New scared parent

dartgirl

Hello there, my little girl who is just 2, was diagnosed the polyarticular JIA on 23rd Feb and at the mo i feel like i'm in the middle of a tornado!! She started limping 2 weeks before xmas and had been through a barage of tests until one eagle eyed peadiatritian noticed her knees were as hot a coal and referred her to their peads rheumatology clinic which luckily was only 2 weeks away (come down from Oxford Nuffield centre every 12 weeks). She currently has swelling in 8 joints, both knees,both joints both ankles, right elbow and left wrist. Feel very lucky to get a prompt diagnosis, and now i enter the unknown. CArol-Ann has been vaccinated against chicken pox so that there is no fear that will interfere with treatment and on 1st MArch she had steroid joint injections in all 8 joints (6 days after diagnosis), has made a huge difference already which is soo good. We start predisolone on 11th March for a short time and she also starts weekly methotrexate injection aswell then. Was wondering if i could get some feedback on these meds, side effects etc and if anyone has any tips for giving them to a kid who hates meds.
I look forward to using this forum as we travel down this long road, and to know i'm not alone. xxx

StephanieJoanna

Aw I am sure some people with same problem do know hwo you feel and what you're going through, If they are tablets make sure sure you really crush them up and mix them in with food ideal with mash I had to take some tablets when i had an operation, I wasn't eating so it got put in my corned beef hash when I was 12 obviously a 2 year old wouldn't really tell.
If it is medicine, then best for a drink, perferably the same flavour. Take care I am sure others would wish you and your daughter luck for the future and I do as well, I know you will see light at the en of the tunnel soon I hope take care xx

Stephanie

janeb

Hello I also have a daughter who has recently been diagnosed with arthritis she is 4. I am glad you had prompt treatment sounds like you have a great doctor. My daughter was also on prednisolone, my advice is to mix the tablets with calpol, if she will tolerate it , my daughter does not mind calpol and it really hides the taste of them. Also watch out for thrush it can be a nasty side effect. Katie started methothrexate injections three weeks ago they are terrible but unfortunately neccessary. Ask for anesthetic cream to apply to her leg at least two hours before hand, it really helps. Also give her her anti sickness medicine an hour before her jab i found this stopped Katie being sick. Katie tends to go off her food for about two days after treatment so try and feed her up the rest of the week, She has only been sick once but the treatment is traumatic, you feel so guilty but you have to keep smiling for their sake.
Good luck with your treatment i check in most days so feel free to get in touch I am just beginning to get my head around it all. Jane x

dartgirl

Thank u for your replies, the oral steroids i have as a liquid suspension, so hopefully that won't be too bad, thought they would be tablets but got a nice surprise when i picked up from pharmacy yesterday. Don't smell that good i have to admit though. I asked about anti-sickness or folic acid and they will wait to see how she tolerates b4 prescribing, i have been prescibed some stuff i give he every eve that reduces acid in the tummy and this helps apparently. I'm starting to get head round this, my husband however is still in " Why my little girl" phase, been very quiet, but once we really get going I think he will be ok.

anita01

Hi Dartgirl,

Just to add that my 8 yr old daughter takes soluble prednisolone, you can dissolve them in a very small amount of water then top up with a little juice/squash.

Sounds like you are doing really well getting to grips with this, we also were relieved to get a diagnosis(worried about leukaemia), then it hit home that the future wasn't going to be what you'd imagined/hoped for your child. I don't think there are any parents who don't get upset about it even years on, It is a tough illness but going to Gt Ormond st the other day really makes you feel humbled, seeing what some others have to cope with,

