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!

Me again - was just rereading posts and just wondered, nickschick, if your ds2 is up to full days at school - is that causing the boom bust thing? - says she when my dd is not even there most days!! Good news frrom GP tho.
Also, what is aiding and abetting the illness? Would be very interested to hear more as I do worry about that, esp as we have had to change our 'take a para and get on with it' attitude That did not work!

By dwardle on Tue 10-Mar-09 21:57:48
Me again - was just rereading posts and just wondered, nickschick, if your ds2 is up to full days at school - is that causing the boom bust thing? - says she when my dd is not even there most days!! Good news frrom GP tho.
Also, what is aiding and abetting the illness? Would be very interested to hear more as I do worry about that, esp as we have had to change our 'take a para and get on with it' attitude That did not work

Hi everyone ds2 is shattered but insisted on school.

Dwardle full days are definitely too much for him but he will not bend with any changes as yet -im hoping when we see the specialist she will suggest something - the 'take a para' thing made me laugh - i actually put tic tacs in a tablet bottle and told him they were prescription pills that would combat his tiredness - it didnt work.

Aiding nd abetting for us is a big thing we try not to influence his life with regards tohis health but it is very difficult not to say 'dont walk to the shops ill drive you -you look tired etc'-dont stay up late you need to sleep- im not quite sure how to break that as I know ds2 would push himself into collapse.

Yes I was very pleased the Dr will support us as sams attendance is under 60%

Hi all - 60 per cent nickschick? This will make you feel better, my DD was down to 20 per cent!!I got GP to fill out certs that he would give an adult and that seemed to do the trick!
When I was talking about 'aiding and abetting' it was in relation to doing the LP. It's not something that is easy to break if your DCs do not feel confident in being better. That's what LP does;it gives you a method to use for when you feel ill etc and gives you confidence in dealing with it and so therefore the parents can stop being carers...Does that make any sense?
Dwardle - I think your plan sounds good. Can your DD set her alarm and commit to getting up? Then you won't have to get involved in her routine until she comes downstairs.
It is so difficult to stop being anxious when our children are ill and not able to be well. I've got another idea Dwardle. How about you get DD to run over her day at the end and say what was good about it (and no negatives allowed!). Then the next day set herself an extra small challenge. That way she can see she is moving forwards. The 'not asking how she is' idea is that if you ask a person with ME how they are they immediately 'bodycheck' and that takes them into a negative spiral:'oh God I've got a headache/ muscle pain/nausea etc etc'.So a 'great, you're up! What have you got planned' approach is more positive.
The 'take a para and get on with it' made me lol! Would it were that simple! There are still some people who have said to me after Lp 'so it was all in the head then?'. I want to string them up from the nearest lampost! This IS a physical illness!!!!!!!
Hope some of this helps! Keep posting everyone.
Just for the record DD has done 5 full days now - I am still breath-holding!

String em from a lampost??? i wanna knock their head off lol!!!

20% !!!that has stopped me being so fretful the lea send a letter to the doc to sign to say the time off is justified - is your dd ok at night? is she sleeping better?? how is she when she comes home?

Hi nickschick. Yes she is now sleeping properly at night because the techniques she has learned have explained how her adrenaline was running high so making her an insomniac. When she comes home she is as she says 'normal tired' but I make sure it doesn't descend into ME stuff by making sure she 'gets on' using the process if necessary.
Have you looked into LP? I know it's expensive but if you consider how much we have all shelled out on other therapy and say, how much we would spend on Christmas/holiday etc I think it is worth it. Hope Sam is still managing this week. It sounds positive.

Hi there
I had ME when i was 13/14 thats was a few years back now!!!!!

There are lots of different things that affect you i know I slept a lot of the time but when i felt up to it I went into school, also had work to do at home when I was able.My parents took me to see a private doctor and there were other things that went along with it as well . I have a couple of food intolarences which dont really affect me now to much just have to watch it some times I also had really good friends that use to come round when I was awake also my family were very positive so it was never a big issuse I was never ill just a bit tired or asleep... I think now there is lots more info on the subject I know when i had it the school came to my mum for answers because there were a few children with it or simlar and they didnt understand. One thing is it went as quick as it came with me and by the time I was 16/17 I was back to my normal self...
Hope this helps and please excuse my spelling...

Thanks for your post, groovemachine. It's always nice for us to hear from people who have recovered! Do you have any remnants of the M.E. now?

21again, nickschick, dwardle are you posting today??

