Anyone else with a teenage girl with CFS?

[optimisticmumma]

Would love to talk to anyone in the same boat as me. My DD has had CFS for nearly 2 years now. Having got significantly better over the summer/autumn she has been poorly since Nov and has had sporadic schooling. We have tried so many differen things but at the end of the day nothing seems to work long term. Would appreciate support and any ideas....

[PuzzleRocks]

Bumping for you.

[saint2shoes]

sorry to be thick but what is CFS?

[optimisticmumma]

Chronic Fatigue Syndrome used to be called ME. By the way don't mean to sound so miserable. Just had a bad day and am meeting big guns at her school tomorrow.

[saint2shoes]

thanks, good luck at the school.

[cory]

Lots of hugs! We have had a slightly similar situation as dd has Joint Hypermobility Syndrome (Ehlers Danlos) which also leads to lots of fatigue/pain/low level illness and time missed off school, though not as bad as CFS.

It's miserable- and I expect you are climbing off the walls.

What kind of treatment has she had, do you mind me asking? I know at the rehabilitation clinic dd attended, there were children/teens with CFS (who presumably were getting better) being trained to return to school.

The one thing I found helped at school was being firm and calm and not letting the big guns tell me what my dd's situation was like. Good luck with the meeting!

[optimisticmumma]

Thanks Cory. School have been great but we now have to play it their way. DD is going to try each day and see how she goes. I think it helped her to take some responsibility going today. At the end of the day she has got to keep putting one foot in front of the other. They are being open minded and we meet again in a month. DD has weekly acupuncture which for her has been great. She has only since Nov had bone pain and I wonder if your DD has had success with physio? Also trying human givens system of therapy to deal with emotional fallout! What was the rehab? Was it occupational therapy? So nice to talk to someone else in a similar position. So diff to keep my own identity!

[cory]

Physio has helped dd. CBT helped a bit. Having an occupational therapist look at her school day helped more.Pacing herself carefully is the thing that has helped most of all. That and knowing that there will be setbacks and that she won't be judged for them (unlike at her primary school).

[cory]

Rehab was a mix of physio, CBT and OT. She was an inpatient at the local children's rehabilitation clinic for 5 weeks. It did her a lot of good, not least in seeing that she was not alone.

[optimisticmumma]

Thanks for that. It's hard not throwing everything at it!Sounds like your DD was worse in a way. My DD can operate well at home with no pressure but the imposed timetable of school causes her to feel worse. At least today she heard her Dep head say how wonderful and valued she is!!!!

[cory]

I was going to say that things must be much worse for your dd.

Mine has the kind of fatigue you get from (not constant) pain, but not the awful brain-numbing fatigue that I understand comes from CFS. So even when she is too bad to sit upright she can still read.

I'm glad your dd's school is supportive. My dd had an awful time with her first school, but the secondary school are great.

[optimisticmumma]

Glad secondary school is good. My DD in Year 9 and am very relieved they are being so chilled about her work. Do you mind me asking if your DD is much better now? Has she struggled more in bad weather?

[cory]

Cold weather does affect her, but this winter (touch wood!) has been better than last. The rapid growth spurt she had last year made her worse- joint problems - she's better now that her growing has slowed down.

[optimisticmumma]

Thanks for that. I'm sorry if I appear to be pumping you for info!!
DD managed this am and is back now but in good spirits. Fingers crossed this lasts!!

[cory]

Well done her! Just make sure she is not too shocked by the occasional setback.

[optimisticmumma]

No I know...Yesterday home again! Oh well...

[twentyoneagain]

I have a thirteen year old Year 9 girl who has had CFS for a year now, it started with a flu bug last Xmas and she is now worse than ever.

Optimisticmumma, like your DD , my dd has barely been to school since November - having had a good Summer. Until now she has had some good times when you wouldn't know there was anything wrong with her and I think in September when she went back to school we thought we had got off lightly. Unfortunately a sore throat seemed to set it all off again!

It is an awful time for all of us and seeing her missing out on school and her social life is so hard.

[optimisticmumma]

Am so please you posted twentyoneagain. You sound IDENTICAL to us. My theory is that the really cold weather just about finished her off. Everytime she went to school she came home with col/flu symptoms - and we had really started to believe she had come through. DD did 6 lessons last week and 11 this week. Try not to get too despairing. I feel I have to uncouple myself otherwise feel totally sucked in by it! Lots of hugs . Keep posting!(smile)

[twentyoneagain]

Optimistic - what kind of things have you tried? We saw a herbalist when she was first diagnosed, and her doctor has put her on a graduated exercise programme, but to be honest nothing really seems to work. When she feels good she is bouncy and lively and so the graduated programme goes out of the window (so to speak).

