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 everyone, just bumping up the thread. Hope things are going well. Keep in touch.

Hi all,

21 - How is the school going for your DD? Still good I hope.

Choc - How is the online education? Can I ask how much school your DD missed before you went on to this? What "year" would your DD be in now? Hope you are doing fine.

dwardle - How are things with you now? Hope life has settled down a bit. Hope DD is feeling better now.

Katsh - How are things going for you and DD? I hope you are getting the support you need and deserve. Are the school still being OK?

OM - Is your DD managing full time still at school? I hope so, she has come so far and has done so well.

I took DD to a meeting just before she was supposed to go to her tuition unit today. We discussed possibilities for next year, which is very difficult when I can not even get her sorted for now. A little dis-heartening to have people discussing that she will probably not be well enough by then to do what she wants to do, and that is a lot less than she was planning for a year ago!
By half way through the meeting she was looking as white as a sheet and was struggling to sit on her chair. So took her straight home and not on to the unit.

I am going to try and speak to the paed tomorrow and get her view on what is happening with DD as we are not happy with the "pacing" inflexibility.

I am going away next week and leaving DH in charge, then away with DD3 to visit DD1 for a few days the week after. We know this will wear her out, but for her emotional wellbeing we have decided to just do it, regardless of what Mrs CBT may say. - I plan to keep quiet about our plans as I don't want a lecture!

So if all goes quiet from here for a while, that's the only reason, although I will get on before I go and let you all know how CBT went with the McD discussion! Food diary is well under way and I have even got a few yoghurts down her this week!

Off to cook a healthy tea!!!

Positive sorry to hear DD is struggling so much, it will be interesting to hear what the paed has to say. It's probably not a bad thing to take DD away from the stresses she is experiencing right now, and will do her good to see her sister. She will be away from the pattern she has gotten stuck in and it may do her good.

DD has been coping brilliantly up until now but has felt ill all day today. She is not tired but feeling sick and hasn't really eaten all day. I know there are some nasty bugs around at the moment so will have to wait and see what develops - if anything. We have just booked to go away for a few days at haalf term, fingers crossed .

Have a great week next week Pos - totally agree with 21again about getting away. Good luck with both the paed chat and Mrs CBT

Things have improved here - though I hardly dare write that. DD seemed to get the hang of using LP to control stomach pain by the end of last week and has been in school normally this week so far.You were spot on, OM but it took a few days at least to get dd to see that she could use LP for this pain (are teenagers all so stubborn?!)
Even though the path this term has not been smooth, I am SO pleased that dd did LP. I am sure it has helped with lots of things.

She has started keeping a food diary of her own volition shock horror! Of course I am quietly positive and supportive and singing inside as she realises the lack of balance on school days
Hope your dd is feeling better soon, 21again - agree there are some yukky bugs around. Thankyou for bumping, OM. How are you?
Katsh & Choc - do post and let us know how you are.

All fine here....
Back on track after our swine flu week!!DD was in all last week and so far so good this week!! Roll on half-term when we can all have a break from this.....

Hi to everyone on the thread. You are all doing well with your DC. We can only do what we think is best in our situation at the time. But it's always good to have a plan of action as I think it keeps all us mums sane!!

Hello all. Positive - sorry your dd is having a rough ride. Hope you get some helpful thinking from the paed and Mrs CBT. 21again, hope your dd is feeling a bit better today. Dwardle - glad dd is coping better with the stomach pain. Optimistic - glad things are improved for you.

DD1 is off school with sore throat, sore head, fever - so I'm hoping dd2 doesn't catch whatever it is. dd2 had her first attempt at going into to school for consecutive days yesterday. She went in under duress, and had to be peeled off me sobbing . It's a horrible thing to have to do. She is ok once she's in, but cfs has made her very anxious and frightenend, and she's right back experiencing separation anxiety like a pre-schooler. She is having a less good week this week generally, but I have been fortunate in having a few extra offers of help, so I have managed to leave the house a couple of times which makes a huge difference.

We're still waiting for our appointments to come through for play therapy, and my sessions with the psych. - we are feeling slightly desperate for them to start, so I hope they come soon.
Hope everyone has a reasonable day

Dwardle that is such good news about your DD. LP seems to work for a number of problems not just chronic fatigue and your DD is seeing the benefit of this. Well done to her .

Positive good luck with the paed today - I hope you can get through to speak to her. It will be interesting to hear what advice you get there.

Optimistic - hi, so glad you are all feeling better. It's a relief to hear your DD doing so well and dealing with illnes just like any other "normal" person.

Katsh - it is so awful having to leave DD like that even if she is fine when you have gone. Hopefully she will get better and better at dealing with it. I can understand a bit of what you say about the separation anxiety in that we have been comforting them and caring for them while they are ill. It is therefore quite a wrench to have to leave that comfort, especially if still feeling bad, and your DD is very young to be dealing with all of this. If you have the strength and the time it may be a good idea to chase up the other therapists. Some things do not get treated with any urgency unless a bit of pressure is applied!

Choc and Nickschick - hope you are still around. How is everything?

