Chronic Fatigue in teenage daughter. Experience anyone?

[twentyoneagain]

Dd2 was diagnosed with CFS earlier this year and had a bad six months. After a restful Summer she seemed so much better and started school in September full of enthusiasm and hope. I guess it's all been too much and she now seems to be falling by the wayside again.

I know the only answer is rest and there is no quick and easy way to deal with it. Just wondered if anyone else has any experience of this with teenagers and perhaps can give me some tips.

Dd2 is 13 and it is so hard for her having to miss out on such a lot of school, not to mention the social side of being a teenager and being with friends. It would probably help just to talk!

Hi 21again. Hi choc.
I'm so glad your DD is feeling fine. She probably felt upset and frustrated at the time. As you know I am in no doubt that my DD is also fine in herself but I want her to be in the best shape emotionally as possible and I think she has found talking to someone else on a fortnightly or so basis very helpful and quite interesting We are going to see Jo Dunbar tomorrow and I just hope the weather picks up as we are about an hour away. DD not well enough for school this morning - she felt v. tired and headachy but not as bad as she has felt, so we agreed that she should go in for last lesson. Fingers crossed....
Post back soon. I look forward to reading this thread every day - it really helps!!

Hi Optimistic I really hope your DD is well enough to go into school this afternoon. DD and myself will be thinking of you both. Good luck with Jo Dunbar tomorrow, she certainly looks very good and you are fortunate to live relatively close to her. She gets good reviews on this thread - what a help Mumsnet has been with the support and information people give to each other. It has helped me enormously to talk on here, especially to others experiencing the same problems

DD is going to do some school work this afternoon just for an hour, I don't think the idea is to just sit around until she next goes in to school (next Tuesday), although she seems perfectly happy at the moment!

Let us know how DD gets on, fingers crossed.

No luck.Just too headachy..In bed and looking very pale.Will try again tomorrow for a couple of hours.Good luck with the paed.Schoolwork a good idea. It will make her feel more in control.

Not sure what happened, I posted earlier today but no sign of the post now, I suppose I didn't log on properly.

Optimistic I do hope everything went well today and that DD got to school and had a good session with Jo Dunbar. Sorry she wasn't good yesterday.

Paed said we are doing everything right at the moment re pacing and CBT and DD was very upbeat after the therapy today. She didn't want to go and was very anti beforehand but the therapist she saw was really nice and quite young, someone she felt very comfortable with. DH and I went in with her for the first half and then left her with him for the second. DD seems much more in favour now but will be seeing someone else on Monday. We want her to choose who she sees and to feel that she has some control over some of this.

Hope to hear some good news from you soon.

DD did get to school - hurray! Went for 3 lessons and was good. We went to see Jo Dunbar who was lovely and questioned us for an hour before prescribing DD with a foul looking liquid that she said tasted disgusting and I thought was OK (I like liquorice, she hates it)but DD will do anything to feel better. She endorsed pacing and interestingly warned DD about not going for it when she felt symptoms lifting. She said it would take a while but we are hopeful!We battled our way back along M25 in horrendous sleet/snow.
I'm so glad your DD is pro therapy - I really feel it helps and incidentally Dr Crawley told us that it was crucial that our DD had someone not emotionally attached to talk to.
It seems our DDs are very similar go-getters who have literally been 'rugby-tackled' by this wretched illness. I feel very proud to have a 13 year old who is showing the most amazing poise, stoicism and maturity in dealing with this. I keep telling her she is going to end up with life skills that her peers will have to aquire at some time in their lives and that no one but no one gets away scot free in this life!!!
Here endeth the first lesson

Optimistic that is such good news and I am so pleased for your DD. Unfortunately those herbal tinctures always taste vile in my experience.