I know what you mean about having to "uncouple yourself", it is so hard watching this happen. DD is a bright girl but is falling behind now at school and we have moved her out of the top streams so that she does not feel under so much pressure. She is starting to worry about falling behind with her work and of course worrying will not help her

I think the worst part for me is feeling so helpless. As a parent if your DCs are not happy then you are not happy. My sister knows someone who recently went through the lightning process and had amazing success with it. Have you heard of this? I have looked at their websites but am not sure if it is the right thing for a thirteen year old.

I will keep posting as it does help to talk about this. Thanks for starting this thread.

[optimisticmumma]

We saw a herbalist too but I don't think that really helped and I was so loathe to make her into some sort of food crank!! We saw the only specialist for adolescents last year. She cost about £350 but it was worth it - Dr Esther Crawley at RHRD Bath - and she put DD on pacing programme. It was like a very strict diet - of time and it did work BUT DD not happy to do same again. I agree with you there is no rhyme or reason one day DD is functioning next not it is SO frustrating. I have 2 DS either side who are having to bring themselves up practically... I would push to see a consultant as teenagers need to hear it from the top so as to speak. You are lucky to have a good GP. Also keep school up to date as it helps. DD is at a grammar school who have been fab so far and are not pushing her but at the same time have told her she ia valued member of the school. At the moment DD is having acupuncture and cuppping from a chinese therapist which really help. She is also seeing a 'human givens' therapist to go through emotional fallout. Have heard of lightning process but like you am not sure4 it is suitable for a teenager. It's in my armoury for later!!! so nice to hear from someone else in same boat. Keep posting. xxx Keep

[twentyoneagain]

We have been seeing a paediatric consultant, he diagnosed the cfs last year. Both he and our GP have been marvellous but cannot offer us much help at the moment. I looked up Dr Esther Crawley and she does seem very good, that may be worth pursuing - thanks for that.

DH and I sat down the other night with last year's diaries and calendars. We established a definite link between the relapses and stressful situations for DD i.e exams, trips away by one or both parents, and even smaller events like being chosen for a team. Both the consultant and the GP agree with us that this seems to be too much of a coincidence and that therefore some kind of therapy is necessary. Will let you know how we get on there!

[optimisticmumma]

Hi 21again thanks for posting. I should say that Dr Crawley doesn't do private practice but has a research foundation and suggests a donation of the amount I said. She said to us that she has never met a lazy child with CFS, that 25 per cent of olympic athletes have it and that pacing is the way through. If you go on the AYME website you can get pacing advice. My DD can't do any PE for now as the recovery is too long. She has come to terms with this, more this year and so is not putting herself under undue stress. We keep saying to her hare and tortoise. She will get there academically in the end. I do think some sort of therapy is crucial as they need an outlet for all the rage/upset etc. but it took a bit of careful suggestion to my DD.I just said to her that research shows that physical illness has emotional fallout and that we need to treat emotinal as well as physical symptoms. Ask your GP to recommend someone.We are off to see another consultant today as Dr Crawley can't have us on her books so to speak as we live in SE.Keep posting....

[optimisticmumma]

21again - am being pathetic with my info. Dr Crawley will see chn but does so in her own time for a donation to her research foundation. She can't obviously see everyone regularly so that is why we could only see her once. She was very reassuring and practical with a good plan. Think that's straight now!!!!

[twentyoneagain]

Hi Optimistic - How was the meeting with the consultant? I hope you came away feeling positive.

We have been in touch with Dr Crawley's secretary and if our GP refers us she will see DD within five weeks. It would be good to talk to someone who is actually an expert on CFS, because although our GP and consultant are very good, their knowledge on the subject is still quite limited. I hope DD will be up to the journey.

How is your DD today? I hope she manages to get to school. Mine has been in bed now for the last ten days and although she is starting to look a bit better, I do think she is beginning to get very down and this will hamper her recovery.

[twentyoneagain]

Just going back over this thread I noticed you said earlier that your DD can operate well at home when there is no pressure but that school seems to trigger a relapse. We have found exactly the same problem - DD is rarely ill during school holidays! Having said that I suppose it's not just the pressure but also the rest they get at that time.

[optimisticmumma]

Hi 21again. When DD is at home in holidays there is no imposed timetable so she pretty much organises herself. We do try to make sure she gets up early though as one of the tips was to make sure she didn't oversleep so that she slept well at night. DD's sleep is very poor at moment and yesterday she was put on melatonin to try to help this.School have tried to accomodate us. She generally starts at 2nd lesson and has dropped art, music and P.E. so that she can use these times to rest, but it's just not the same as home is it? I also think the pressure is off the family too during holiday/weekends. So we all have a nicer time! Sometimes i just think 'Fot God's sake get on with it!' Then I feel really guilty. Missed your earlier thread.
I really think Dr Crawley will help. We stayed overnight in Bath so DD felt a bit better for appointment. We had a very thorough appt yesterday for 50mins!! Being referred to GOSH as it has a CFS/ME service and is nearer to us. We are in SE.More bloods done and the melatonin..
We'll see....