DD is feeling better than yesterday, although she doesn't want to eat. She had some yoghurt at breakfast and some grapes and a biscuit in the car. She says she is still not sleeping very well and I think it's possible to get quite down about things when you are tired. Looking forward to the break, it doesn't seem to be coming very quickly at the moment.

Hi All .. time seems to have flown ..not sure I have managed to catch up on everything ..so hope everything is going well for you all. DD is doing pretty well, we went out for lunch on Monday and to the garden centre on Saturday. After about 10 mins at the garden centre she was "spacing out" (so much to look at, large space etc) but she recovered really quickly. We will go again in a week or so, as this is what happened when we started going out for lunch .it seems to be an acclimatisation thing.
Positive ..pacing is HARD ...no doubt about it ..we are still doing it is not so tough no DD can do more because her levels are higher and she doesn't seem to suffer so much. It is only when you do something beyond their limits that you realise how far they have to go ..no easy answers here. DD would be Year 13 if she was still at school. She stopped going during the last term of Year 10. Year 11 we had ESTMA tutors following which she sat 3 GCSEs. After that there didnt seem to be any official help because she had reached the statutory leaving age (even though she only had 3 GCSEs rather than the 10 she had been predicted!). Last year, we got the NEC Chemistry course and she passed this GCSE in summer just gone. She didnt find that way of working very easy and she had already covered most of the course at school before she was ill, so it was mostly revision. We only heard about this through the AYME forums. Can't remember how old your DD is but it is for 6th form upwards. They do GCSEs as well as AS/A2.. I can give you the contact details if you want. We are very impressed so far and she is in a class "live" with about 5 or 6 others.
I shall try to be back sooner rather than later this time!

sorry ..realised that I should have said that the online education would be open to under 16s, just not the funding. I think this would have to be paid for by the LEA which might be difficult to arrange!

CHOC - Thanks for all the info on the on-line education. I am really interested. DD is year 11, but did no year 10 and will leave compulsary education with nothing. The local college sounds promising for next year, no matter how little she is able to do, they will work around her. I suppose I am just wanting to think ahead and get as much info as possible to cover all bases in case DD cannot do the college next year. I have read bit about the on-line schooling, and it something that we will keep in the back of our mind for if it is ever needed. I do like to look into future options so that I don?t feel so trapped in the situation we are in now, if you understand me.

Katsh - It must be so hard for your DD to not want to leave you. I am pleased that you have got friends around who are giving you a little break. Also, hoping DD does not catch the bug that your other DD has. I assumed that DD3 would catch everything from the others while ?low? with CFS, but it has not worked like that. The others have had illnesses, but DD has remained untouched, so hoping your DD is the same.

Dwardle - Good news about DD. Good on her! You must be so pleased.

DD has just about managed her 1 hour and 10 mins today. Not sure she should have done it really, but she was determined to, so I went along with it. Picked her up looking very pale and now sat lifelessly on sofa, with the ?spaced out? look in her eyes. I am hoping the paed will phone me sometime today.

Beginning to feel as if I want to shut ourselves away from any professional and we will emerge when DD is fully well whenever that will be, without any so-called experts giving us their opinions!
Anyway, I have a good week next week, then a few days away in half term, then the builders are in to start the wetroom, so lots to look forward to over the next few weeks.
I must not allow myself to get down, I must not allow myself to get down, I must not allow myself to get down. Any ideas how many times I have to say this to make it work? I believe in positive thinking! It will work. We will get through this!!

Sorry for my ramblings!

Positive - the website is www.nisai.com. Parts of the website are a bit confusing because I think they sell their product to local authorities etc. - you want the bit labelled NVA. Just had a look and the website has improved since I last looked and there is info on funding (which is dead easy). The lady who's given as a contact (initials VM) is very helpful and will answer any questions you have.

Hi all,

Thanks for the website. It looks really interesting. Will keep a note of all this for a later date if needed.

Mrs CBT has visited this afternoon and I think she was shocked that I stood up to her for once! DD ended up in tears. We discussed the fact that we felt DD was doing too much (1 hour 10 mins) and wanted it reduced. She took some persuading, but agreed in the end. You would all have been proud of my stern "putting food down" voice! At one point she suggested 3/4 hr one day and make it up with 1.5 hrs the next! My immediate thought was of you lot, firstly what you would say to me if I let that one go, then what your responses would be to Mrs CBT if she had suggested it to you. So I strongly objected! Now agreed to 2 sessions of 1 hour a week and 1 hour home tuition. We are happy-ish! Well, as happy as DD could be at the moment.
Mrs CBT very negative about LP. So it has sort of made me think I may try and persuade DD a little to prove her wrong!!
She skirted around the diet issue. I think she realised she had upset me with wild assumptions. She just said that DD needs to avoid sugar rushes!

Yesterday DD was the worst she had been since June, which shocked us a bit. Today she has improved and we now have the weekend, so hopefull she can relax and have enough energy to actually enjoy doing something like watch a dvd with her sister or something. Not up to anything else at the moment!

