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!

Thanks CD! Will email her.

Feeling miserable this morning. Poor DD had a bad night and feeling very very dizzy and tired (more so than usual)! Over the last couple of days I thought she was brightening up a bit but it doesn't seem to last.Sometimes it is so hard to keep positive especially when she asks why this is happening to her and when is she going to get better. I know that a lot of people have far worse things to cope with, but although this illness isn't life-threatening it certainly is life-destroying.

I did speak to someone yesterday who recommended a local homeopath so I will probably arrange an appointment there.

Thanks for that bit if information about year 9 Optimistic, I think you're right and we will investigate home tutoring when DD is well enough. We have also taken her out of classes such as music, art, PSHE and games like your DD, the sad thing is though that our DD loves sport and music. School have been very good and are not putting any pressure on at all, they simply say to concentrate on getting better.

Big hugs. I know just how you feel. Try to do something for yoourself today even if it's only a quick coffee in town or a friend to pop in. It helps. I know i've said this before but it helps to view this illness as a cloak .Your DD is still underneath it.Tell her she WILL get better. Tell her not to worry about school. Is she quite bright and able to do most of her work?? It amazes us how much our DD seems to have picked up on the way! DD school have sent units of work for her to do at home in the core subs. Even if she doesn't want to your DD will feel better about work if she does a bit and so will you if you help her! DD and I did 3 chapters of her french over hol - that was hilarious as my french is *p! When she went back in she was ahead!! They did an exercise we did at home.! Would you like me to give you some websites that she could go on.?
Try to keep it all together and start again tomorrow.xxx

Thanks for that optimistic. Today we are taking DD to see a therapist to try to help with the emotional side of all this, and I have booked a session with the homeopath for next Friday. I think it helps when I feel I am doing something constructive instead of the frustation of thinking nothing can be done.

It is fortunate that I have two daughters who really get on well together. When DD1 gets back from school she goes straight into DD2's bedroom and tells her all that's been happening. She even takes her homework into DD2's room and does it in there to keep her company.

That's great 21again. I absolutely agree with you that it's better to do something. You feel you are getting somewhere then. My DD only has 2 pesky brothers so not same as your DD. It was great to see her messing around with them yesterday as she had a good day. Just about to wake her so fingers crossed...... Have a good day.

The session yesterday ended with DD in floods of tears and being told in the nicest possible way that she was depressed and possibly doesn't have CFS but that depression can give the same symptoms. CBT has been recommended which I do think will be beneficial but as far as I am concerned this damned illness is enough to make anyone depressed. We will get a second opinion as far as that is concerned, but I have to say DD did brighten up considerably last night. Maybe it was the relief of getting some of the emotions out.

She has been asked to keep a diary of how she is feeling, which may also help. We will certainly still go ahead with the homeopathic treatment and also wait to see Dr Crawley.

How is your DD Optimistic? Hope whe is still making progress.

21again, am so sorry about your experience with DDs therapy. Not helpful comments really as it is hard to keep the faith anyway! My DD is having Humans Givens therapy which can be described as 'enhanced CBT' . I really like the ideas within it. Google 'Human givens' and see what you think. Am glad she is feeling brighter. I'm sure getting it all out does help. My DD has kept a lot bottled up but is much better at talking about it now. Dr Crawley will at least give you a proper diagnosis written down.
My DD has had a mixed week. main problem is help lack of sleep which then gives her worse headache, nausea bone pain etc etc. She's only managed one day at school . Am still waiting to see about today...
Does your DD want to go to school or is she panicking and feeling overwhelmed by the prospect of catching up/jumping in again?

Another thought..Isn't physical health totally bound up with emotional health?? It's difficult to know which comes first and in a sense, does it matter? What does everyone else think? Sorry to be hogging this thread.

As you say it seems a bit chicken and egg. However, ME has been classified as a neurological illness not a psychological one but this change has come after many years. Many medical professionals still believe it is in the head, and imo this will take a long time to change. Of course, there are psychological factors, but it is not a mental illness. Imagine how you would feel if you suddenly (at a time of your life when you should be doing lots of fun stuff) could hardly get out of bed, your school work suddenly seemed to get a lot harder and everything hurt. My DD is now very anxious whereas she wasnt before. Dr Crawley will do some mood/anxiety/mental state questionnaires and if your gp uses choose and book, they are required to see you within 5 weeks of receipt of the referral being received.

Yes I agree. I do think many professionals now recognise that CFS/ME is a neurological condition esp since NICE have given it status (or whatever!). But.. still think it needs an holistic approach in that the emotional factors need to be addressed and not necessarily with medication. That was all I was trying to say.Is your DD going to be able to have ongoing help from Dr Crawley? As we are out of her area we can't which is a shame. As she said to us she can't take on the whole country. Sounds like your DD has been much, much worse than 0ur DD Chocoholic, so I really feel for you. Hope you are having a good week

Just typed a long message and suddenly it all disappeared from the screen and can't remember half of what was written!

