9 year old son with Arthritis

frankiesmum

Hi all, i'm new to this site, but just wanted to hear from people in a similar situation to us. My 9 year old son has recently been diagnosed with arthritis. He's now on Methotrexate, naproxen and predisolone at the moment. He's been taking the methotrexate for 5 weeks now and it doesn't seemed to have kicked in yet. He's usually a very sporty boy but is unable to take part in most things at the moment. DOes anyone have any advice to give to a very stressed mummy!!

andylambs

Welcome Frankie's Mum. I'm a relative newcomer myself, but I've already found this forum to be friendly and helpful.

What you're going through right now is horribly distressing and difficult. It will get better. The doctors will find the right medication; once the arthritis is under control everything gets much easier though, of course, still sad.

At least you know what it is and he's getting the right treatment to stop any permanaent joint damage.

My daughter had a period where she was on methotrexate, naproxen and prednisolone as well. It seems to be a fairly common combination.

Expect that if it doesn't work perfectly they'll change things around a bit. There are a boatload of NSAIDs like naproxen and what works for one person is different from another. The prednisone will probably only be a short term thing until the methotrexate is working, which can take up to 12 weeks I believe.

Good luck and calm thoughts to you.
Andy

speedalong

Hi Frankie's Mum, I have OA so don't know much about these meds. This forum is most used by parents who compare their battles and the stress/anxiety of coping with and supporting a child with arthritis. I would post your question on the living forum too - as lots of adults will know first hand about these meds and be able to advise/comment.

Welcome to the forum, by the way.

Speedy

frankiesmum

Hi Andy,

Thanks for that information, how is your daughter now? Is she still on long term medication etc?

Thanks

illihor

Hi Frankiesmum, I have a 4 year old girl who was diagnosed last year. She is currently on methotrexate, ibuprofen and paracetamol as well as 3 other side effect tabs. They won't put my daughter on naproxen as she gets bad belly aches just with ibuprofen so don't want to try anything stronger. As for predisolone never heard of it so can't help on that one.

It took about 6 weeks for MTX to start kicking in. My first clues that it was actually working was she finally started sleeping through, then I could notice her moving more easily even though she said it still hurt just as much as before. It was a good 3 months before my daughter actually said the pain was better, "still ouches mummy but not as it was".

Once this had happened I slowly started bringing the pressure on to make her do more for herself. Like climbing stairs we had got to the point she wasn't doing them at all, even if busting for toilet she would wait for someone to carry her. Now 95% of the time she does them herself which as it's only been 6 months since first starting the injections is a massive thing for us. I still can't get her to walk very far and still can't get her to walk the whole way to school but I also have to be careful not to let her overdo it, so max of 5 stair climbs in any one day is more than enough for her otherwise she overdoes it and is really sore the next day.

It's hard for adults to pace themself let alone us pace a child as we don't know the pain they are in.

Michelle xxx

frankiesmum

illihor wrote:

Hi Frankiesmum, I have a 4 year old girl who was diagnosed last year. She is currently on methotrexate, ibuprofen and paracetamol as well as 3 other side effect tabs. They won't put my daughter on naproxen as she gets bad belly aches just with ibuprofen so don't want to try anything stronger. As for predisolone never heard of it so can't help on that one.

It took about 6 weeks for MTX to start kicking in. My first clues that it was actually working was she finally started sleeping through, then I could notice her moving more easily even though she said it still hurt just as much as before. It was a good 3 months before my daughter actually said the pain was better, "still ouches mummy but not as it was".

Once this had happened I slowly started bringing the pressure on to make her do more for herself. Like climbing stairs we had got to the point she wasn't doing them at all, even if busting for toilet she would wait for someone to carry her. Now 95% of the time she does them herself which as it's only been 6 months since first starting the injections is a massive thing for us. I still can't get her to walk very far and still can't get her to walk the whole way to school but I also have to be careful not to let her overdo it, so max of 5 stair climbs in any one day is more than enough for her otherwise she overdoes it and is really sore the next day.

