new, feeling worried and isolated.

tothemoonandback
tothemoonandback Member Posts: 9
edited 1. Jul 2013, 15:33 in My child has arthritis
Hi, I am mum to a 6 yr old boy who already has complex needs. following a period of about 18months of illness, spiky temps, rashes and pain/swelling he was admitted to hospital last week. we are now told we could be looking at SO JIA. will be put on the 'urgent list' to see rheumatologist.

so, my little one has septa-optic dysplasia, developmental delay and bilateral radioulnar synystosis. He has always had a special needs buggy but his reliance on this has become greater over the last 18 months, and has since been provided with a wheelchair by occupational therapy. he is unable to walk far.

So now were looking at this new diagnosis and I am feeling a bit confused, and overwhelmed, I am feeling relieved on one hand that now we could have some answers, but worried too.

just looking for some reassurance for the months ahead i guess, an idea of what we could be looking at happening, what we should be expecting. obviously i'm aware each child's case will be very different.

thanks

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am so sorry that you have had to find us. I am not a mum but I remember my poorly childhood and how much pressure my mum must have been under - when you're a child you don't realise it but I do remember her always being there, a constant presence of love, strength and encouragement and I am sure that also applies to you.

    Your little lad does have a great deal to contend with, there's no doubt about that, and I hope that he can soon see the rheumatologist. There are meds available which are designed to bring the JIA under control - come and talk to us about them when / if they are suggested because we know our stuff and will give you reliable information. (There is a lot of dross on the www, much of it innacurate so please resist the temptation to google.) You could also ring the helpline here to see if they have any publications they could send to you. I wont be able to help with your lad but I am more than happy to offer you support - your needs also matter.

    I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tothemoonandback
    tothemoonandback Member Posts: 9
    edited 30. Nov -1, 00:00
    Thank you, I am trying to do all I can, part of me is feeling guilty for missing this and thinking many of the symptoms have been to do with his other difficulties, but now were on the right path I guess. I've recently been struggling with feelings of isolation, he is a complex kid and doesn't/can't do the same activities his class mates, and inevitably other mums are doing, so I'm feeling out of the loop so to speak. Even my own friends don't really understand how we as parents are feeling.

    Sorry for sounding so glum. One if those days
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Other mums at your school gate won't have a clue about your feelings but I hope they offer some support for you. I worked as a private tutor for dyslexics, one of my last pupils had cerebral palsy (his twin sister didn't) and his Mum was usually tired - and isolated too. It's not easy. The mums on here, however, will, and I hope you hear from one or two very soon. (They are busy people and not always about.)

    Don't load yourself with un-necessary guilt about what you may or may not have missed. Given his other conditions you wouldn't necessarily have noticed the JIA and - to be fair - you probably weren't even aware that arthrtis could affect such young ones? I think the youngest age I've seen on here is 18 months - utterly outrageous. I don't know much about JIA but I have had an auto-immune arthritis for the last seventeen years and osteo has joined in too so I have a vague idea about things. :wink: Do you have any other children? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tothemoonandback
    tothemoonandback Member Posts: 9
    edited 30. Nov -1, 00:00
    Thank you DD for your replies, a bit of reassurance hat I've needed. Yes I have 4 children, my middle 2 are adopted, (the little one with the difficulties and his birth sister) I'm sure very soon I will pick myself up and power on through.

    How are you coping with your arthritis? Do you need much extra help daily?

    Thank you again x
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    Welcome to this site it's great for support/ advice/ sympathy and laughter and helped me so much over the years especially these last four
    I can offer you no advice but want to offer my support
    My daughter was diagnosed last July a month before her 18th birthday with ulcerative colitis an auto immune disease which comes from me and my side of the family and wish I could have it for her and I bet you feel the same
    So unfair when they are so young
    Just remember we are all here for you the good days as well as the bad so keep posting
    Maria
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi, how are things with you both today? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tothemoonandback
    tothemoonandback Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi, thank you for asking. I think today I am feeling very slightly better, realised theres not a great deal I can do at the moment, a waiting game I guess. Little fella hasn't had a bad day, despite a really bad night, high temp 39.4 throughout the night, but seemed ok in the morning, usual sort of pain in school and school giving him pain relief, which has become a regular occurrence. He really needs some organised pain relief. I'm going to call the consultant next week and see where we are on the 'urgent list' lol. We go on holiday in 4 weeks and I really need to have some pain relief in place by then.

