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!

Lois im sorry for your dd - its bloody awful for them nd us too isnt it.

Lois so sorry your DD is going through this we all know how you are feeling so keep posting and we will be here for you.

If your GP won't diagnose CFS or depression then what does he think is wrong with her and will he refer her to a specialist? If you think it is CFS then maybe GP will refer her to Dr Esther Crawley in Bath. She is the only paediatrician specializing in CFS and will see patients from outside her area. Phone and talk to her secretary - sorry can't find the number atm, or google her and send email for more information. Look back on this thread for more details on her also, there is a lot of info here already.

I understand your DDs frustration at CBT but many people do find it helps. Can you persuade her to try to see another therapist. Seeing a trainee is not much help to your DD and I'm sure it is important to see the same therapist throughout.

Nickschick tonsillitis is a nasty illness and so sorry Sam is ill with this. At least you know what has laid him low this time and I do hope he gets better soon. I know I was prescribed antibiotics for it some time ago and they did seem to work pretty quickly, but I suppose they are not always appropriate. How is he today?

Dwardle and OM how are you both and how are DDs? Post soon...

Thanks twentyone.
Have lost all patience with GP. Last visit GP sat there saying 'What would you like me to do?'.
She has agreed to refer her elsewhere (a psychiatrist) but DD knows it can take weeks so isn't too hopeful.
Also all her blood tests have come back clear so I guess from their point of view there's not anything to work with except how she is feeling.

My worry is they get so used to feeling ill that they can't remember what it's like to feel well and almost (well I'm practically certain of this in DD's case) fear it - if anyone recognises that?

Nickschick tonsillitis is a nasty illness and so sorry Sam is ill with this. At least you know what has laid him low this time and I do hope he gets better soon. I know I was prescribed antibiotics for it some time ago and they did seem to work pretty quickly, but I suppose they are not always appropriate. How is he today?

Hi 21 again and everyone - Sam is still asleep he was v achey and moody last night (joy)-just been to the meeting at school nd it appears that nobody really cares much so long s the Dr will write and say Sams illness will cause frequent absenteeism.....- very supportive of them isnt it.....none of them knew anything about M.E although there is another child with a c.f something or other illness that is often off too( i think it must be cfs - wouldnt you think theyd tae just few mins to read a bit about it ??)

Lois - the thing is that M.E/CFS - doesnt leave any distinguishing mars etc its not like a rsh tht proves it and a lot of the old school type doctors seem to think its like a golf club disease - i cant be bothered to work today ill play golf instead and so find it hard without any evidence to believe in.

Our dr is pretty much like this hes a fab doctor but is only now coming round to the idea that sam may well have M.E and he has actually said he doesnt 'subscribe' to that illness but having seen sam all thses years is convincing him that it could well be.

It is surtpising how many doctors still seem to know next to nothing about CFS. We were lucky in that although our GP had had no experience of this, he still took it very seriously and did everything he could to help. I think the fact that our DD was a bright, active and very sporty girl before all of this, made him realise that with the absence of any obvious explanations (bullying,abuse etc) there were no reasons why she would want to be away from school. No one wants to feel like this, and although perhaps many will skive odd days, huge chunks of missing school shows something is very wrong. Needless to say GP now has three patients on his books!

Nickschick - at least school are not putting pressure on Sam to get back. I do know of someone whose DD was in that position and it did not help at all. Will school send work home for him? We have some sent home for DD and she does it when she feels up to it and it does help her to not fall too far behind.
We can also make sure she only does so much and doesn't put herself under too much pressure.

Optimistic where are you? Hope everything is ok.

