Anyone have a child with CFS?

[Faintlinesquints]

I've posted before about my dds many health issues and everyone has been wonderfully supportive.

We had our paediatrician again today and she strongly suspects dd (who has just turned 11) has chronic fatigue syndrome.

I have to say that the doctor was great, she wants to repeat dds brain MRI and took more bloods today as she wants to make sure they're not missing anything else before a definite diagnosis is made. We also are getting cahms and physio involved and after the tests she wants to see us out of clinic so she can spend a good hour or so with us going through things so we fully understand what steps to put in place and how to support dd.

Has anyone been in a similar situation with their DC? I'm a bit dumbfounded tbh, I wasn't aware this could be diagnosed so young and although it makes sense with everything going on with dd, I can't help but hope they find something else that is easily treated.

Really worried and needing a hand hold, thanks.

A friends daughter was diagnosed young with CFS and eventually ME. The charity Invest in ME should be able to help and they have a forum for advice.

Thanks @gino I haven't heard of that charity so I'll go and have a look.

I thought cfs/me were the same thing? I really don't know much about this at all yet. How does your friends daughter cope?

My cousins daughter had CFS which led to ME but is ok now. My husband had ME too and at the time he thought his life was over. He was mid 20s and could barely do anything but he did get better. He learned not to push himself and had cognitive therapy. I think patience is key as he would start to feel better but then have a blip again. I think there can be a positive outcome.
Good luck

Thank you @mummytron that's a positive comment, I'm glad your dh has improved and he has learnt about managing himself making things better.

Dd is quite upset tonight, she can barely function going to school, she comes home after and goes to sleep! I worry that as she starts high school there will be more stress and hard work put on her which could make things worse, she's already left gymnastics which she was very talented at because she just couldn't manage, I think she is learning already what she can and can not manage but it's really upsetting having to watch her limit herself doing things she loves because of how awful she feels.

It is hard. My little cousin had a fair bit of time off as she needed to build her strength up slowly. The school let her have work at home and she went in for a bit if she could. In my experience it doesn't last forever although can always come back. I would talk to the doctor and school about her options.