You are right that our two DDs sound very similar in lots of ways and when I spoke to a herbalist last year and told her DDs history she astonishingly said "if I had a pound for every time I have heard that...". Obviously certain conditions need to be in place for the CFS to take hold but it is usually the high achievers. DD was also in the midst of a huge growth spurt - we know that her rate of growth was literally off the scale and she went from being one of the smallest in her year to one of the tallest. Was her body using so much energy growing that there was nothing left to fight with? Interestingly - on that note - I heard of a boy locally who has not been growing and his doctors have advised that he should be taken off sport so that his body can use the energy needed to grow.

Have a good restful weekend, eldest DD is extremely busy with sport and parties at the moment. She seems to have too much energy and I want to tell her to slow down, this experience certainly makes you extra careful!

Post soon, it's always great to hear from you.

Optimistic hope everything is alright and that DD not ill.

DD is still ok and we invited some of her friends to lunch yesterday which cheered her up no end. She seems to have lost some confidence when it comes to contacting them, thinking that they won't want to see her, but I have to say they are a good bunch of girls and we are very lucky in that respect.

Saw second therapist today but DD made it very clear that she didn't think she needed to see him and he was happy to accept that. Fortunately she did respond favourably to the first therapist last week so we will continue down that road for now.

Hope to hear from you soon.

21again - all good here - will post properly later after train run!!

How are you both 21again? DD didn't make school yesterday but went today and DH and I had followup meeting with Head of Minischool and an assistant head. It was v. positive although they are going to refer her for home tuition for Y10. This means we can do school and home but that she gets more education. (I think from what they were saying it goes via the EWO but that it is tailored to DDs needs.) We hadn't realised that all GCSE coursework now has to be supervised and so that means done in school ( or by tuition service)so nothing she did at home could count. Interesting....
Am so glad your DD had a lovely lunch with her friends. I know what you mean about confidence with friends. my DD picks and chooses much more now and I'm happy with that. I think that if they are true friends they understand. I alos know that my DD just doesn't want to discuss her illness with her friends she just wants to have fun with them etc.
It's great that she's decided which therapist she is seeing and indeed if she thinks she needs it . Just a light touch to keep all the demons at bay!!!!
Just got to sort out DS2 who has a horrible cold/sore throat etc.
Post soon.

Glad to hear your DD got to school yesterday and hope she is still doing well. DD went to school Tuesday and Wednesday and is at home today, then back on Friday for one day before half term. She certainly seems to be coping well at the moment, although how she manages to lose so many things is beyond me! By Tuesday evening she had lost her bag and several books, but the interesting thing is that before she got CFS she would have been worried about this whereas now she couldn't care less. I think an important lesson has been learned here!

CBT session this afternoon and an appointment with the homeopath this evening, so still quite a busy day for DD, but we are all looking forward to half term especially DD1 who is doing GCSEs this year. I didn't know that about the coursework and I thought eldest DD had been doing some at home but I don't look at it so can't be sure.

Have a good day and post soon.

Sounds like you are all going great guns!! I can't wait for half term either. My DS1 is also doing GCSEs this year and I did wonder why he never seems to have any homework!! DD is not in school today, just slept so badly that all symptoms have increased. She's up though and about to do an hour's work before she is off to HG therapy!
I put a tentative toe in the Lighning Process pool today. The chat at school yesterday has galvanised me into action!I spoke to a friend of a friend whose DD did it aged 14 and she said it has worked!! So i have rung up the most local practitioner who is going to call me back tonight. Asked DD what she thought and she is all for it having been set against it last week. I think she is willing to try anything.Will let you know how it goes.

Optimistic sorry to hear your DD had a bad night and I do hope she picks up soon.

I spoke to DH fairly recently about lightning and asked him to comsider it if DD not improving by Easter. He did agree to this so we have it in reserve, I spoke to my sister's friend who has done the process as I was interested to know whether they consider CFS to be psychological. She replied that it was not really considered psychological but about how the brain works. She explained that the body is attacked by a virus and the immune system is suppressed. There is no blame connected with getting ill but the brain is very clever. The example she gave was of a baby learning to reach out and grab something. It gets better and better at it and the messages from the brain get faster and faster until no thinking is necessary, the brain knows what to do almost before the action has been decided. The brain gets vey used to these "pathways" and this is precisely how the CFS symptoms are kept going. We have to change these pathways and that is where lightning comes in. She is certainly still very well and is using lightning to tackle some other problems she has had and is getting good results.