I'm here 21again . You didn't think I'd forget you did you?? Hi all and especially to Lois. Haven't read all the threads since Monday but I just wanted to post and this is the first time I've been able to since Monday.
Well, what can I say?? Just I feel like I've done a degree in three days!!! It was fantastic and I am exhausted!!
It's very hard to describe LP as it is very complex and to try to put it even into 3 sentences would be very hard. All I can say , and I will tell you what I can - you are not sworn to secrecy at the end! - is that my very very DD did amazingly. She got up for 3 days in a row at 7.30am, we drove in rush hour traffic for 1 hour , she attended 4 hours a day of intensive training and then did various things in the afternoons such as shopping, horserididng etc etc. Today she went to school ALL DAY which she hasn't done since november!
It is a training programme NOT a treatment and she is 'in training' to reprogramme hersaelf both physically and neurologically. I am sure after the initial excitement she will have days when she doesn't do LP and she will wonder why she has symptoms but if she apllies LP correctly every time she needs to without exception it will work!! How about that for a statement????
I will read all the other posts now but I just wanted to let 21again know particularly that I have not abandoned this thread

My worry is they get so used to feeling ill that they can't remember what it's like to feel well and almost (well I'm practically certain of this in DD's case) fear it - if anyone recognises that?
Lois- this is precisely what th Lightning Process addresses...As your DD is 17 I would look on the website, talk to the trainer and get your DD on to it PDQ! Why? She is much older tha my DD (13), it is intensive and it will give her quick results. They won't take her on if they don't think she's ready - ie willing to address her illness, beliefs etc etc. The premise behind it is that in CFS/ME the sympathetic nervous system is in a permanent state of enhanced activity. There are disturbances in the immune, endocrine and neurological systems. The process teaches you to powerfully influence all this so that the parasympathetic nervous system can stop being suppressed (ie healing, sleeping, clever thinking, digestion). You have to apply it properly BUT I think secondary aged Dcs are in a great place. They don't have baggage, they are used to a learning environment and they want to be well so much they will do as they are told!!
It's very, very early days for our DD But I truly think she now has the tools she needs.#
To everyone on here tho, It is THE OPPOSITE of conventional wisdom ie pacing etc. I still think Dr Crawley is great and I don't regret not doing LP before because my DD just wouldn't have accessed it last year.
HTH
Love you allBig hugs all round

op mumma thats sounding fab !!!!

Huraaaaaaayyyyyy!!!!! I can't tell you how relieved and pleased I am. I was soooo nervous but also excited for you, and I can tell from your post just how positive and happy you are feeling.

How was your DD before she started on Monday and also how were others on the course. Did you see improvement all round?

I will have to check in tomorrow with lots of questions. Take care and tell DD we are so proud of her

That sounds like an amazing result
Well done to you both.
I really hope it makes the difference and I shall certainly look into it.

Thanks all . I'll try to continue to help in any way I can and let you know how we get on.

Too tired to post properly but wow - am so interested in what you are writing about LP.
Hang on in there Lois - my dd had real panic issues but they are decreasing. Will post again to morrow. Big Hugs to everyone

Morning all Hope all DC are feeling a bit better this morning.
21again - did DD get into school for her extra bit this week? Hope so....
To answer your question. DD was very excited on Monday but tired and pale, quiet and a bit nervous. There were 4 others and she was the only teenager but everyone was lovely to her as you would expect. The others were able to walk but had to get a lift to first floor. All looked awful! I felt really quite guilty for being well! How mad does that sound. I had to make a big effort not to participate until asked to - difficult for me being a bossy teacher type but the trainer sat me immediately behind my DD which waS perfect.
I would say three including my DD had amazing results mainly because they were really open to change and willing to take instruction. The other two made huge change but they have still got a way to go. I think you expect LP to work completely after 3 days but it is a 'work in progress.' I think it would be wrong of me to say too much about the content of the 3 days as everyone on the thread would start to have beliefs about LP and that would jeopodise(! can't spell) the success of their own DC.I would HATE to do that!! I can tell you how we get on though.
I would recommend that anyone interested goes onto www.lightningprocess.com and looks at Phil's site . There are videos of people who have done the course on there. You have to be utterly open-minded which I think everyone on here is. Have an initial chat to the local trainer and take it from there.
Well - DD had a great day at school, took in her cake and managed all lessons. She chose not to do PE. (We haven't changed her reduced timetable yet). She, again, woke herself up, got up and has gone into school for a full day. For those who don't know, she hasn't managed fulltime school since October.She has set herself the challenge of going back to her tap class tomorrow and is organising to meet up with friends later on...
Interestingly you don't have to have ME to do LP you could suffer from anxiety, panic attacks and it will work equally well. The benefits of the training have been enormous for me too because of my starting-to-become-excessive worrying! I used LP techniques more than DD yesterday so I could have a nice day too! The knock-on effects will be huge for my DH and my boys who have had such a negative house to be in for a lot of the last 2 years. My boys and I had real out loud laughing last night for the first time in a very long time, so for that, alone , it was worth every penny....

