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14 year old Son - Systemic JIA

Chelle123Chelle123 Posts: 23
edited 16. Nov 2012, 03:45 in My Child Has Arthritis
Hi,
Three months ago my 14 year old son became suddenly unwell with a spiking fever, swollen glands, loss of appetite, rash all over his body and stiff painful joints. Initially I thought he had glandular fever and treated him with ibuprofen and paracetamol. After 5 days of not eating our GP admitted him to hospital. It took six weeks of IV antibiotics, scans and hospital stays to diagnose the condition.

My son is now taking 15mg predniselone, indometicine 3 x per day and methotrexate 15mg injection once a week. We saw the consultant two weeks ago and typically he was having a 'good' day. Because he looked so well the consultant reduced his steroids to 10mg and his indometicine to 2 x per day. Within 48 hours of reducing the medication even this small amount he could not get out of bed, had a spiking temp of 42.2 and the rash was back. I am amazed at how quickly the symptoms re-appeared.
Our GP has increased his medication to the original doses and he is doing okish.
I am hoping to see our consultant again now before we go on holiday as I am quite concerned about him flaring up whilst abroad.

I am assuming that because of this reaction it is the steroids and anti inflam's making the difference and not the methotrexate.

Has anyone else experienced this with medication. I am wondering if the consultant will increase his methotrexate before reducing the steroids next time.

Also, what are your experiences of travelling, do you get a letter from your GP to take with you , just in case.

Sorry for the waffle, this is a whole new experience for me. Three months I had a healthy independent son who played every sport you could imagine to high level and was full of self confidence. At first he seemed to cope well with his diagnosis but as time has gone on his self esteem is taking a knocking, he can't keep up with his friends and he seems very down in the dumps.

Thanks for listening
Chelle

Comments

  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Chelle and welcome to the forum. I’m not the parent of a child with arthritis although I do have two sons and two grandsons. My elder son was (indeed, at 41, still is) into all sports so I can imagine how devastated both you and your lad must feel. I was diagnosed with arthritis aged 15.

    Normally people seem to be started on pred, with or without anti-inflammatories, to keep things on a relatively even keel until the methotrexate kicks in. This can take several weeks. By my reckoning, from what you’ve written, your son has probably only been on it for about 6 weeks so I guess the jury’s still out as to whether or not it’s working for him. I think you are right to try to see the consultant again as a flare while abroad would be harder to deal with though, if all else fails, you could ask your GP for extra pred and instructions on how to take it if it happens.

    I’ve no experience of travelling with injectable stuff. I know others have and it’s a question best put on the Living With Arthritis forum. I travel to the USA regularly to see my son and I always keep at least a week’s supply of meds in my hand luggage as cases do, occasionally, get delayed. I use a clear, plastic bag – the kind that seals up. I’ve never needed a doc’s note for USA but I think at least a current prescription would be advisable for Europe. And, if he takes any pain meds, do check out first that they are acceptable in the country you’re going to.

    Have you thought about wheelchair assistance at the airports? I imagine it’s the last thing your lad would want but, if he finds standing around in queues very painful, it would help.

    No wonder his self-esteem has taken a knocking. It’s a lot for anyone to deal with let alone a sporty lad of that age. I do hope things improve rapidly for you both.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Chelle123Chelle123 Posts: 23
    edited 30. Nov -1, 00:00
    Thank you so much for your supportive reply.
    I will also put a post on the Living With Arthritis forum (haven't quite worked around the site yet).

    My GP has just call to say she has been speaking to the consultant and they are increasing his mtx to 20mg. You are quite right though about waiting for the medication to kick in. It has only been 6 weeks since treatment started so we should still see some improvement. It is such a long process and we need to be a bit patient. This is quite difficult for a 14 year old.

    I had thought about contacting the airline before we travel to see if we could have priority boarding, but as he does not need a wheelchair I'm not sure if they will help. I am concerned that he will be exhausted before we get on the plane after standing for long periods of time, but don't want to feel a fraud if he is having a 'good day'.

    This forum is a godsend.
    Thank you
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    I couldn’t agree more about the process being long and extremely demanding of patience. One thing that occurs to me is that, if your son is taking indomethacin regularly, he should always take it with food and it would be best if he also took a stomach protecting med such as omeprazole or lansoprazole. I know it seems like yet another med but these are considered very safe ones and anti-inflamms are notorious for damaging stomachs.

