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 Positive and I am pleased your DD isn't suffering as a result of being out. How lovely to think she managed to chat to a friend for a while. It will do her the power of good especially as they do tend to feel a bit isolated.

OK I need to talk to Optimistic if she is around. DD has listened to what I have had to say re lightning and I have mentioned it a few times to her, not just since she became ill this week. Her take on all of this is that it sounds as if she is to blame for being ill. I stressed firmly that this is not the case and that she has done so well in her recovery but just needs some help to get over the last few hurdles. Any advice would be greatly appreciated. She certainly is not as bad as in the past although is spending most of the day in bed or on the sofa, and she doesn't have the aches and pains that she used to. She cannot concentrate easily, but is much happier today as her sister is home with her.
We think the stress that may have triggered this are a couple of things at school, but thought she would have been able to cope.

Hope everyone else's DCs are doing well and do keep posting. Where is Nickschick?

Hi all
I think my dd is v similar to 21 again's re attitude to LP. So sorry to hear she has had a slip back.
I gave my dd the LP book ( what a rip off £20) and she has read some. My worry is that she has been taught CBT techniques by her counsellor but am not sure she uses them. As I am not in on sessions, it's hard to tell - and anyway, she is 15 and needs to be in control, not me! Am worried that the same would happen with LP - she would be really keen to start with but would not use the techniques and if I was not sure what they were, how could I support her? What do you think, OM?
SO glad to hear about your progress this week Pos attitude - and glad to hear your dd has had a few positive moments too. Got to go to a rugby presentation now but will be back!

Hi all. I've just read through the last posts and it's difficult to respond as you all know I think LP is great! As far as being blamed for being ill is concerned, where does that come from?? The way we have looked at LP is that it is a practical method for getting better.No-one talks about the CFS/ME. It's why you are there but that's it, no dwelling on it but moving forward in an individual way, looking at beliefs and actions that may be holding you back from being well. The DC are so lacking in confidence in their own physical abilities, they get a bit better but then don't have the tools when they relapse. I don't fear relapses so much now as I know DD knows what to do if it happens. As far as Lp is concerned you only use it when you need it and like everything you have to apply it and know when to do so but that is the same as everything in life isn't it? e.g. I've put on weight, I know what to do and so I have to do it! The difference with LP and CFS/ME is that there is much more riding on following through. I would throroughly recommend attending LP with your DC as then you know exactly what's been said and can be supportive. It's not an onerous system because it's based on fast automation so it's not something you have to consiously think about for very long and because the DC are young and used to a learning environment it is easier for them.
Just for the record, my DD felt it took 6 days to clear her symptoms.
We were asked , 'Is there any reason why you would not be in the 85 per cent success group?' and for DD that was it!!!!!
We just felt, in the end, that there was something out there that was successful with a lot of people and we just couldn't go on any more without giving it a go. It had seemed to us the 'golden bullet' and we just had come to the point where we had to do it. DD was completely fed up with being so ill.
If any of you want to talk privately by email to my DD or me please feel free and we'll work out how to do it. She is already had one email from a 13 year old boy asking what she thought.
Sorry for such a long post . Not sure I've helped at all

By the way - lots of hugs to your DD 21again. I'm so sorry to hear she isn't well again but it's such a good sign that she's only slipped back a bit. Try not to worry too much and here's hoping she picks up quickly!

Thanks OM - that was very helpful
You have really made me think.

Thanks Optimistic - DD is feeling completely better again today, started to pick up last night although she didn't sleep very well. We had another chat today and she has agreed that she will do lightning if she cannot get through to the end of term without relapsing. She is very determined. I would definitely want to accompany her and I think she would be happy for me to do so.

I would say she read the assessment form for LP and picked up on the part about being responsible for applying the process but misinterpreted it as being responsible for your own health - which is partly true - but I think she is thinking a lot more clearly today and is much more receptive.

Thanks everyone for your support, the next few weeks will be a challenge for her but fingers crossed.

Hope for a good week for everyone

I'm so pleased, 21again. She sounds like a very positive, sensible girl and I'm sure if she relapses again she will benefit hugely from LP.
It could be that you and her do one of the residential courses during the holidays when there is no pressure and lots of time to concentrate on doing it.It would be perfect timing. (They do recommend a holiday afterwards anyway which was impossible for us).
My DD told this lad she was asked to email that what she loved about LP was having time with me doing stuff and discussing the issues raised on the course, as before we had 'lost' a bit of our relationship due to me taking on the 'carer' role.
BTW, how is your older DD getting on? I seem to remember that like my DS she is doing her GCSEs! Aargh!