How fantastic!!! You must feel as if the weight of the world has been lifted from your shoulders and that you can breathe freely again. I suspect you will not feel that you are completely free of this illness for a while, but I am sure your DD will just keep going from strength to strength. How lovely to hear of you all laughing together last night.

I showed DH your posts and we had a chat about LP last night. We are going to hold off for the moment as DD is doing so well. She is determined not to be ill again and does not want to keep going to CBT. Her therapist thinks that we have upped the stakes now and she has seen several different doctors and therapists, giving her a bit of a kick up the proverbial backside, and it has shocked her into changing her outlook on things. Does this make sense?

I can almost feel that she is pushing me away and is becoming more independant. She wants to be back in school full time and is doing a bit of P.E one afternoon per week which seems to have done her no harm at all. DD's therapist doesn't want to see her for six weeks unless she relapses, in which case he will see her straight away. He hasn't heard of lightning but recognised the techniques and agreed that they will work.

Please keep in touch Optimistic as I value your opinions hugely and I know that the others on this thread will benefit from your wise words. .

21again. I think you are doing all the right things...Don't talk of relapses and don't think they will happen. Just go with what she wants it sounds like she is kicking it herself which of course can happen. Does it make sense if I say that having been thinking about this today I think all these alternative treatments are all steps in the right direction and that LP is the concentrated form for if and when one needs it?? I have learned that I have been aiding and abetting her illness in a way by becoming a bit of a carer and not being 'just a mum'. I think you should allow her to tell you what she wants and DON'T refer to her symptoms or ask her how she is unless she wants you to. Sorry if I sound really 'bossy' - don't mean to but I'm so cheering for you and everyone else on the thread . I know all the DC here WILL get better!. It's such a lovely sunny day what else could we think?!

Optimistic those are good points and they make sense. I walked in to DD this morning and asked how she was feeling (had a pretty busy day yesterday), and then I remembered your words and told her that I didn't need to ask how she was and she totally agreed. I will make sure I don't do it again!!

As a mum - how do I stop myself being a "carer" especially when she has been so ill? Not too sure about this one - any ideas? What will I probably be doing wrong?

I don't know really, but it's just a shift in the relationship isn't it? I suppose I mean just being 'normal' yourself in terms of not excessive worrying and not dropping your own activities. Also allowing DD to take responsibility for her medication and rest, rather than reminding her ...maybe...I am trying to treat DD in the same way as I do the boys.
Today she has done her tap class and went straight out on the train with 2 friends to local large town. I had to stop myself saying 'are you sure you are up to it?' having said that LP has taught her how to coach herself if she does get symptoms so she has the tools. Yesterday she actually said that for the first time she felt she didn't have ME anymore. We cancelled her acupuncture as we realised this would be a prop if she wasn't ill!!. Have a great weekend and keep posting...

Thanks Optimistic, I think there has definitely been a "shift" in our relationship as I mentioned before.

It's really interesting that your DD can now deal with the symptoms if they appear - what an amazing concept. I am sure that lightning is going to be one of the next big things in the health world, it certainly should be!! I almost feel that even if my DD got better on her own, the skills that LP teaches must be invaluable in so many aspects of life. It makes me want to go on the course anyway!