Anyway, I do think that the symptoms are causing any depression and not the other way round. DD has never had any signs before this illness took hold and she really does want to return to school. She has a good set of friends but I think the reality is that when she does go back she simply can't handle the pressure now and her body just seems to shut down. It is going to be tiny steps at a time now.

Like you optimistic we do not live in the Bath area but Dr Crawley has said that she will forward all relevant details to our GP and paediatrician when she has assessed DD.

Choc and optimistic I hope your DDs are coping and not feeling too bad. Someone said to me today that every cloud has a silver lining, I just wish I knew what that was right now. I am sure that one day we will look back on this time and it will be like a bad dream.

Parachutes thankyou for the information on the websites, they do look very helpful. I am sorry about your DS and hope that you are seeing some signs of improvement.

Hi Optimistic and TwentyOne - DD has been trying on clothes tonight as we have friends coming round tomorrow night, and complaining she doesnt have a thing to wear (which she doesnt having spent most of the last year in pyjamas!). Like both of you we dont live in or near Bath. We have encountered a further problem in that DD falls down the hole of being too old for local paediatric services (inspite of Dr Crawley trying to persuade them otherwise) and too young for the adult ME service. CAMHS was offered as an alternative and they did do a home assessment. It was clear that, although they were very nice, they had very little idea about ME and the visit alone took DD 2 weeks to recover from, she got in such a state about it, so we decided it was not worth pursuing. So sorry if I got a bit over sensitive on the mental health thing Optimistic! Hope you both have a good weekend and hope your girls are as well as possible.

Great to hear about your daughter Choc. Trying on clothes is brilliant and the fact that she has the energy to complain and care about what she will wear must be such a welcome sign. It's when they just lay there and don't even have the energy to talk to you that is so awful. A couple of DDs friends phoned her last night and that cheers her up no end, it is so isolating and I find that I spend so much more time with her. For a while I stopped going to my keep fit class because I felt guilty about the fact that I could jump around while my 13 year olsd couldn't, does that make sense?

Yes it does Twenty One, I feel guilty just popping out to the shops for an hour, cos I know she can't but wants to. The plus side, I think, is we do get on pretty well and we have some very silly giggly times. Sometimes we finish each others sentences, then she comments that we are spending far too much time together (which is true of course).

Hi choc and 21again. Like you, I feel guilty about doing things for myself but also that I seem to spend so much time sitting around!!On the other hand my DD has said she feels better about it if I 'do stuff'. I just wish I had a crystal ball to see where it all ends then I know I would cope better.
Have a good weekend - the pressure's off for 2 days - I really must get up

DD came into kitchen last night and helped weigh out the ingredients for a cake! It doesn't sound much but wow it was good to see. Some of the old sparkle is slowly starting to appear but it is a very gradual process. Funny how quickly she can relapse, in that she suddenly feels dizzy and the fatigue sets in very soon after that yet it is now taking such a long time to recover.

Hope your DDs are doing well and enjoying the weekend.

DD in good form this weekend. Acupuncture yesterday was like putting jump leads on her!! Just trying to make sure she doesn't overdo it today so that tomorrow she's wrecked. Fingers crossed she sleeps well tonight!It's great to see her in such great spirits - I feel soooo mean when I stop her to make her rest etc. Have you tried acupuncture, 21again?

No but we are trying the homeopath on Friday. Acupuncture does sound as if it is helping your DD and it will be something else to try. How did you find your acupuncturist - was it someone recommended to you?

So pleased your DD is feeling good, doesn't it feel like a huge weight has been lifted when they start to feel better. I think that the trouble is knowing where to draw the line so that they don't relapse again. We are learning not to be complacent now and know that very small things can cause a setback.

21again - still on that learning curve.
Acupuncture - we found a very good chinese acupuncturist through personal recommendation. She is lovely with my DD and always very positive. It took a while to persuade DD to go but she finds it very theraputic and always sleeps for a good 30 mins. I know I sound like I am throwing everything at this but I also feel better if I am being proactive. Have a good day. It's lovely to chat with you. Funny tho - I am beginning to build up a picture of what eveyone looks like on this thread are you?

How long has your DD been having acupuncture Optimistic, just curious to see what sort of effect it has had and how long it took to kick in. My DH is against trying too many different therapies at the same time as we won't know which if any is working. I suppose it makes sense in a way because as well as helping, some may be having a negative effect and we wouldn't know which.

Sometimes it is hard to know what to do for the best but we mustn't lose heart and have to stay positive. The first herbalist we saw practised Chinese medicine and offered acupuncture but DD didn't want to try it. She may change her mind now as it was early days then and her symptoms were not as severe or prolonged at that time.

