How do you cope with flare ups?

illihor

I just don't know what to do with her, she's having a flare up (I think) and isn't coping well at the moment. She was like this last Tuesday and they couldn't fit her into hydro till tomorrow and she's still bad now not sure how long flare ups last either.

Today she had a swimming lesson in local pool and omg what a difference to 2 weeks ago, she could hardly climb out again was so slow moving wouldn't use her left side at all. Even her teacher noticed a huge decline in her this week. She's already in bed out gold has been since 6.15

she says she doesn't want to ho nursery tomorrow but I'll be sending her not sure if that's the right choice. She's finally got her eye check on Wednesday and everything is happening at once yet again. Shoes are being chased as for some reason they were very late being ordered and have only just been done grrr. Speech and language have contacted us and finally she will be seen on Monday.

My diary has never been so full I don't think we have any space left for anything with physio, hydro, dr's school life etc etc.

She keeps saying she's tired and hungry but won't eat what can I do how does everyone else cope with bad times especially with other children who get upset when I say no as she's not feeling well.

Michelle xxx

shannonsmum

Hi Michelle,

I really do sympathise with you. Shannon is also flaring at the mo I thought she was and her bloods have come back to comfirm it. She has cons next friday and i think they may up her meds which may mean another injection so the nurses have said!!!

Its just so hard as a mum to know what is the best thing to do to help them. Shannon has only now been able to tell me how she really feels with pain and things,she wouldnt tell me before because she thought i would ring the cons and she would have to go into hosp! so sad. But I sat her down and we had a chat and she now has explained why she cant sleep and how it feels for her. I hate that my baby has this and there is nothing i can do to help her other than comfort her and support her.

Hope your little one picks up again soon. Love to you both.

Sam
xx

illihor wrote:

I just don't know what to do with her, she's having a flare up (I think) and isn't coping well at the moment. She was like this last Tuesday and they couldn't fit her into hydro till tomorrow and she's still bad now not sure how long flare ups last either.

Today she had a swimming lesson in local pool and omg what a difference to 2 weeks ago, she could hardly climb out again was so slow moving wouldn't use her left side at all. Even her teacher noticed a huge decline in her this week. She's already in bed out gold has been since 6.15

she says she doesn't want to ho nursery tomorrow but I'll be sending her not sure if that's the right choice. She's finally got her eye check on Wednesday and everything is happening at once yet again. Shoes are being chased as for some reason they were very late being ordered and have only just been done grrr. Speech and language have contacted us and finally she will be seen on Monday.

My diary has never been so full I don't think we have any space left for anything with physio, hydro, dr's school life etc etc.

She keeps saying she's tired and hungry but won't eat what can I do how does everyone else cope with bad times especially with other children who get upset when I say no as she's not feeling well.

Michelle xxx