Have a great weekend and let us know how DD gets on next week at school. Dwardle, Nickschick and Lois keep in touch - I hope your DCs are ok.

Hi all.Hope all your DCs are doing OK. Dwardle , Nickschick and Lois is all OK? Post soon.
Nice to hear you so positive 21again. Did DD make school today? Just off to work, but will check the thread later.
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Hi OM, hope your DD had a good day at school. Is she doing full days yet?

DD went in today, and day off tomorrow, but should then be in for the rest of the week. I do feel more and more confident as time goes on, although she hasn't done a full day yet. I think we'll get it up to five shorter days and then build on that next. Easter holidays coming up will give her more rest although I don't think it's a good idea to do nothing and then expect to go back full on again. Maybe we'll have to get some sort of timetable for her during the hols (nothing terrible but just have some sort of structure to some of the days). She will be doing some catch up work and I'm sure some shopping with her friends will be on the agenda!

Hi to everyone else, post soon.

Hi 21again. That's good to hear. My DD has gone straight back in to full days - 3 in a row now and obviously 'success breeds success'!! It's how she wanted it. As far as she is concerned she isn't ill any more but it is difficult for me to adjust as she doesn't want to keep talking about it and I still find myself checking on her. It's going to take a while for our relationship to adjust back and I feel nervous about it all falling apart even though I know it shouldn't. I guess it will take me a while to feel back to normal - maybe well into next term...Anyway for now life's sweet.

OM I just feel so happy and relieved for you. To think that two weeks ago your DD was hardly coping with a couple of hours school per day and is now going in full days, it really is so fantastic. Have you thought of taking her into your GP and showing just what LP can do? Is it your brother or brother in law who is a GP, and what does he make of it all?

I think the only bad thing about LP is that it costs so much and there will be so many people who cannot even consider spending this amount. I do however understand why this is and wish the NHS were not so constrained.

Enjoy this new feeling and before long your DD will not remember what she felt like when she was ill. I think one thing CFS has taught me is not to worry so much about little things that really don't matter. I suspect some of my anxieties transferred to DD and may have contributed to all this to some extent - who knows? The other day DD told me about one of her friends getting a detention and she asked me what I would say if she were to get one. I burst out laughing and said that I really wouldn't care. DD looked very pleased at this so dread to think what she's up to!!

Have a good day and post soon..

Great news O.P momma...... 21 again,lois and dwardle hope things are ok in your homes.

Well we had a bit of good news today our gp has agreed to verify to the lea why ds2 is absent much of the time - so thats a weight off my shoulders.

ds2 has done 2 days at school and so far the week is looking good .

Hi Everyone
Some really optimistic posts - great news everyone. I am working from home this week - have been reflecting on what you have all been saying and decided to have a sort of review with dd. So, this is what we came up with. Step 1 - making her get up each morning - at about 8.30 at the moment.
Step 2. - getting her to do a bit of work at home - she managed a whole page of maths this pm. Step 3 - she is walking outside evryday - not for long but is happening. She is going happily to CAMHS and we have another meeting at school tomorrow,. It seems a good idea to try to get her back into the habit of working before school - have backed off and let her decide how she feels about school. This has really helped with the panics and anxiety but I still find it hard not to try to control - so I was very interested in your comments about control. I was also interested in what you were saying about NOT asking how she is all the time. What's the thinking there? (Not a critical question) I think I do it too much - due to anxiety and mothering, but... When we were trying to get her to school, it did not actually get her there and caused such distress. It's all such hard work! (moan moan) Not sure how I will cope when I need to be in school more - may try to go in mid morning so I can get her up calmly - but then am I being a carer? She is SO bad in the ams and is sleeping badly. My thinking about getting her up early was to try and retune her body clock - my dd has always loved a lie in!
Your thoughts on our plan would be very welcome! She seems to get brighter as the day goes on.