Hi everyone,
Good day - had meeting with LOVELY staff at dd's school - they tell her just to pop in when she's up to it - so supportive. Also had week working from home and seen that dd is not much diff to when I am at work - BUT going to school and reviewing my steps programme has made us see that there are improvements So I feel less guilty about going to work and also think that dd is much more positive.We have sorted out work for her to do. School really accept that this is affecting all aspects of dd's life, not just her schooling. She is now down to 8 gcses (is y10) but that will still get her into 6th form. I am hoping that this will help dd not to have to redo Y10 - that is the plan anyway.
Have not looked at dd's attendance as cannot face it - am sure it is so low! 60% is really good!
OM - I did smile re lampost - even one of my best mates thinks it's in her head or - there must be more to it. Arghhh!
Am v interested about your posts re LP - have looked at website. DD has such probs with sleep - the idea that she could learn a technique to help her does appeal. Loved the suggestion about reviewing the day and the alarm clock one - that will be a target, but I do see what you mean about handing control over to her and making her responsible. Now she is not in a state of panic about everything, that seems eminently achievable.
Great to hear from you groove machine.So pleased you recovered. Nickschick - are you and ds2 having a better week? Do you find that tiring - the emotional rollercoaster of good days and bad days? I see what you mean about your ds2 driving himself. I think that might be good in a way - i was beginning to worry that my dd had lost her drive and i think you need that to cope with this horrible illness.However, then you need to learn to pace yourself. I have found with my dd that if the drs say it, it is so much more likely to be listened to by dd than if I say it! So good luck with your specialist.
I have never done this conversing in cyberspace thing before and I must just say that I have found it so helpful - thank you all for caring and talking. Keep posting

Hi to all, couldn't get to computer yesterday and I do miss chatting to you all when that happens.

Dwardle - really pleased you sound so much more positive and remember, that will transfer to DD. It really does help if school are supportive, we found the same. Hope things continue to improve. Interesting what you said about Nickschick's DS pushing himself, do you think that your DD is more determined now? I have noticed a strength in DD that I didn't know existed. She seems to be a different person now and much more independant. Hope it continues.

Optimistic - sleeping seems to have been one of the keys with DD. She wasn't sleeping well for some time before CFS and yet now - apart from a couple of odd nights - she has slept deeply. She regularly complained she was having nightmares and woke up many times in the night, obviously her sleep wasn't restful. Not sure what has helped her to sleep better i.e homeopath remedies or the CBT, but something certainly has made a difference.

Hi to Nickschick and Lois, hope all is ok, and Groovemachine good to hear from you.

Oh Optimistic - nearly forgot to mention - I was chatting to someone yesterday whose grandson has been suffering from terrible panic attacks, anxiety and has been diagnosed suffering with OCD. Poor boy has not been to school since September and is only 11. I suggested she look at LP website as I thought they may be able to help. Told her that she could phone the local practitioners and they could at least say whether or not they would be able to help. I also mentioned that we were considering it if DD has another setback. Do you think LP would be appropriate?

Thanks to everyone here for posting, it is a huge help to chat to other people who are in a similar situation and helps me to get things into perspective.

Hi there .

Everyone seems to having a 'good' week- Sam has almost done his first full week at school in a long time ,although as we all know he may well pay for that at the weekend ....we will just have to wait and see,my worry that obviously i havent shared with him is that so far our family gp has been of the 'non- believer' side now that he freely admits hes more 'open' since Sam its almost as if Sam is hiding it...iyswim- a full week at schooland P.E is way to much for him but he insisted and to an extent he has to see what his limitations are for himself -I dont want him to see me as the decider of his illness.

Dwardle the rollercoaster is almost the decider in our family life - it depends on whether we go out as a family - whether we can have friends in its awful for us so it must be for Sam never quite knowing where we are 'at',I dont know what im hoping the specialist can do but its a step in the right direction (hopefully()

Im very interested in the LP but I have been reading some controversial literatue about this even so I dont think Sam is at a stage where he would be able to 'use' this yet.

groovemachine I love to read stuff about people who 'got over' it especially way back when it really was a rarity.

dwardle that was a great meeting you had I dont ever see our school as being so 'supportive' .

Just as an afterthought after wed spoke to the doc he stopped me on my way out and asked me what my thoughts were as to why these kids seem to be getting a lot more cfs and m.e symptoms these days - of course i replied i didnt know - i dont but im quite interested to relate the stress factors in modern society to it and childrens inability to 'switch' off stress and digest it in chunks - so in short i call it the 'sandpit theory' in that if children had less stress and structure in early education and life and just more time to 'grow' into themselves children like ours might be able to understand their bodies a little better and they may well enjoy better health.

Thats not to say M.E is psychological indeed anyone that believes that only need spend a day in any of our homes to witness the very real illness it is.