    again, thank you.
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    Where abouts are you? Niamh had her first consultant appointment with in two weeks of being referred by our local hospital
  • tothemoonandback
    tothemoonandback Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi, we're in sheffield. We've had contact with the rheumatology team and have an appointment next week.
  • tothemoonandback
    tothemoonandback Member Posts: 9
    edited 30. Nov -1, 00:00
    Ye!! Had a call from rheumatology today, got an appointment Saturday!! Hope things get sorted!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh that is good news, I am pleased. Don't build your hopes up too high but let's hope that you are able to start sorting something out, yes? Please let us know how you get on - I'm having a rough time but I am looking in on here from time to time. Take care and good luck for Saturday. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lizajane10
    lizajane10 Member Posts: 16
    edited 30. Nov -1, 00:00
    Poor little chap, my son was diagnosed nearly 6 months ago with SO JIA but he's 15. 18 months is a long time to be ill but as he has so many other problems I'm not surprised it's taken a long time to get to this stage. I think we were very lucky to get seen so quickly, my son had been in hospital for 2 days then referred to a dermatologist because of the rash, she was in turn concerned about joint pains and phoned a rheumatologist who saw us the next day! In his case it was less than a month from first being ill to getting the diagnosis.
    6 months on my son is taking quite a variety of drugs and due to start another next week, but we did have weekly appointments to start with, now reduced to about every two months, so be prepared for spending a lot of time at the hospital. Let us know how you get on at the hospital. I think in our case what clinched the diagnosis was taking temperatures every few hours and making a graph - you could see quite clearly that his temperature was very high each morning and reduced to normal later in the day, a very characteristic sign. They should probably have seen that when he was in hospital but he was having paracetamol then which masked it to a certain extent.
    My son has had a lot of ups and downs with missing school and drug side effects, but at present seems a lot better so we are more hopeful.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, how did it go yesterday? I have been thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tothemoonandback
    tothemoonandback Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi all, Thank you so much for your replies, kind/reassuring words and thoughts.

    we were ages at the appointment, doctor very good with him, gave him a good looking over. were going in tomorrow for the initial blood tests, and I have to call rheumatology nurses if he becomes unwell to go in for bloods doing at this time.

    Lots of things that are flagging concerns for the consultant we have put down to other issues, for example he has radio ulnar synystosis, which means he cannot rotate his arms into a palm up position, his elbows are very often red and swollen and he complains of pain a lot. we have always put this down to this condition, but at the same time have been told this shouldn't cause him pain, and dismissed a bit.
    He has a visual impairment, and often complains of pain in his eyes, spits on his fingers and wipes his eyes, because he says they are dry. again, we presumed all part of the visual impairment.
    He has always had gastrointestinal problems, and although on medication and generally under control he has recently been complaining of stomach pain, stinging feeling, but cannot be explained by the gastro team.
    He is a very tiny child, with very slow growth and weight gain, again monitored by endocrine clinic, thought due to the FAS.
    I think because of the many conflicting health problems he has it isn't going to be an easy ride, but this consultant was positive in the fact he didn't just send us off with a flea in our ear, he said he thinks this maybe one of a group of rare conditions??
    I don't think I asked enough, I was almost too worried too, thought i would wait and see what the bloods say, although again he did say it wouldn't be suprising if the bloods were not unusual?

    thank you every one.
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    Your poor little son he is such a brave little boy
    Just wish I had a magic wand to make him better
    Children should not have to suffer
    You also are brave you show great strength
    Hope they can help him and you manage to go on your holiday
    Kind regards
    Maria
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh lordy, your poor little mite, that is a deal to contend with (and for you too). I am not a doctor but the dry eyes rang a little reminiscent bell of Sjogren's Syndrome, another in the auto-immune spectrum of troubles. He's a complex little lad, isn't he? The bloods may well show something is up, I don't know; as for asking questions how the heck are you supposed to know what to ask? You are all on a steep learning curve, and your bit is possibly the steepest of all. One thing I know for sure, however, is this: he has a very caring mum and that will make all the difference. Keep us up-to-date, please and I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tothemoonandback
    tothemoonandback Member Posts: 9
    edited 30. Nov -1, 00:00
    He certainly is a brave little soul, and despite everything, the happiest little boy anyone could meet. he makes me smile every single day!!

    Definitely on a learning curve, but one I am feeling a bit more positive about, I feel relieved in knowing that someone is now listening to us and I am not just thought to be an over reacting parent. Hope that continues.

    We are definitely looking forward to our holiday, hoping he isnt unwell for it, while we are there, not just so he enjoys it as much as he can but also so we don't miss the opportunity for the bloods to be done if were away! lol thats not a good way to think I know, but any delay is not welcome.

    Anyway, thanks for all support, will keep you posted.
  • lizajane10
    lizajane10 Member Posts: 16
    edited 30. Nov -1, 00:00
    Sounds very difficult, I work in a special school and many of our children have several medical conditions or disabilities not just one, it must make life very complicated. I hope he gets the care he needs now.

    Could uveitis cause dry or sore eyes, anyone who's more knowledgeable than me? Though that's not very common if he does turn out to have SO JIA.