Yes you are right, we are bang in the middle of GCSEs. I have to say that although she was a bit fretful about them a few weeks ago, now that all is under way she is fine and feels everything is going well. She is a good girl and works hard, she really does deserve to do well. How is your DS finding things?

DD has gone into school this morning but is not feeling great - she was completely well yesterday. This is definitely stress related and DH has spoken to the CB therapist and arranged some more sessions starting this week. She has really only spent a short time with the therapist overall and did so well afterwards that maybe this will be enough.

I like the idea of LP during the hols although it is pretty obvious that she will be fine then anyway. I am sure they will find something to work on!! Fingers crossed for today

I spoke too soon, DH has gone in to collect her she cannot cope today. I don't yet know how bad she is but obviously not good. I am going to ring LP!!

What a mess! In nutshell DD is supposed to be taking end of term exams this week (the reason for last week's relapse?) and went in this morning to do so. Some silly teacher sent her to the wrong exam where they obviously didn't have a paper for her. DD burst into tears and was told she obviously wasn't in a fit state to do the exams and she should perhaps go home!

We have spoken to the school who are naturally upset at what has happened - it was a mistake - but why oh why do these things happen? DD had picked herself up and wanted to have a go, but is now in bed.

No one at LP just an answer phone and I didn't leave a message, will ring them again later.

Never mind, we have had much worse to contend with, but it is so frustrating when things like this happen and it could have been avoided. DD will see her therapist tonight, hopefully he will make her feel better about things.

Hope everyone's DCs are OK, look forward to hearing from you all.

21 again - oh dear! These things do happen but why not to someone who has nothing else to contend with!!!?
She probably is feeling stressed about end-of-years as she has missed so much and knows it! Very frustrating for her.
Tell her to try again tomorrow!
Glad older DD is doing well. My DS is like a bear with a sore head!I can't wait for the end of next week when it will all be over!At least I've only got him this week. Last week it was all three!!!
I would recommend you do LP before September if you can even if she feels better. She has so nearly cracked it herself that I think that would give your DD so much confidence to go into Y10 and she would have all summer to challenge herself etc before she started school again.
Keep smiling - you're nearly there!!

Optimistic - I have thought long and hard about this and your idea of doing LP before September seems a really good one. Maybe if it can be arranged fairly close to starting school, her confidence should then be much better.

DD is so much better today but we didn't wake her up this morning - thought it better to leave her to rest up. Her sister is home this afternoon (study leave) and I can hear them laughing together, it sounds so good.

She has now got several sessions of CBT booked and went last night for the first. She certainly did seem much more positive after that so I do think we should let it continue.

Best of luck to your DS for GCSEs. DD finishes on Thursday afternoon and then she and her friends are off to celebrate. They have all worked hard and I am very proud of her

Dear 21again - prob no consolation but my dd is much worse this week too. I feel so sorry for her - she has exams coming up which are modules of her gcses and has been trying to revise. Like you, i am much more serious about LP but I am really not sure how to choose a practitioner.The nearest ones are at least 30 miles away. Also, I had a read of an application form last night and I am still worried that she is ready. Also, there was a question on the 'supporter' questionnaire asking if I tend to believe what I am told! I am not cynical but I certainly question things - is ingrained in me.
Any ideas anyone?
How are your dds this week, pos attitude and choc?

Dwardle - so sorry to hear your DD is worse, it does seem to be the stress that kicks it all off again. DD has now started CBT in earnest and I am wondering if your DD has had any kind of therapy. We did this DD's way for a long time and she has made huge progress but she does need help with these last few hurdles. She herself realises this now and is much more receptive to theraapy and indeed to lightning. DH also went with her on Monday night and sat in for 20 minutes of the hour long session,he actually came back full of renewed enthusiasm not just for CBT but also for lightning. I think he has never totally embraced the idea as he doesn't like what he doesn't understand.

I think wrt the practitioners it is a good idea to speak to deifferent ones, some definitely empathize more than others. We have been fortunate to have one recommended and he certainly does seem great. He spends quite a bit of time with Phil Parker and although he is further away than the others, he would certainly be my choice.

I would say also that we all question things but re lightning, it is important to have an open mind. Obviously until the your DD feels ready, you really cannot do anything other than try to get her to read a bit about it and perhaps look at the videos. There are quite a few on youtube. It has taken another relapse for our DD to feel happier about considering LP or indeed the CBT so we will see how it goes.

