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[Patricia W]

I've just heard that my three year old grandaughter who lives in Australia has been diagnosed with Juvenile Ideopathic Arthritis. Anyone on here know much about it?

 

Apparently, she is much happier now she's on medication. And I gather it can go into remission, but I really don't know much about it at all. Any advice welcome.

 

Tricia

[figarogir1]

I have a girl (pupil) who was in my class who has this. She has to go to the hospital once every few months for injections and occasionally suffers with aches and pains but seems to be improving as she gets older. She is 10 now and I have known her for a couple of years. She manages to lead a completely normal life. We are only aware of it in school in case she is having a bad day and wants to avoid PE. You can imagine how often bad days coincide with outdoor PE in the winter

[coco]

I suffered from this between the ages of 4 and 7 years . From what I remember I spent a lot of time in hostpital but bear in mind this was the early 1970's so medical care has advanced since then. I also had it at age 15 and the last time was when I was 21. Treatment was penicillin and steriods. I would say the only long lasting effect it has had is a tendency to have recurring arthiritis in both wrists, its possibly left me shorter than i would have been, my parents were 6' 2 and 5' 10 I'm 5'4 so not too bad. Inbetween bouts I lived a perfectly normal life.

[Patricia W]

Thanks both, that's really helpful

 

Tricia

[bluekarin]

My YD has had it for about 2 years now. For her it started with swollen knees when she was nearly 9 which resembled grapefruit Which on her beanpole legs looked odd. The GP thought she might have septicaemia, which frightened us a bit. She was then referred to the Children's unit at our local hospital to see a Dr, but we then had an earlier appointment with another Dr who it turns out, guessed what she had and was right.

 

She started on Prednisolone tablets and then as she wasn't responding she started taking Methotrexate tablets once a week. She then switched to Methotrexate injections once a week as she was feeling so poorly with it in tablet form. She also started taking Steroid tablets daily to help strengthen her joints, but unfortunately developed Cushings Syndrome (causes face to swell up quite a lot), so he was then weaned off the steroids and regained 'her' back. The Methotrexate is quite a strong anti gen medicine and if you look it up, please don't be alarmed like I was when the first things that come up are cancer treatments. Its just a medicine that targets the antibodies which cause the inflammation in arthritis, and switches them off. You also have to take a folic acid tablet the night before to help your liver.

 

She is now on weekly injections of Methotrexate, has had two steroid injections in her knees and ankle (the first of which lasted from last November until nearly June this year, which was excellent).

 

I think the worse things for her now are the weekly injections, which are numbed with a cream called EMLA and the blood tests to check liver function and full blood count. She was having monthly ones, but as they have all been clear, they have gone to two and now 3 monthly. She has a 3 monthly eye test to check for Uvitis (inflammation of the eye).

 

To start with, it was absolutely heartbreaking to see her in so much pain when walking and trying to just go upstairs. We had to get a wheelchair to help her get to school in the morning as she just couldn't walk there. She was such an active girl, and the good news she is getting back that way again.

 

It is also heartbreaking when some of her classmates just can't understand why some days she was fine to do games and PE and other days she wasn't. I only mention this in response to figarogir1 comments

We are only aware of it in school in case she is having a bad day and wants to avoid PE. You can imagine how often bad days coincide with outdoor PE in the winter

which made it sound like child with JIA in her class makes up days that they feel 'worse' and don't really want to go outside, when in fact they don't. My daughter would more than have loved to join in with her friends. If this wasn't what you meant, then I am sorry, I take it back. But, as you may have guessed I am a little sensitive on this subject.

 

Anyway, my YD is doing well now She is on the weekly Methotrexate injections for another two years, if she doesn't have another flare up. If she does, then she'll be having them for longer You do grow out of it but everyone is different. I hope all goes well for your granddaughter. If you want to know anything else, please PM me and I'd be most happy to help. Its scary enough when its your child, but when its someone who is so far away, I'm guessing you are feeling a bit helpless ((hugs))

[Patricia W]

Thanks Bluekarin, I may well take you up on the offer to pm.

 

We've just skyped with them and it seems she's much better since she started the medication (began with a N.. ) The doctors have said if she can stabilise over the next 6 months then it may be a indication it will not get worse. But they are taking it day to day.

 

Apparently, it became apparent during their cold weather when she began to have difficulty walking in the mornings as it seems to be affecting knees and ankles. Now their good weather is beginning so hopefully that will help too.

 

Tricia