Hope everyone on here is well and DCs are improving. It is just great to have someone to talk to who understands just what this is like

Glad to hear both your girls are doing well. DD was very tired yesterday after us having a house full of people on Saturday. Personally I think she should have taken a bit more time out while they were here, but she didnt want to miss anything of course. She is still tired today, but seems a bit less so. I just hope it doesnt get worse than that. She did have a good time though. I'm interested to hear about the various alternative therapies. I know someone who's daughter has improved a lot through the Perrin Technique (based on osteopathy) - the book certainly makes an interesting read. I'm a bit frightened to rock the boat at the moment and as DD isnt out and about yet, I think it just makes sense to bear these things in mind to help her on her way in the future. I know what you mean about having a picture of what people look like ..yes I do ..but I'm usually totally wrong on these things!

Hi 21again and choc and everyone else on the thread. I know what your DH means, 21again. It depends what your DDs worst symptoms are. My DDs have been mainly headache that no painkillers touch, bad nausea and lately bone pain in her legs and arms. Initially we did the acupuncture to relieve her of her headaches. What we found is that she could go in with a headache that had lasted 4/5 days and come out pain free! She has a session once a week and twice when she is really bad, however not to put too fine a point on it her therapist is chinese and I think that is very important as it has been part of her culture. My BIL who is a GP and can do acupuncture was most insistent that she saw a chinese practioner!!The acupuncture doesn't necessarily last but it relieves symptoms and the 'cupping' therapy that she has for 5 mins first is supposed to boost energy but i'm not sure about that. Apart from that she has seen the HG counsellor twice and will see her as and when. We try to remember iron tabs and of course she has just started the melatonin. But that's it. I think as long as you check with each form of therapy if it affects one of the others you're OK. Also I regard it as a toolkit!
Sorry it's such a long post. Not surprised choc that you don't want to rock boat and I'm sure your get together improved your DDs spirits enormously. Glad there wasn't too much payback.

Choc - I hope your DD isn't suffering too much. It is difficult to stop them from doing things sometimes when they miss out on so much, but it's amazing how you do accept a situation after a while. I suppose it's a learning curve and the longer something goes on the more accepting you become of that situation. A year ago I couldn't have envisaged all of this but now I don't really bat an eyelid at the amount of school that DD is missing, and I guess it must be the same for our DDs as well in that they deal with missing out because they are used to it happening. Am I making sense?

Last night DD finally seemed to have turned the corner and told us she felt she was improving. It is almost like a veil being lifted and you can see her improving steadily, just hope it has continued overnight. We have worked out a timetable this week for her which involves waking her up at ten oclock if she hasn't already woken by then, she must come down for meals and spend some time downstairs - simply to lay on the settee and have a change of scenery. She seems to want to retreat into her bedroom which she looks on as some kind of sanctuary and I do understand that she may find it comforting there.

I will also try to persuade her to come out in the car to pick up DD1 if she feels up to it. Some fresh air must be a little bit of a tonic, and we may see some of her friends. She needn't get out of the car but I am hoping to just give her something to look forward to - but only if she feels that she can. I also thought she may like to chose some new bed linen, not only to brighten up her bedroom, but to change the appearance a bit. Just little things to give her a boast.

We are going to meet with school either at the end of this week or beginning of next week so we have to think carefully about this. They have been marvellous so far and I don't have any reason to think this will change. Another mum at the school has a DD with a different illness but still missing a lot of lessons and she has agreed that school have been very supportive. We are very lucky there and I know from reading posts on a few other forums that not all schools are so helpful.

Interesting that your BIL insisted on a chinese practitioner Optimistic, did he say why?

I do hope our DDs all keep improving and if any of the others who posted earlier on this thread are still reading, it would be great to hear from you and I hope your DCs are OK

Hi 21again. In answer to your question I think he feels that the chinese are steeped in their form of meds and that western practitioners can't possibly have same intuition maybe about something that they haven't grown up with and also that the training is a bit quick, but before everyone comes down on me that was his view and we decided to accept it. Also a physio I knew felt she wouldn't have enough knowledge/experience to treat something so difficult even though she was a trained acupuncturist too.
By the way I think all your ideas sound lovely and you sound very positive. Always good to have a plan
Hi choc and all on the thread. Post soon

DD had a good day yesterday and is pretty lively and bouncy today. Anyone seeing her would say she should be at school, but now is the time to be careful and to try to persuade her to be sensible. The problem is knowing where to draw the line - it is trial and error unfortunately.

I suppose we do know that what she has tried to do in the past hasn't worked and therefore we have to slow her down even more. Going into school late and finishing early, no sport, and perhaps trying every other day at first is what we are thinking. She can go and have a lay down at school if needed, I just don't know if even this will be too much.

Choc and Optimistic hope your DDs are OK.

Strangely enough we had a plumber in today to do some work and he told me his 17 year old daughter has been struggling with glandular fever for a while now. At least I was able to tell him not to let her push herself too quickly and to give herself time to recover!