DD has gone into school today for one exam only but that will be a big challenge for her. All of her teachers are really being supportive and if she can cope with this, then hopefully she can try some more tomorrow.

Hope everyone is OK and that you all keep posting.

Dwardle - I know what you mean about the LP form! I would hate to think of myself as someone who doesn't question anything but from memory it's an 8 out of 10 type thing. What they are trying to get away from, and as a teacher I know it so well, is someone at the back going ' Yeah, right!' and looking liked they sucked a lemon all day!! If you had a bunch of cynics ( coming from someone who struggles to be less so) it would be impossible to run the course as there is so much to cover.I think they just want to be as sure as possible that people are attending in an open minded a way as possible. They're not expecting a load of nodding donkeys!!!
Did you consider staying over for LP, Dwardle? Lots of courses are residential and if you do it with Phil Parker I guess you could stay overnight and have some fun in London!!
21again - I'm wondering if it might be better for your DD to do LP at beginning of hol as then she would really have techniques under her belt. Tell me to mind my own business if you want!

Hope all is well for you Positive and Choc.
Hope you're OK too Nickschick.

Dwardle - me again. We used Helen Jackson. She is an ex deputy head of a primary school, who worked all through Glandular Fever and then developed ME. She retrained as an LP practitioner and was very good. She covers Kent, Sussex, Surrey and Liverpool!?! I think all the practitioners are trained by Phil Parker and then vetted etc etc. I agree with 21again though, you need to feel a bit of a rapport on the phone. It was a big worry of mine that as a teacher I would fine the trainer completely painful!!

Hope DD does OK in modules. Presumably as they are modules she can resit them if necessary? It's so difficult for them because our DC want to achieve what they know thet can given good health.....

Keep posting...

Hi All - my DD sat her first chemistry paper last Thursday, Friday she was tired but Ok, then Saturday she was worse than she's been for months. The only thing that would relieve her head pain was paracetomol and codeine which leaves her dopey, plus her legs were hurting and she was far more unsteady on her feet. I felt really scared as it showed me how far she has come and was so worried that she wasnt going to bounce back. She finally started improving again yesterday, although she isnt back to where she was by any means. My worry is she has her second exam next Wednesday and I dont know if we're in for a second relapse or whether it was connected to her period starting and/or some paint fumes around as I had been doing some painting Friday. So we are taking things very gently at the moment. All this has shown me how vulnerable she is to getting worse. Have the first session with the Perrin Technique lady booked for 26th which I'm also very scared about.

Hi All,

I have been reading the posts ? so sorry to hear that things haven?t been going too well for you.
I had not wanted to post, cos I felt I had taken over a bit last week, so trying to take a back seat. We are also going through the GCSE trauma with DD2. Roll on the 19th ? last one!
Massive steps forward here this week. DD has started walking around the house for the first time in months, which is fantastic. The first time I saw her stood up I am not ashamed to say I shed a tear or two. She says she feels really tall when she is upright now! It is going to take a bit of getting used to. I feel our problem could now be stopping DD thinking she is now cured and can do everything and I am sort of watching life while holding my breath at the moment, especially after reading all your posts this week!
DD has been referred to a second CBT therapist. We had one lady, who DD really did not get on with. Our consultant says it was the lady, not DD being negative, so we will give another one a go. I have also been looking on youtube at the lightning things. Interesting!
Hope you all have a good weekend and that the sun shines.

Positive - post as much as you want, it's always lovely to hear from you especially when you can tell us something as good as your last post. I know exactly what you mean about holding your breath, I was like that for a long time. It is sometimes hard to find the right therapist, and obviously quite a lot of time can be wasted with someone who is not quite right.

DD managed her exam yesterday, in fact she was really positive when she came home. She has gone in again today for some more, and will hopefully finish off tomorrow. She phoned me a earlier and sounded good. I am so pleased for her as she has been so determined to get through these exams and I just hope she doesn't collapse afterwards. (I really mustn't think like that must I).

Choc - so sorry to hear your DD suffered after that exam, but it is obviously a very stressful time and can affect even the healthiest person. Lots of rest and encouragement and we will be hoping for some good news next week. I hope you don't feel too down about it, it is hard to see them going back downhill especially when they have made such a lot of progress, so I can understand how you may be feeling.

Keep posting everyone...

Thanks for the encouragement. Hope all the DCs are coping ok, and can relax and enjoy the weekend. Exams nearly over!

