chronic fatigue syndrome

[rddrons]

hi. My teen has had a cfs diagnosis for just over a year now after three previous years of illness. He seems to have hit a wall and is giving up on all advice for sleep patterns, nutrition and pacing. It is a constant battle between us now. He is almost 16. I just want to do the best for him and expect he is trying to exert control over his very challenging life, Any tips on how to help him?.He is under a specialist hospital, but there isn't support for parents as such. He is in school part time and is due to sit gcses next month

My son had Cfs after an illness, was off school and attended part time for months. I found when it was really bad hydrotherapy was a good way to exercise, this allowed him to keep some muscle and be active, it also helped with sleep as a better quality of sleep after. I found celebrating small wins focusing on what he had managed to do rather than what he hadn’t.

@rddrons no advice on this sorry. It must be so frustrating for you. If he’s not taking advice on sleep, what’s he doing instead? If he’s not following the advice on nutrition can you feed him healthy stuff when he’s home with you?

It does sound like he is trying to exert control tbh. Could you have a chat with him about it. If you tell him that you recognise he’s getting older and ask him if he wants to start taking more control himself instead of relying on you do you think it would work?

It is very frustrating. Have decided to mummy him with food especially during GCSE time . Celebrating small wins is good advice. Thank you! I wonder if your son has recovered bbindum

Letting him gradually take ownership of it all is a challenge!

Letting him gradually take ownership of it all is a challenge! I can imagine it is. Letting your teens take more responsibility is always a challenge, I can’t imagine how hard that must be when they have a health problem.

Are you in touch with AYME already? I know my friend found them immensely helpful when her daughter was suffering with this. She missed the best part of 3 years in school, which was very tough, but she is much better now.

My son is still recovering, he is on medication after being diagnosed with additional health problems. He did see the CF team who recommended pacing and nutrition but he found it a bit patronising, “i’m 15, I don’t need a star chart”. I try and let him make his own decisions but I did make him do gentle exercise swim or walk 4 days a week as this helped. He still has days that he can’t get out of bed or days that he has over done it so he’s not fully recovered. I think you doing the right thing exams are really stressful and tiring so favourite food and understanding is important.