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Original poster

daughter with ME/CFS

16 replies

angielou791417 · 30/09/2013 18:26

Hi everyone I need some help!!! My nine year old has just been diagnosed with ME/CFS and I am waiting for funding to be approved so she can go to a specialist clinic in sheffield, we have been managing ok but now the problems have begun as she is either too exhausted to go to school or too anxious and upset at the though of it. She is supposed to be attending three mornings but due to ilness or appointments she has not been able to go regularly. School have requested she has a tutor and the hospital say they waiting for the funding so I don't know what to do!!! Should I make the difficult decision to take her out of school for now and try homeschool her for a couple of hours a day or do I carry on trying to get her to go??? Don't want to give in to her but also don't want to push her too much! Feel very confused and just wish someone would tell me what to do for the best!!! Any advice would be great x

OP posts:
FavoriteThings · 30/09/2013 21:59

Didnt want this post to go unanswered. I dont really know much, but I think there is a ME national headquarters that you could ring, who are very helpful apparently.

LittleRobots · 30/09/2013 22:04

I'm not at all an expert but I do think you need to be careful about the official "decision" to homeschool. If you daughter is too ill to attend school the LEA I believe ought to help with a tutor service or some form of help at home that you can work around. If you tell them you are homeschooling they won't pursue that.

I've had ME, and found our clinic really helpful in terms of helping to pace activity, although that was an adult clinic hopefully yours will be similarly helpful. In the inital days we were advised to completely pare down activity to things that definitely wouldn't cause us to overexert ourselves. I don't think I'd force her to go if she can't manage it. Is she happy to go in for the 3 mornings if there weren't appointments?

LittleRobots · 30/09/2013 22:07

I also found the local support group helpful, it might be worth seeing if yours can put you in contact with other local parents in similar position.

Floralnomad · 30/09/2013 22:15

My 14 yr old has CFS and has had a tutor for the last 18 months through the Health needs for education service . I would say if your dd is too tired to go into school for the moment then keep her off and phone in sick and wait for them to organise a tutor. I think it varies from area to area but in our case my DDs attendance had to be below 50% and we needed a diagnosis from a consultant to get the Health needs service involved. In your case I would not officially de register and home ed. My dd was more or less off school from October to February before we got any useful help and the tutor started in the April. Good luck .

cestlavielife · 30/09/2013 23:29

Call lea and ask to speak to the person who organises tuition for children with medical needs .
They are obliged to organise something.
www.education.gov.uk/aboutdfe/statutory/g00219676/health-needs-education

Emphasising the anxiety over school and getting CAMHS referral as support for dealing with her illness might prove the best route to getting education out of school
My dd has now been diagnosed with chronic migraine disorder but last year accessed a small tutor group for up to five children up to ten hours per week...fantastic and supportive teacher . she is now at the local hospital school as day out patient still wobbly but building up hours.

Original poster
angielou791417 · 01/10/2013 07:38

Thank soooooooo much everyone I'm very greatful to all the replies and advice. Think I will speak to school again and hopefully her consultant will ring me today. Don't want to officially homeschool her as she will miss the social side and also she will find it impossible to go back but she isn't managing the three mornings so will have to do something! Hospital school or a tutor at a local library would be great as she would be in a new but safe environment and mixing too. Thanx again will look into all your advice x

OP posts:
Original poster
angielou791417 · 01/10/2013 10:52

Have decided to get plenty of school work sent home and three mornings I will go to out library and ellise can do an hours work away from home and in quiet and I will see if she manages the remiaing two mornings at school then we are in some kind of routine while waiting for the referal funding or a tutor,feel like this a kind of plan and a start to getting her to do work everyday again x

OP posts:
Original poster
angielou791417 · 01/10/2013 11:16

Have decided to get plenty of school work sent home and three mornings I will go to out library and ellise can do an hours work away from home and in quiet and I will see if she manages the remiaing two mornings at school then we are in some kind of routine while waiting for the referal funding or a tutor,feel like this a kind of plan and a start to getting her to do work everyday again x

OP posts:
cestlavielife · 01/10/2013 14:04

look at her school timetable and see if she can go in for speciiic "social" lessons like drama or art or music. dont worry too much about academics so long as she is reading a lot at home and maybe doing some maths.

keep calling the lea officer delaing with health needs as once they on board they willl help you liaise with school and organize meetings etc with school to review what is happening and decide on plan for next few weeks.

cestlavielife · 01/10/2013 14:05

dont take her off school roll and dont say you now home schooling her. or you will lose all access.

Original poster
angielou791417 · 01/10/2013 23:11

Thanx for all the help I really appriciate it. Spoken to school and I am meeting the educ(ional welfare officer and the headmistress in three weeks to discuss a referal for a tutor so think may be getting the help we need x its scary when its such a new situation and such a fluctuating ilness its taking a lot of getting used to for us all but we are getting there ! X

OP posts:
whyayepetal · 22/10/2013 22:03

Hi - my DD has ME, so I know what you are going through. I would agree with LittleRobots - pacing really is the key, and plenty of rest in the early stages is really beneficial. You might find the Tymes Trust website useful, and they have a phone line too! Good luck.

CFSKate · 30/10/2013 10:23

www.tymestrust.org/ ask TYMES trust if they know of a good paediatrician in your area.
investinme.org/
voicesfromtheshadowsfilm.co.uk/
Invest in ME facebook

FerrisBueller1972 · 12/03/2014 14:54

Could anyone point me in the right direction to any current support threads about CFS/POST VIRAL in children please? I am much more worried about my son (8) and need some advice!

Thanks in advance

1talia · 18/01/2018 18:00

My DD has home Tutors 4 hours a week but still in-rolled in main school although she doesn't attend any more (dual) best to keep with both as school is helpful for information, homework and exams. DD has to be referred by CAMHs etc. Looking at a special school Monday, if she doesn't go there she will need home schooling again. They have to give a child education for 5 hours a week. Think if you choose home schooling you won't get this.

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