Am I being really negative, or is it normal for someone to have a huge step in the right direction when they begin to recover? Just over a week ago DD was sofa bound and in a desperate way as she had been for months. This weekend she is able to walk, she has been out with friends for a couple of hours - walking, not just sitting! I should be jumping for joy, but I can't get my head around it. I know she is pushing herself probably way too fast, but she has not experienced any "pay back", so should I still keep containing her enthusiasm? I don't feel I can really trust her to stop as soon as she should, but if she is coping without any problems should I stop her doing things that she has missed doing for nearly a year? It looks like a miracle has happened here at the moment, but I just can't quite believe it all.
Have any of you had anything like this happen? I don't want to be negative about it all. I want to encourage her to enjoy life again. It is not that I doubt how bad she was a week ago. I saw her trying to stand and getting frustrated at not being able to do the simplest of things, but it all seems so weird.

Positive - We have been through this, and it has happened on several occasions. Everyone is different so it is diffficult to advise you but what we have learned is to try to avoid the boom and bust scenario. We continued to try to pace DD but increased by more than 10%, suddenly that increase is a little bit too small. DD started school but on a very reduced timetable, and if school will allow your DD to perhaps just go in for a short while that may be the best place to start.

Has anyone made any recommendations to you about where to start? Maybe your DD can just go in to school when she is ready and stay for a short while, I know of someone in RL with a DS who now just goes in at lunch times to keep up with friends etc.

It is very difficult to hold them back when they are feeling well, and you are fortunate to have a long Summer ahead so that your DD can rest.

One thing we did notice was that DD was never ill during school holidays, and this led us to the belief that, in her case, the illness was not just about doing physical things but also about the mental stress she was under. We have had to build on the stress side very slowly and have been lucky to have had a lot of support from school. CBT is helping a lot now and DD has completed her exams this week despite a minor setback.

Let us know how your DD is doing and most of all enjoy the fact that she is feeling well. There is a light at the end of the tunnel and you have just seen it.

Don't let school push you into sending DD in too soon, and as the consultant is so good it may be an idea to contact her to get some guidelines.

Looking forward to hearing some more good news from you.

Thanks for that. Bit of a slump this afternoon, but so far not too bad.
I think we may look into starting a bit of school in September. One problem is that we think we will change schools as we have no confidence after the way we have been treated. They made life so difficult for her when she was first ill and I have no confidence that it will not be repeated. We do have an option of a very small tutor centre which specialises in young people who have had CFS and other illnesses. Meeting in a few weeks to see if this is possible.
Have a good weekend. Big festival here this weekend - bit of a clue as to where I live there!(ITV2) So having fun with that, although dd desperately wanted to be well enough to go and is using energy sulking!! Fingers crossed that the light at the end of the tunnel gets stronger and bigger by the day!

Hope DD is still feeling good Positive. The tutor centre sounds good and much less stressful, you are lucky to have this facility close by.

One thing I forgot to post earlier is that a friend took her DS to see Prof Findley in Essex. He specializes in CFS and is a neurologist. His recommendatiions were melatonin for sleeping and also a substance called NADH. This is a natural substance that replenishes the body's depleted store of ATP - the storehouse of energy - and you may like to google it to find out more. I also spoke to another friend who is a neurologist and she agreed that NADH makes sense. Prof Findley is also NOT against Lightning.

Hope everyone is OK and enjoying some sunshine, my eldest DD has finished exams and has been spending the weekend at a music festival - not the one near you Positive.

Keep posting everybody.

Hi all. Interesting posts....Not only is Prof Findley NOT against lightning process , he is running a research project on it at the moment . I assume this is to get it 'scientifically recognised'. Anyway thought that may interest you all.
My gut feeling is that you have to let the DC decide for themselves what they can do in a way. We cannot get inside them to see how they feel and it's that, that is most frustrating. I'm so glad your DD has taken such a big leap, Positive. It's important to remember that you can just get better on your own from ME, especially if the trigger was a virus. With our DD we could almost sense the virus leaving her body as she had fewer and fewer of the temperature/headache/nausea symptoms.
If I'd been treated in the way you have Positive, I'd also think about moving schools. What happens with the tutor group if she gets completely better? Do you still have to be on a school roll? My DD was so determined to keep everything normal that I wonder whether she would have wanted that. Just playing devil's advocate here!!

Glad you are all sounding so upbeat! Sunny and lovely here, just going to check up on where the music festivals are!!