I hope you all have a good weekend. Away next week with work, so I am not ignoring you all. Will catch up when I return.

Great big well done hugs to you for being so wonderfully assertive in a very positive way!

Positive - good for you but sorry DD ended up in tears . I hope she is feeling better by now.

It is interesting that Mrs CBT is not in favour of LP, our Mr CBT was very interested in it and said it made sense - just goes to show how difficult this whole business is with all the different views around .

Hope things are ok for everyone. DD is back to normal and still coping well. She has a trip to the cinema tomorrow with friends from her old school, and only one more week to half term.

Positive - well done on the assertivness - sorry that you had to be. I hope that the weekend is good and next week goes well. 21 -I'm glad your dd is coping well again.
We've had a less good week - dd1 off with likely swine flu, and dd2 having a much less good week. She looks awful again and was too fatigued to manage her 1 hr of school today. We had an appointment with a dietitian and she lay horizontal across my lap for all of it. I'm not sure why she's not so good - maybe I haven't been able to pace her so well this week with 3 of them at home all the time.
Anyway the play therapist contacted me today and we will start in 2 weeks time, so that is good news.
We were hoping for a 24hr escape to the country this weekend ( the in-laws) but not sure they want to get the flu , so probably home painting the kitchen . Hope everyone has a good weekend with happy children

Positive - well done you! I would like to ask Mrs CBT if she actually knows anything about LP or has she just read about it and made a quick judgement. I would suggest that unless she has actually attended an LP session she is talking out of her *rse . What an opinionated woman she sounds and I should know!!!!!!!

Katsh - great news regarding play therapy. Sorry DD1 is unwell. DD2 has probably got some of the underlying illness as well. I know everyone in our family was hit really hard with 'swine flu'. Hope your weekend is going well

Hi to Dwardle, 21again and everyone else...

Aaaarrrgh just lost my message - where do they go?

I will just have to say hi to everyone, thinking of you all, lunch needs seeing to..

I am just off for a few days with work, so I am not ignoring you all. Will catch up when I get back.

Hope you all have a good week. Half-term is nearly here!

Positive - have a good week, hope DD improves and that DH is cooping ok with things at home.

Katsh - has DD contracted swine flu on top of everything else? I do hope you have managed to stay fit.

Dwardle - how is DD coping now, I hope she has well and truly beaten the stomach pains.

Optimistic - have a great half term now that you have all recovered. Do you have any plans?

Choc - how is DD? It sounds as if the perrins suits her although I do appreciate it is hard work. DD must be very determined and she has made huge progress.

Nickschick - often think of you and Sam. I do hope you start to see some improvement.

In some ways I am still holding my breath in the countdown to half term, but DD is doing so well that I am definitely feeling more confident. It is easier and easier to think of her as being well now, and getting to half term unscathed will be a huge achievement. I don't imagine for one minute that DD ever thinks she will be ill again and it is amazing how quickly they do forget. She has a hockey match this afternoon and will be finishing late (6 o clock), but that doesn't seem to worry her one bit. She still takes homeopathic remedies and I think she looks forward to chats with the homeopath. Anything like that is positive so can't be a bad thing.

Your DCs will get better one way or another , but I do know how desparate you feel while they are suffering. Take heart from our experience and from Optimistic's and Dwardle's as well, I think they come out of this stronger and more mature.

Look forward to hearing from you all..

DD still a bit iffy but in school more than out.
I have got Ofsted Thurs/Fri so am very happy

Dwardle - hope today and tomorrow are ok.

Hi to everyone else - hope you can post soon.

Hi 21again - we're all struggling through to halfterm here. DS2 and I have a return match of lurginess!! DD working her socks off to get her DT coursework done. She's had 6 days off this half term which isn't fab but in the scheme of the illness levels in this neck of the woods is pretty good!
We're going up to our usual haunt this half term hol for a bit of a blow along the beach. Should do us all the world of good.
Hope you are all keeping well and I am so pleased to see that your DD has settled so well into her new school and is staying fit. Long may it continue...

Big wave to everyone else lurking on the thread. Hope your DC are doing OK... Enjoy the hols!

Sorry Dwardle - meant to say I'm rooting for you. I know what being 'Ofstedded' is like so I'm passing you a large glass of cyber red. It's a very good year I'm told!
Roll on tomorrow night....

Hi Optimistic - sorry to hear you and DS are not feeling too good, but the half term break should do wonders for you both. We are going away for a dose of sunshine for a few days. DD2 definitely responds well to the sun and so hopefully it will set her up for the winter.

She has gone off this morning for the last day and has really stood the test this week. Yesterday she coped with Maths and French tests, and the day before had to stand up in front of the English class to talk. She is very tired but it is "normal" tired. DH and I have been of the opinion that if she could get through to half term unscathed, then we really are at the end of all of this. She does have a GCSE Maths module in November which will be her next big hurdle, but she is coping well with the work so it's just a case of waiting to see if she can cope with the pressure.

Hope the half term break helps everyone to feel a bit better .

The lady in Bath referred to is Esther Crawley. A neighbour of ours was 'cured' by the lightening programme.