It is lovely to have this cybersupport and I definitely appreciate it.

most meaningless advice ive had lately- 'you need a strict routine 9pm bed 7am awake every day regardless- 3 meals a day lots of fresh air and bie rides dont let him stop that will sort him out' of course it will .

Nickschick - Sam is doing so well, he sounds so determined and strong, he really has the character to beat this. I know what you mean by rollercoaster, I feel that our lives as a family have been on hold for the past year. It affects all of us and I feel that we are not "out of the woods" yet. I think there's a lot of truth in what you say above about the "sandpit theory". One other thing I have wondered about - and it may seem really nutty - but are the number of vaccinations that children have nowadays anything to do with all this. It seems to me that their immune systems are put under such stress from a very early age and by so many jabs that there comes a time when they just can't cope any more. Although sitting here thinking about it, I suppose the length of time following jabs to developing CFS is probably too long. Just a thought

It's so lovely to hear that everyone is doing so well.
My DD has just completed her first full week since November. Hurraaaaaaay!. She has done tap and riding and came home today on the train ( only 12 mins plus a short downhill walk). She has no payback at all and doesn't think she has ME anymore. A miracle! This is why some people think LP is controversial, nickschick, but take it from one who has done the course, there is nothing, I mean nothing controversial about it! It 's a well thought out, common sense approach BUT you have to want to do it and you have to do it a bit like a diet. We've all (probably) dieted in the past and have sworn we've done it without cheating but have , well LP is like that. If you don't do it properly it won't work but it's your responsibility which is why you have to be ready to do it.
I too have never done 'mummmy's msn' as my kids call it rather disparagingly imo, but it is absolutely wonderful to talk to you all and I truly think of you all as friends!

Dwardle - I'm so pleased that you sound much more positive. Have you taken some time off work then? I'm sure your DD won't have to do Y10 again. What will you do about her coursework and will the school get some home tuition for you? LP is used according to the website for anxiety and panic and having done it with DD I can see how it works. It's a bit like being given a key to unlock your illness and what it has given my DD is confidence again in her own physical ability.
21again - am so glad DD is sleeping. That makes such a difference doesn't it? Are you still going to Bath?
nickschick - wow to Sam doing a whole week. Maybe it's a good idea not to assume he will crash. You sound like a very sensible person. I loved your post on the education site where that Y1 mum was getting her knickers in a twist. As a primary teacher I appreciated your comments as everyone else seemed to be inflaming situation and lo and behold as soon as said mum spoke to poor teacher it was all sorted out!!! I digress. Do you like the red nose themed smiley??

Post soon all....

Optimistic - No we have cancelled Bath. We felt DD had seen so many different people all in a short space of time, and she was doing so well that it is on hold unless or until we need it. Dr Crawley's secretary was very helpful and said we could still go at a later date.

Your DD must be feeling very pleased with herself, she deserves lots of praise for doing so well. I just wish DH would agree to our DD doing LP now, I would like her to acquire the skills for dealing with this as your DD has done. Still, everything is much better than it has been for a very long time, and a few short weeks ago I would have settled for this happily!

I'm relieved 21again, only because you have been so interested in LP that to go to Dr Crawley would have sent you in the opposite direction . That's not to say that I don't think her methods work, they do, it's just that they don't fit at all with the ideas behind LP and you seem very up for that!
Can I ask you why DH is being reluctant? I know we have 'changed horses' rapidly over the last 2 months. I only have to read my posts to confirm this and I know my DH was a bit bewildered by it all but he was happy to
be bludgeoned agree to things because he understood that I knew more about DD in a way (being at home with her - him being at work 18 hours a day). I think once I had spoken to someone who had, had a daughter in the same position and I had literally had all my worries over it alleviated I just had to do it.
I am pleased your DD is so much better and I'm sure it will continue. After all, you as a family have come a long way in your thinking since November judging by your posts, so you have more tools available. If ever you or DH want to talk to me privately I think there is a way of doing it on mumsnet (but I would have to ask the techie people)then feel free. I feel like we know each other anyway!
Have a lovely weekend

Optimistic - thankyou for that post, it has helped me a lot to talk to you and I feel like I have found a friend.

DH works from home now and so he sees as much of the DCs as I do. We therefore get plenty of opportunities to discuss problems and hopefully usually come to reasonable balanced decisions. A few years ago when DH was away for a great deal of time, I would certainly have had more influence because I would have known the DCs better.

