talkhealth forums

My daughter age 8 was diagnosed this spring and has been doing the coloured charts etc. her original baseline was set at 4 hours but we have been increasing it by 15 mins every 2 weeks. We didn't increase some weeks as she had seemed to boom and bust. If she hasn't badly boom and busted is she ok to increase every 2 weeks or does she need to be really stable in how she is and with sleeping etc before increasing . Also she very regularly goes over the allocated red time, mostly due to emotional reasons being angry and upset, is this unavoidable or if we have a few bad weeks on that front should we just keep at the same level until things calm down a bit. Thank you

I think it is really tricky in practice to stick to the allocated red time especially for an 8 year old. It sounds like you have a sensible approach and if your daughter's symptoms are stabilising after a period of 2 weeks at a certain level I would look to increase by 10%
Sleep pattern is important to ensure a set going to bed time and waking time.
If after an increase she appears to be boom and bust again then cut back to previous level and wait until she has stabilised again before increasing
Caroline Grayson

AYME (Association for Young People with ME)

08451 23 23 89

http://www.ayme.org.uk

Thank you. It is the sleep that seems to be the hardest thing to regulate, she is on average only having 7 hours sleep which is way below what she needs. We have tried the bedtime routine, she doesn't sleep in the daytime, she does relaxation discs but seems unable to switch off and the lack of sleep leads to more upset and emotional red time the next day.