Hope everything goes well and let me know what the practitioner has to say. Look forward to hearing from you.

All you say makes perfect sense to me. Very excitingly the LP lady rang and is running a course at the beginning of march. We have just filled in the 9 page forms and the next step is that DD is assessed to see if she is ready to do it. If she is we can go ahead!! As a teacher we have been learning loads about how neurological pathways can reconfigure etc. and I actually think it does fit in with my theories that it is a holistic approach that is needed. I also do think you can get into unhelpful learned behaviour when you have been ill for so long such as lying in bed etc and these need challenging
Go onto lighningprocess.com and Phil Parker explains that he does think CFS/ME is fundamentally a real, physical illness but that it has a psychological impact.

Optimistic when your DD saw Dr Crawley, how ill was she and what sort of pacing programme was she put on? I seem to remember you posting somewhere that it seemed to work but can't find this atm. Also what do you think caused your DD to relapse later last year? Hope you don't mind me asking but DH is interested .

The more I think about lightning the more convinced I am that it is the right way to go and I really hope your DD can go ahead with it.

At the moment DD is still good and has done three short days at school this week. We now have half term in front of us and we intend her to continue at this pace for one or two weeks when she goes back. All being well we can then look at increasing this slightly for the following two weeks. I almost hesitate to make too many plans but we do have to be positive.

I took DD to see the homeopath yesterday and she is really pleased with the progress. I mentioned that since last Friday night DD has slept really well - before that she wasn't getting a good night's sleep at all, she took ages to get to sleep and always woke up again in the night. Homeopath said that hopefully the remedies are working and prescribed something else to help her sleep even more deeply. DD has stopped dreaming - or at least isn't remembering dreaming - and says that if she does wake in the night she just rolls over and goes back to sleep. Her dreams had been very vivid and often scary, I think this is a common side effect of CFS.

I hope you all have a good half term and that your DD is well. Post soon.

Hi 21again. Of course I don't mind you asking!
When we saw Dr Crawley DD was only managing 50 per cent of school. We said to her that we felt guilty as she was only mildly affected. She said any child doing that little school was not a normal healthy child so not to worry. She went through DDs symptoms and detailed how much time she could spend doing various things during the day e.g. walking, TV . She then asked DD what she most wanted to achieve and DD said full time school.She then halved what DD said she could do and explained pacing prog. Basically it's a chart that you colour in hour by hour. Red for high level brain activity, yellow for low level, green for rest, blue for sleep. She also said to make cards with 10 mins on each to post. It is a very strict programme but she promised DD her life back. You increase 10 per cent after 2 weeks once you have found your mbase level.
DD did really well on it . Shingles and hayfever meant she had a slight set back in summer. She had a great summer and felt well. We probably made the mistake of allowing her to start Sept and do full time school plus train etc as if she was recovered. She totally crashed in Nov with new symptoms exacerbated by cold weather etc. We didn't recognise it as a relapse and we have only in last 2 weeks persuaded her to go back to pacing which is working. However I think the LP is the total opposite of this system so I think you will have to make a choice. Also your DD will be assessed for her readiness for LP by the practitioner.
I'm very impressed with the homeopathy working regarding the sleep.

keep in touch during half term and have a good one

Dwardle - we're over here

Hi I have found you - thank you! Will read the threads and then write again.

Hi Optimistic we went to London on Sunday and are now back home. It was a bit of a last minute decision and hence no Mumsnet for a few days. We have cancelled so many things in the past due to CFS that we tend not to make long term plans!

Hope you are having a good half term. DD is still well and coped with being away perfectly. It doesn't seem to be the physical strain that gets to her - more the mental pressure that causes the relapses (or a combination of the two).

