Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

Has anyone else got a child with CFS/ME? I'd like to set up a support group here.

(8 Posts)
Amapoleon Tue 06-May-14 20:05:34

Hi, I'm sorry I started this thread and ran, dd has been really unwell and i've had a bit of a wobble about it all and couldn't face it. I really appreciate your replies and hope your children are as well as they can be. I have an appointment in a couple of weeks with the paediatrician with the hope of being referred to the UK and i'm starting to look into home ed as the school aren't being very helpful. I would like dd to stay in school but she is nowhere near ready to go back and i'm worried about how much she is missing, as she has been off mostly since October.

cestlavielife Tue 01-Apr-14 12:26:45

hi amapoleon.
my dd just turned 14. she has been diagnosed with chronic migraine disorder by the neurologist - she began getting nausea headaches in 2012 and this continued from summer term thru to the autumn term; she underwent many tests; found a structural issue in her brain (heterotopia) but isn't clear if this is related or not (I think it probably is). she had also a sort of CFS diagnosis as well one point.
she had to drop out of school then attended a small tutor group thru 2012-2013 - around two hours per day three days per week

early 2013 neurologist prescribed proponalol (beta blocker) as a migraine preventer and that has definitely helped as the "attacks" seem to last less days.
then started attending local hospital school, building to five days per week as day pupil. she is now transitioning to mainstream local school - at the moment she on a timetable whereby she starts 09.50 (second lesson) but it's tough socially integrating and she having about one day a week she doesn't make it in. she gets headache, nausea, feels drained...
she has a lot of nausea and we yet to find good drug for that.

we are in London uk.
happy to talk more - use pm button

Amapoleon Mon 31-Mar-14 20:40:27

bump

Amapoleon Wed 26-Mar-14 20:54:29

Hi, sorry it has taken me a while to get back to this post. Thanks all for posting. My dd is 13 and has suffered recurring glandular fever since she was 3, normally she has a period of fatigue or feeling ill, if she has really over done it or there are lots of bugs around. She normally has a few days off school and then is fine again. This time however it has progressed to CFS, she has been ill on and off for the last year but has been consistently ill since last October. She has recently started back at school for 2 hours per day but she hasn't managed a whole week yet.

Last week she crashed and didn't manage to go in at all. She is mainly being seen by the physio , she sees her weekly and she is very good, my daughter trusts her. The treatment for want of a better word seems mainly to be getting her back in to a routine, learning to pace herself and luckily a bit of time is added in for her to have friends visit or if she is having a good week a trip to the cinema, she has managed this once.

I just feel so sorry for her, it is an isolating illness and she is at an age where she should be having fun. She is very good about it and thankfully isn't depressed. I , however feel like I am on a roller coaster, I have cut work down to a minimum. I think what I find hard is that we rarely do anything as a family together. We also have a 7 year old ds, so we are trying to make sure that he is leading his normal life as much as possible.

My daughter's main symptom other than is almost constant nausea, she was having blinding headaches too, although they have eased off and she is only having them sporadically. She has had lots of blood tests, (not Lymes) 2 mris but nothing conclusive except to say she has had glandular fever and Epstein Barr. I just wish there was something I could do to make it all right.

VIWarshawski Sat 22-Mar-14 15:31:59

My 16 yo DD fell ill in September, following what looked exactly like glandular fever, though she tested negative twice, she was tentatively diagnosed in November and now has a firm diagnosis of CFS. She has been in school for 3 days and a few hours this year, but is hoping to take 6 GCSEs (down from 11) this summer, with some help from school, a very little from the LEA out of school service, a private tutor and me. The exams may yet be beyond her, but continuing to study when she can gives her a focus and keeps her positive.

Health provision has been similarly piecemeal; initial GP treatment (signed off school to rest), swift referral to paed, tests run and re-run - all impeccable, but the diagnosis was followed with 'the NHS doesn't deal with this very well,' from both the paed and the GP.

What has helped/possibly helped DD so far:

- counselling/CBT, which we arranged privately (I've also found the counsellor a useful source of support and advice).

- Amitriptyline has helped a little with chronic headache and insomnia (I asked the GP for this; it wasn't offered, but he was happy to prescribe).

- a weekly massage helps relieve muscle pain and insomnia - the masseuse also does reflexology, aromatherapy, etc. and as long as DD is getting the very direct beneficial effect of the massage, I'm happy for her to try other therapies and she always comes away relaxed and fragrant at least.

- NHS physio - slow to get going and pretty infrequent and I get the impression that the physio is learning as she goes along, but she is making a great effort to do so and is advising on pacing and gentle exercise. DD is pretty high-octane by nature, so there's little danger of her being pushed into doing too much; the focus so far has been on baselining to find a level of activity that DD can sustain (terribly low, but she's starting to accept the reality), before attempting to build up from there.

6 months in, I feel we've made progress in that we're beginning to learn what DD can and can't do, and getting our heads around it all. DH and I are hanging on to our jobs, which we need to do if we're going to continue to fund most of the treatment and some of the education. We have a lot of support from friends and DD, though she can't socialise for long at a time, still has a few good friends in regular contact.

It's a bloody nightmare though.

duchesse Sat 22-Mar-14 13:01:25

Any chance he could have picked up Lyme disease? A paediatrician we know thinks many cases of ME are attributable to Lyme.

I am sorry for you and your son- I hope he starts to get better soon.

FerrisBueller1972 Sat 22-Mar-14 12:53:24

My son was diagnosed with this on Thursday. I am still getting my head round it tbh.

I did post on here asking if there was a link or running thread for support but not seen any response.

How old is your child? My ds is 8.

I know how you feel though, its hard!

Amapoleon Fri 21-Mar-14 23:41:59

I live outside the UK so don't have access to support groups etc. I would really like to talk to other parents, discuss experiences, things you have tried, which have helped and to be able to moan and feel a bit sorry for myself with people who understand what we are going through. Thanks.

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