Help Please!

julie1

Can anyone offer any advise to help my 10 year old daughter who recently has been diagnosed with Psoriatic Idiopathic Junvenile Arthristis - She is takeing methotrexate and had steriod injections last August, but this week has had more due to inflamation again.

She is really strugerling, she is frightened of the illness, fearful of taking her medication, she is becoming very worried at leaving me when I am taking her to school. This is just heart breaking, I am trying my best to support her, but feel I am just letting her down.

I have left her at school this morning in floods of tears - and for the first time I have had to ask for help at school. They have behaviour support assistants, they are going to talk to her today.

Does anyone out there have the same ??
Thanks very much.

clairy

Hi Julie,

I'm not sure how much help i can be. I'm a grown up JIA'er but there are quite a few parents on here at the minute with children the same age as your daughter.

I know its really hard but your doing the right thing. I was diagnosed at 15 but had joint problems and surgery for them since age 10 (i'm 21 now) I remember when i was younger and my mum making me go to school when i didn't feel like it, but I'm glad i did as i missed enough school with hospital appointments and it meant i kept my friends and had half a chance when it came to my exams.

Hopefully the steroid she had will help her. Unfortunately this is some that can come and go and takes time to get back under control, but you will get there.

The only thing i can suggest is just be there for your daughter. I gave my mum a hard time when i was younger, but now i don't know what i would do without her, and i really appreciate everything she did for me.

Hang on in there.

julie1

Hi - sorry about your JIA - thanks for your advise, makes me feel better knowing I sent her to school today. It's just heart breaking to see her so upset. As you say, there is enought time of school attending hospital appointments etc. Also, I think while she is at school, she is busy working and with her friends, which does take her mind off the illness. I ended up in tears this morning which I am sure doesn't help!! We just have to keep going!!

Thanks very much for your advice - so glad I joined this forum.
Take care
xx

clairy wrote:

Hi Julie,

I'm not sure how much help i can be. I'm a grown up JIA'er but there are quite a few parents on here at the minute with children the same age as your daughter.

I know its really hard but your doing the right thing. I was diagnosed at 15 but had joint problems and surgery for them since age 10 (i'm 21 now) I remember when i was younger and my mum making me go to school when i didn't feel like it, but I'm glad i did as i missed enough school with hospital appointments and it meant i kept my friends and had half a chance when it came to my exams.

Hopefully the steroid she had will help her. Unfortunately this is some that can come and go and takes time to get back under control, but you will get there.

The only thing i can suggest is just be there for your daughter. I gave my mum a hard time when i was younger, but now i don't know what i would do without her, and i really appreciate everything she did for me.

Hang on in there.

tracy78

julie1 wrote:

Can anyone offer any advise to help my 10 year old daughter who recently has been diagnosed with Psoriatic Idiopathic Junvenile Arthristis - She is takeing methotrexate and had steriod injections last August, but this week has had more due to inflamation again.

She is really strugerling, she is frightened of the illness, fearful of taking her medication, she is becoming very worried at leaving me when I am taking her to school. This is just heart breaking, I am trying my best to support her, but feel I am just letting her down.

I have left her at school this morning in floods of tears - and for the first time I have had to ask for help at school. They have behaviour support assistants, they are going to talk to her today.

Does anyone out there have the same ??
Thanks very much.

Hi I often have the same problems with my daughter who is 11, I do try to send her to school as often as I can but there are just some days when it is heartbreaking. Lauryn (my daughter) is going through a bit of a flare at the minute and I have had to keep her off this week as her ankle was swollen so bad she couldnt walk in a shoe. Last week I sent her and the school had to call me later and get me to pick her up so sometimes you dont know what to do. I do empathise with you.
I try to tell my daughter exactly what Clairy says, that it'll benefit her in the long run,but she can be difficult and I'm just keeping giong that in the hope that one day she'll be saying the same things as Clairy.