DH feels that DD has been against having CBT, and as far as she is concerned she is well now and doesn't need more therapy. She is due for a review with the therapist in April but she laughingly insists that it is a waste of time. DH's view is therefore that DD will not feel she needs to do LP at the moment and, I must say, he is probably right. You do have to want to do this. However, she is still not full time at school and LP is a training course not a therapy and therefore DD could acquire the tools needed to help keep her well and get back to full time school. I do think that if I were to explain to DD that this course would enable her to get back to normal quickly, then she would want to do it.

I am fine with this while DD stays well, and I know that I shouldn't even be thinking that she is going to relapse. I do know however, that last year we thought she was better after the Summer, but when she caught another virus she rapidly went downhill again and became worse than ever.

What do you think? I do value your opinions

I think you are right in all you say. If she thinks she is well then she probably is. If she were to have a relapse in the Autumn then you have LP to fall back on and she would then, I expect, see the value in it. I have to say that my DD has been resistant to a lot but has been easy to 'turn around' when we felt it necessary and I'm sure your DD is the same! I didn't mean to be intrusive and knowing your DH works from home obviously puts a totally different spin on things!!!
I'm rooting for your DD and she sounds a strong and independent young lady. I do think all the DC have learned valuable life lessons when dealing with all this.,.

Thanks Optimistic - I didn't consider you in the least bit intrusive.

I am seeing my sister tomorrow and will be interested to hear how her friend is now (the one that did LP last year). I am sure the friend will still be well as she certainly had mastered the techniques - will let you know.

How is everyone else - Dwardle,Nickschick and Lois I hope your DCs are ok.

How is everyone and all the DC?
Post soon

Hi Optimistic - DD is doing well and coping with four days. She feels she can cope with more but we are not increasing until after Easter. DD is very positive and looks fit and healthy, no-one looking at her would say there was anything wrong, and I am much more confident about her. I don't think that I can say that she is "out of the woods" yet, although I believe that I would feel differently if she had done LP. I saw my sister at the weekend and she advised that her friend is still brilliant following LP. The difference in her is apparantly amazing and I quite believe it.

Hope your DD is well - I am sure she is - and please keep us up to date with her progress, it is great to hear about her.

Hi 21again - glad your DD is doing well. I'm sure the lovely weather helps. She sounds like she's on an upward path...
My DD is still going strong. She has been in every day, all day since 5th so I think we are up to 10 days.
She just seems so much brighter in herself, like a great weight has been lifted. I think she still looks pale sometimes but she is confident in dealing with it all now.
It's just so wonderful not having to plan anymore and just go with the flow...
Post soon...
Nickschick, Dwardle where are you? Are you both OK? Post soon...

Hi Optimistic - I am so glad your DD is well, although I must admit I don't expect to hear otherwise. How lovely for you to feel normal again and to see her enjoying life. Has she commented at all on LP or her recovery, and does she think it is easy to stay well?

have just seen this thread and would encourage anyone suffering from unexplained fatigue to first have a blood test to make sure they are not coeliac. Then try either a gluten free diet or the digestive enzymes like peptizyde or Biocare Glutenzyme plus that digest some gluten, ideally the diet.

My coeliac blood test is negative but gluten sends me to sleep. There are quite a few other people who have the same reaction and if your children are amongst them they could get their life back.

Well here we are with a heavy cold and off school. I know in my heart of hearts that DD is fine in terms of CFS but I have to make myself stop thinking 'here we go' and all the worry feelings have obviously resurfaced this morning. Poor thing, she got really cold last night at riding and was streaming this morning. She got up and dressed and ready to go and eventually, after an internal tussle, I said to her that I could see she had a really heavy cold and was she up to school. The relief on her face!!!. I guess this is our first test. Even DH is counselling me from a packed train carriage!!
As far as LP is concerned she was rather tetchy to start with but that is when she was still doing it. Lately she has been more relaxed about talking about it and said it took her 6 days to feel she didn't have CFS anymore. Today she says she just has a cold, there's a lot going round, she's glad she's ill while LP is still fresh in her mind and she knows she will feel better over the weekend and that she may have the remnants on Monday but she'll be able to deal with it.
I don't think she considers herself to be CFS ill anymore so therefore she doesn't think about how easy or hard it is to stay well iyswim.
Post soon. Is your DD still going strong?

She will be fine!! I remember my sister's friend saying that she could phone her LP practitioner afterwards if she had problems, so presumably you can do that if there are any doubts. I do understand exactly how you must feel - I would be nervous also - but I am sure your DD has all the tools in place to deal with this, and as she said it is better to get it now while LP is still fresh.

DD is great and texted me to say she would be late this afternoon because of a singing lesson.

Keep in touch and let me know how DD is.