night he had such a high temperature (39.7 at one point) and he was restless. He insisted on going to football though so I took the morning off and brought him. He tried his hardest but he was quite easily tired out. I felt so bad. I've spoken to friends of friends who happen to be rheumatologists (but practising in different country) and they've said that the most important thing is to get it into remission or under control... So I guess that's the next step - doesn't really matter what it is I suppose, as long as the fever, joint aches are gone and banished forever!!!
  • Chelle123Chelle123 Posts: 23
    edited 30. Nov -1, 00:00
    Hi gmummy,
    So sorry to hear that your little boy has been so poorly. My 14 year old son was diagnosed with systemic JIA in May this year. He had the same symptoms as your little boy. It was so difficult seeing him deteriorate so rapidly and become so poorly and then have weeks and weeks of tests and treatments with antibiotics before they could confirm diagnosis.

    It has been the most difficult 3 months of my life and a rollercoaster of emotions.

    Once diagnosed he was put on 15mg of steroids, strong anti inflamatories and methotrexate injections once a week. It has taken about two months to see the imporvement but he is now getting stronger every week and we are hoping that he can return to football by September. It is difficult to see at the time how things will get better but I can honestly say they will.

    Perhaps the consultant will increase the steroids again and give stronger anit inflamatories. This is the only way we control my sons symptoms at the moment.
    If your son is still having symptoms then they have not got his medication right yet.
    Wishing you all the luck in the world
    Chelle
  • Soretoe2Soretoe2 Posts: 198
    edited 30. Nov -1, 00:00
    Hi Gmummy, My heart goes out to you and your lttle one.
    If he is diagnosed please don't think that's the end of his active life. I had Still's (now JIA) as a three year old after contracting rheumatic fever.
    It was in the bad old days as I'm now a granny of 5 nearly 6.
    My prognosis wasn't very promising, yet I have managed to have a near normal life, as lots of people do. I have had lots of treatment and surgeries over the years that have enabled me to live a near full life.
    The trick is never to give in and keep thinking positive. There are some really good treatments out there these days and lots of help and advice from all sorts of quarters. Your little boy will improve.
    I pray that this is just a bad virus or something and it is not JIA for you and your family and send you blessings for good outcome.
  • GmummyGmummy Posts: 8
    edited 30. Nov -1, 00:00
    Thank you so much for your encouraging words.

    We see our consultant next Friday so I'll report back. Fingers crossed for whatever reason, he didn't have a temperature or rash or joint pain yesterday. After about a week of it last week. Nothing changed in terms of meds. I just don't know what's going on.

    Many thanks again.
  • Soretoe2Soretoe2 Posts: 198
    edited 30. Nov -1, 00:00
    Hi Gmummy, just thinking of you as I know tomorrow's the day you see the consultant. Good luck and am praying that the news is good for you and your little boy.
  • GmummyGmummy Posts: 8
    edited 30. Nov -1, 00:00
    Thank you for remembering! Well the latest blood results have lowered CRP, alightly elevated ESR. Lowered alt, lowered ferritin. And hb that is slightly low but normal for him.

    He's not had a temp since my last post and his rash is minimal. We went swimming twice in two days and he's full of beans. Still on 5mg pred.

    No idea what's going on!
    Xx
  • Soretoe2Soretoe2 Posts: 198
    edited 30. Nov -1, 00:00
    Hi Gmummy, I know you are probably having a week-end of, it's glorious sunshine all round for a change.. Just wanted to say 'how did it go' with the consultant.
    Take care, thinking of you both and hoping the news was so good you don't need to post any more.
    My newest little grandson smiled at me today for the first time... hope you are smiling too.
  • GmummyGmummy Posts: 8
    edited 30. Nov -1, 00:00
    hello everyone
    sorry haven't updated - I was off for 2 weeks and posting on phone isn't that easy!

    So we had our review at GOSH about 10 days ago and they said to up his steriods to 10mg pred (he was originally on 15, then reduced to 10 and 5 after every 2 weeks) as his rash came back, v mildly but came back. They also wanted an ultrasound on his ankles because the consultant felt them to be slightly swollen - but by the time we went down to ultrasound they were shut (because we weren't seen by consultant till an hour later etcetc).

    Brought the ultrasound request back to my local hospital and we've got an appointment!! at the end of Sept (ridiculous).

    but, I'm not too worried because having had about 10 days of 10mg now, he's really full of beans, not tired, went swimming yesterday, went for long walks over bank holiday... eating pretty well.

    they want to drop the 10mg to 7.5mg this friday (after 2 weeks)... I'm nervous about that, but hopeful that this is all going the right direction!!

    oh and his last blood tests last week were near normal! yay, the ESR/CRP were normal, HB went back to normal levels, his ALT was much lower.... all good. I'm not going to count my chickens before they hatch but I'm so hopeful now...

    how is everyone?!

    xx
  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    There's no need to apologise, Gmummy. I'm just glad you've all had a bit of respite and managed a good holiday. Pred is, for many of us, a real miracle drug and although it's not a permanent solution, it does help all round if life can return to something like normality and sometimes it can just give the body the kick-start it needs.

    I know you have 'rheumatology friends' who will be able to advise far better than we can. I just hope the ultrasound goes well and also the pred reduction.

    Thanks for the update. Good news is always welcome :)
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I concur entirely with Sticky's sentiments. That is good news, pred is a 'wonder' drug but it's fine to take over a short period of time. I'm glad you had some time away and it won't be long before the ultrasound comes around. Take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • GmummyGmummy Posts: 8
    edited 30. Nov -1, 00:00
    Hi everyone
    His rash is back. I'm so depressed. We dropped his pred to 7.5 last Friday and he was doing v well. Tonight at bath time I noticed it was back. Not as crazy as when we started but it's back and not mild.

    He had his blood test today so will wait for results tomorrow and ring GOSH to see what they say. He was perfect on 10. Maybe he should stick to 10 for a whole month? I don't know. On 10 he was all well.

    How long is long to be on steroids? and how much is too much? He is 17.5 kg. so 7.5 is under half his weight. 10 is just over half his weight.

    He doesn't have any other symptoms though.
  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    This must be so disappointing for you, Gmummy. At least you are able to ring GOSH tomorrow and have a word with them.

    I wish I could answer your pred questions The truth is I've no idea how dosages pan out for adults let alone small children. I'm afraid you need the docs for that.

    Did they ever decide if it was JIA or is the diagnosis still ReA?

    I hope you will be told something positive tomorrow. I have a hospital appointment myself but I shall be thinking of you both.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • GmummyGmummy Posts: 8
    edited 30. Nov -1, 00:00
    hello everyone
    sorry I've been away for so long... thought I'd give an update. He started reception year and was on prednisolone... he was doing well on it but the dr decided to start him on Methotraxate because his blood results were still not quite 'normal'(some slightly elevated ESR, CRP etc). And so we started with the weekly dose of Meth in liquid form and folic acid the next night.

    And it's been BRILLIANT!! :):):) he's had 3 blood tests so far and they've been all clear. He's also off the pred (slowly weaned off) so no steriods.

    Touch wood he's all ok and his next blood test is on thursday. He still gets a rash but the consultant at GOSH is not worried about that. She was v pleased with his progress and thought he will be in remission...

    v happy. thanks for all your support on here.

    Gmummy...xx
  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    That's a lovely post, GMummy, especially at this time of year. I'm very pleased that things are going well for your little fellow and I do hope they continue that way. Good, too, that he's managed to get off the pred OK and is now a proper schoolboy :) I hope you all have a lovely Christmas and that the new year brings even better health.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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