CFS Struggle to Attend School

[humanoctopus]

Big thanks to all of you who were terrific at hand holding the time of diagnosis.

We have tried to set a routine of attending for about an hour a day of school. Teacher is very supportive and willing to try anything to make his day/week easier.

However, he is getting very stressed about the entire school attendance thing, worries about what other children will say, what he should say to them, etc. It is interfering with his sleep the night before school, etc. Before CFS he was never anxious or worried about school, so it is upsetting to see him so wound up about going in.

He now feels strongly that this level of attendance is futile. He is so entirely tired from this minimal amount of class time too, so its hard to know if it is of any benefit.

Any ideas?

Hi Human Octopus. I've not heard of Nurse Specialists Cat but it sounds a great idea. If you don't have this, you say the teacher is supportive so may be she could have a chat with the class and then reassure your DS that everyone knows and he doesn't have to explain. Of course if he is really getting stressed about the whole thing, the benefit is going to be minimal and you probably need to weigh up the pluses against the minuses here. I think the anxiety is quite often part of the condition, my DD has always been a worrier but since she has been ill she has been hugely anxious with panic attacks at times. Hope things improve.

kind of explains why I've never heard of them .. there is a huge amount of ignorance regarding ME within the medical profession. Many families struggle to get recognition about the problems they face from drs and the like and there are very few specialist children's services. Even then the help can be limited because there is no treatment as such for this condition. Many children with ME are only seen by a paediatrician whose knowledge may be variable.

No Nurse Specialist here.
He has had a good day and is feeling positive (or maybe I am just deluded!), and is going in tomorrow.
Hopefully it will be ok for him. He used to be such a positive about school. Its hard to see him so reluctant to go to school.
I think he would hate the idea of someone 'outing' his condition. He is very private+++ and didn't like the idea of a someone or teacher explaining publicly his CFS.
Thanks to all who posted. I can't believe that I don't know anyone with this condition, what would I do without MN?

That's encouraging Human Octopus. It is so difficult when they don't want everyone knowing about them. Would he accept the teacher just telling the class that the reason he is not at school much at the moment is because he is not well, but that he doesn't want to talk about it. However, teacher could add that she is sure they will want to help him by just being there for him.
I do know of others who have it ...a bit removed, like old friend's sister's daughter. She was very encouraging in the early stages and her DD is now recovered and at medical school. What I find makes me want to scream is when you are talking to people you don't know well and going through the how old are your children thing. The conversation always seems to go along the lines of someone they know/know of had it and they did something and they got over it. I know they mean well, but at the same time it sometimes feels like everyone knows how to make it go away and why haven't you.

AYME have a parents support forum btw if you're interested. You may find you have a local ME group although they will be people of all ages.