Contact the CCAA too for more info,

Best wishes,
Anita

Take care,
Anita

dartgirl

Thank u Anita great tip, will definatly try that. I am very scared and apprehensive, but I too was humbled by being at the Children's Hospital at the JOhn Radcliffe on Tues and seeing lots of other kids with much bigger problems. And most wth a big smile!! My coping mechanism is to read and get information, i guess that comes from my previous life as a nurse student, but when it's ur own (even though i've done loads of times, injecting my own daughter seems scary!!) it is all very different!!
I suppose i'm upbeat at the mo as steoid injections have made her so much better, but as i'm discovering you never know what is round the corner and for me that's un-nerving. No doubt i'll be back soon xxx
Lisa xx

illihor

My daughter is 5 and is on Methotrexate and Etanercept. She also has polyarticular although they think it's more likely psoriatic. My daughter was on oral steroids for 2 months but in tablet form (she amazed the doctors at being able to take tablets at 3 years old and it does make life so much easier).

Both MTX and Etanercept are injections and she takes folic acid every week to help with the stomach aches. It is a very rocky road to be sure, you think your doing well then something happens and knocks you flat again but seeing how well Kayleigh copes and just gets on with things has truly amazed me. I've had to do some tough loving these past few weeks to encourage her to move and build up her mussles again but I can already see the benefits even though it pains me to see her struggle.

Good luck and it's great to hear you have been sorted so quickly and things have moved well for you.

Michelle xxx

lindseyhall

Hi, I'm a mum too. matthew was 18months when he was diagnosed. It is really scary at first and so isolating!! Please check out my Facebook forum. We really do keep in touch on here and I'm sure you'll find much of what you experience as a family is in common with many of our stories. Bets wishes. Lindsey X
http://www.facebook.com/permalink.php?story_fbid=10150112588442884&id=12131682883#!/group.php?gid=12131682883

lindseyhall

I also understand your whirlwind feeling!!! I hope things settle but sometimes they don't and things progress. Great news about the quick diagnosis as this is a really frustrating time sometimes. Steriods are wonderful but the teams don't really like to do this too often as the long term afftects aren't great. Methotrexate is usually the next step and is either oral or via sub-cut injection. Most common side affect is sickness and upset stomach and sometimes ulcers in the mouth.
Good luck and speak soon Lindsey X

Carrie77

Crumbs I feel I am repeating myself on here but I read this and it just struck me.

I was diagnosed with JIA at aged 15 mths old. My parents thought I was dying so they were relieved when I got the diagnoses of JIA because they knew you couldn't die from it.

I had replaced knees by aged 16, I went to see the world specialist, a Dr Ansell who never allowed us to use wheelchairs on her wards, her message being "move it or loose it"! She was a scary lady but very wise! Her predecessor is prof Woo at Great Ormand Street. So I never sat still, my folks got me a trike, they brought loads of lego to keep my hands moving, a keyboard to also keep hands moving. They never let me stay still and to this day I don't sit still for long fearing I will "loose it". I am not wheelchair bound needless to say. I don't even use crutches. I do have a walking distance of an ageing snail so I drive. I am happily married and a first time mummy with an 8mth old baby (which is fun and games with severe arthritis)and I am a Psychologist. I have been to Glastonbury festival 3 times, lived it up at uni, gone to several concerts etc. Life has been fab, sometimes very painful, sometimes scary having to stay in hospital for months, all those blood tests I cried and cried with and ended up being bribed by my parents to stay calm with a new Mr Men book (I had the definitive collection after 6 yrs!). I have predominantly been treated by a research steroid at the time called Deflazacourt so I am small at 4ft 11 and petite all over but it doesn't have the side effects the older steroid,Prednisolone,has. I found methotrexate disgusting stuff, I ended up hiding it in my squirrel PJ case when I reached aged 8 hahaha. Tried it again as a teen and it still wasn't good for me. I now use steroids and Anti TNF and can not live without anti inflammatory. Other than that, a round of meds in the morning and three at night and life is ok,life is good.

I hate plugging my blog but it goes into detail and will discuss other factors like being a teen with JIA etc but the only time I have ever felt very different is really since becoming a mother because society still thinks no disabled people have babies hahahaha, so I am changing that!

http://disabledpositiveparent.blogspot.com/

Carrie