It's hard for adults to pace themself let alone us pace a child as we don't know the pain they are in.

Michelle xxx

Hi Michelle,

Thanks for that info. I'm glad to hear your daughters improving.My son does sleep through the night, and is still doing his best to play football. He is a very sporty boy so this happening has really been a big upset for us all. To see him in pain is awul and as a parent you feel so helpless dont you? He says he's the only one like it and its really difficult to explain to him that there are lots of other kids the same!! He can climb stairs but walks very awkwardly, i just have faith in his rheumotologist at great ormond st and hope that once the medication works he can lead a fairly normal life. Fingers crossed it's something he will grow out of!
This forum is great because as a parent you feel very isolated and talking to parents in a 'similar' situation can really help.
Thanks for the reply!![/b]

dreamdaisy

It is possible for meds to affect inflammation levels positively, ie reduce them, but that does not mean that the pain goes. I have inflammation in single figures now, the first time for years, but pain levels are still high. I don't understand it, and I'm 51!

New drugs do take time to start having an effect: we're usually told 2 - 12 weeks. They take equally long to leave the body if meds are altered. I wish you all well. Dreamdaisy

illihor

dreamdaisy wrote:

It is possible for meds to affect inflammation levels positively, ie reduce them, but that does not mean that the pain goes. I have inflammation in single figures now, the first time for years, but pain levels are still high. I don't understand it, and I'm 51!

New drugs do take time to start having an effect: we're usually told 2 - 12 weeks. They take equally long to leave the body if meds are altered. I wish you all well. Dreamdaisy

Oh I agree there. Bristol have written us a letter saying (well copy to us but for gp) saying that although the MTX is helping unfortunately the arthritis is still active. Yes she is in pain but children tend to bounce back quicker than adults it's like a cold or ear ache give them ibuprofen and an hour later running round like crazy it's as we get older we tend to hold onto pain more.

andylambs

frankiesmum wrote:

Hi Andy,

Thanks for that information, how is your daughter now? Is she still on long term medication etc?

Thanks

My daughter is 6. She's now on a weekly injection of Enbrel and that's all. The methrotrexate never suited her; her liver tests were always a concern and she continued to have flares with new joints involved whiel she was on it. It took a year of trying different dosages of methotrexate with various NSAID combinations before we gave up and moved to the Enbrel.

Touch wood, she's been on the Enbrel for 6 months and there's no new inflammation. Her jaw is still not great, but every other joint is as good as it could be; including the fingers that have some permanent (very minor) deformation.

How's you son doing now?

Cheers,
Andy

frankiesmum

andylambs wrote:

frankiesmum wrote:

Hi Andy,

Thanks for that information, how is your daughter now? Is she still on long term medication etc?

Thanks

My daughter is 6. She's now on a weekly injection of Enbrel and that's all. The methrotrexate never suited her; her liver tests were always a concern and she continued to have flares with new joints involved whiel she was on it. It took a year of trying different dosages of methotrexate with various NSAID combinations before we gave up and moved to the Enbrel.

Touch wood, she's been on the Enbrel for 6 months and there's no new inflammation. Her jaw is still not great, but every other joint is as good as it could be; including the fingers that have some permanent (very minor) deformation.

How's you son doing now?

Cheers,
Andy

Hi Andy, Glad to hear you seem to have found the correct meds for your daughter.Just been to casualty today with him as he's not too good at the moment. Our GP looked at his bloods and sent s there as his HB is low (8.3) and CRP is 162 which is very high. They've said he's having a 'flare up' not sure why, it could be due to him coming off steroids last week. The methotrexate doesn't seem to be working as it will be 10 weeks this weekend and nothing has improved, in fact he seems worse!! He's very low and depressed and not really sure where to go from here. He has another appt at the hospital on Monday so we'll have to wait and see.
Thanks for you info