    I’m not sure about the priority boarding thing if you don’t have a wheelchair (If you ask for wheelchair assistance, one can be borrowed at the airport if he’d be prepared to use it) or a stick or somesuch. However, I’d have thought that boarding is less of a problem than queueing with baggage, queueing for security, queueing at baggage reclaim etc.
    “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
    Hello Chelle123, I am not a mum but I do have an auto-immune arthritis and I inject meth. In the days when the hospital did my injections I would miss the weeks I was away (hurrah!) but now I do my own. I haven't tackled the 'adventure' of foreign travel yet for a number of reasons (all selfish I freeely admit) but hopefully one day I'll find the courage.

    I was so sorry to read about your lad, what an utter shock for both him and you. Six weeks is not long to be on the meth and I hope you soon find that it is helping him to feel and cope better. I hope you all have a good holiday, JIA not withstanding, and that the airlines etc prove to be helpful. I second the idea of a wheelchair - the one thing we arthritics learn quite early is that putting our bodies under extra - and possibly un-necessary stress - is pointless as it just makes things worse for longer. I am pleased you have found the forum and I hope we can help with encouragement and support. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Chelle123Chelle123 Posts: 23
    edited 30. Nov -1, 00:00
    Unfortunately, my son has to learn when he is over doing things. Telling him does not compute. He is 14 and knows best and at the moment learning the hard way by feeling terrible 48 hours after doing too much.

    On a good day last week he decided to go to football training. He is not allowed to do contact sport but wanted to take part in the stretching and ball skills. This was after completing a full day at school.

    I think he just wanted to feel normal for a while. We are now paying the price!
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    I so understand where you're coming from. My eldest developed Osgood Schlatter's Disease aged 14 and was forbidden to run for several months. Instead of bowling fast he turned to leg spin, instead of batting middle order he went in No11 and always fielded in slips. That was his compromise.

    It must be very hard on your son. It's not just the physical limitations but, I imagine, half his social life too. It will get better once the meds start working but it will seem a long, long wait.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Chelle123Chelle123 Posts: 23
    edited 30. Nov -1, 00:00
    Thank you Stickywicket,
    I think the difficutly is that Tom's friends think he is ok because he looks normal. Tom tries to keep up with them because he wants to fit in and be 'normal'. His MTX has been increased to 20mg this week so I hope this helps. I guess it will be at least 6 weeks before we notice any change. Just hope he doesn't get any side effects from increasing the dose.

    Trying to stay positive and keep things as normal as possilbe for him. Exhausting trying to show I'm chilled out and not worried all the time.

    It is good to have the oppertunity to chat to others who understand. I think at times even family members don't quite understand.

    Chelle123 :)
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    To be honest, who does understand an illness or disease until it hits them personally, least of all active young teenagers?

    Have you tried googling The Spoon Theory? It has helped a lot of people on here explain the reality of living with arthritis to those who don't have to.
    “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
    This is an extraordinarlily steep learning curve for the pair of you, OMG life sucks sometimes. :x How are you coping with being mum and 'nurse'? Do you have a partner to help support you? I guess all the focus will be on your lad as he is the one who is poorly but you need some focus too. I remember seeing my mum cry one day when we were at the doctors (this was in 1967 after the asthma had tried to kill me off for the second time). The GP turned to her and said 'How is mum coping?' I didn't know she wasn't, she was just 'mum' and ergo always there. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Chelle123Chelle123 Posts: 23
    edited 30. Nov -1, 00:00
    Hi Dreamdaisy,
    You are the only person who has asked how I am coping. To tell you the truth I have good and bad days. I feel like I'm peddling like mad to try and keep things normal for my son and feel totally exhausted both mentally and physically.

    I also have a younger son who is 11 and feel I have neglected him over the past few months. My husband is very supportive but is equally devastated about this diagnosis.

    I think if there is anything positive about this horrible disease it's that my son and I have become very close. Having a poorly child makes you realise what the important things in life are and I feel blessed to have such wonderful children and husband.

    Thank you for your kind words
    Chelle
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I am so pleased to hear that you have an understanding OH (other half) but, as I often say, arthritis not only affect the person who has it, it spreads its poisonous tentacles here, there and everywhere.

    This is a horrid time for all of you, there's no doubt about that. Suddenly all the 'certainties' about life have completely disappeared and everyone is left floundering in the mire this dross causes. The male of the species llikes to fix things, they like to repair and mend and suddenly they find that someone they care about so very, very much cannot be 'fixed' or 'mended'. I know my OH struggles with this, he feels redundant (he's anything but). There is also the hurdle of understanding that going to a doctor and getting medication does not necessarily mean the problem will go away. The meds control, not cure. That's a total bummer.

    We're with you, I know I'm not a mum but I do care, as do others, we know how tough this stuff can be and we will do what we can to encourage and support. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • howellandrewhowellandrew Posts: 15
    edited 30. Nov -1, 00:00
    That's true, arthritis affect all members associated with the person who has arthritis. All members feel unhappy when the pain increased.
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