A couple of different people have mentioned the benefits of sunshine on an illness like this. Certainly vitamin D seems to be of value here and it is interesting that both our DDs crashed again at the end of last year after a good Summer. It certainly is a good enough reason to get away don't you think?.

Look forward to hearing from you - and from Dwardle (welcome).

Just bumping so thread doesn't get lost!

Hi twentyone and dwardle - where are you?- been away in beautiful Suffolk for a few days for some sea air. Will post properly tomorrow

Hi Optimistic - glad you have been away and hope DD stayed well throughout.

We had a good half term and DD has gone back today (started at break this morning), she has also been doing some catch up at home - but not too much. So far so good.

Interesting last week that DD was invited to a sleep over with friends and decided not to go although we had said maybe go for the evening only. She was perfectly happy not to go and seems to be treating this now with much more maturity and sense than ever before. She seems to have developed the confidence to say no and not worry because she is missing out.

Look forward to hearing from you and from Dwardle if she's still around.

Hi 21again. DD was much better until Weds when she came down with the boys' cough/cold/sore throat. She feels her CFS symptoms are lifting though and I hope to get her in for her 2 lessons tomorrow. LP lady said that it often works like that- ie change is like a snowball effect although I also agree with Jo Dunbar who said enjoy feeling better but don't go wild!! Everything seems to conflict and we're in a mixed place at the moment until we do lightning process.Day off for all today.. I'm glad to hear your DD has been well and sensible - good for her!!

Not sure my last post made sense! Hope it did

Optimistic I do hope your DD is OK and managed to get in to school yesterday. I think one of the very worrying aspects of CFS is whether another viral infection will trigger off worse symptoms. I know that DD was doing really well last year until she caught a sore throat in October and it was downhill from then on. We have learned that she will take longer than normal to recover from a virus at the moment so do take care with your DD. Sorry, I don't mean to sound bossy and I'm sure you know this anyway .

DH had a chat with DD's therapist yesterday and he doesn't think he needs to see her for five or six weeks - unless she has a relapse when he will see her straight away. DD is thrilled that she needn't see him unless she is ill and for her that is an incentive to stay well and take care of herself. DH said he thought it is as if the body has found a safety release valve and whenever something stressful occurs the body just shuts down with the CF symptoms which for the brain have become normal. Just like LP teaches!! The therapist was in total agreement and also pointed out that often the shock of having to have therapy is enough of a wake up call to cause a change in these patterns.

Therapist stressed that school work must be increased slowly as we are doing, and so we will have to see, but it does indicate to me that maybe DD would respond favourably to LP if needed - what do you think?

DD went in to school on Monday and is due to go back in today and again on Friday. She seems to be coping well with this at the moment and we should hopefully be able to increase a little next week.

One thing that occured to me yesterday was that we are rapidly approaching the time of year when DD's hayfever starts although maybe the colder winter will delay this a bit. Hoping the homeopath will have some remedies on hand and will discuss this with her on Saturday.

Look forward to hearing from you, it is always great chatting and has been such a relief to talk to someone going through the same (although I wouldn't wish this on anyone).

Hi 21again. No DD didn't get in yesterday or today and we managed to have major bustups in the process. I suppose I was trying to push her without any of the skills she will learn next week on LP. I'm just so tense about the school situation I don't really know why but school have brought things to a head in a way adn I just thought 'surely she could go in for 2 hours!' but evidently not. Your post was eminently sensible as usual and I suppose I am scared she will relapse further.
I'm glad your DD is doing so well you sound like you have found a baseline for her. How are you going to increase it? It would be a lot to increase by another similar day...
Anyway we had acupuncture which has helped and spoke to Jo Dunbar who sent some other herbs!! It's funny but my DD suffers from hayfever too and has had some excema. I'm sure this allergic constitution is part of it! Speak soon . I have really enjoyed our chats too and reading them back wouldn't they make a great book!!