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!

optimistic - thanks, I feel we are heading towards withdrawal from school. Today I would normally have sent her, and yet as she didn't have to get dressed and ready, she spent 2hrs lying on the carpet in the sitting room, on lots of cushions, covered by a blanket, watching TV. When I did try to venture out to take ds to a toddler group for 1 hr, she lasted 15 mins before she slumped in a corner asking me to take her home. I think she's been trying to hold herself together at school, and we get the impact of that from 3pm every day. I hope that removing some of the pressure will help. We'll see.
Our homestart volunteer comes for 2 hrs each week. It is a bit odd as the volunteers I think are told not to disclose much about themselves and that could lead to a very unbalanced relationship. The volunteer knows the difficult detail of the client's life, because after all they are with you because you're not coping, and you know nothing but the first name of the person. Fortunately my volunteer is quite open, and has told me that she lives in the next road and has told me about her previous job and her family. I have a friend who has had to push to even find out what town her volunteer comes from, and she finds the imbalance v. hard to deal with. Again, we've been fortunate, as although you are not supposed to leave your children with the volunteer ( "they are not babysitters", was emphasised to me),on her second visit my lovely lady sent me out to walk the dog, as she said I needed fresh air! On another occasion she was going to come with me to one of dd's appointments to look after ds, but in fact she suggested she could just take him to the local park and give him his lunch at home. She now comes in an afternoon so that once a week I can collect my oldest dd from school, and dd2 stays in the house with her. It still is a bit strange, but the children love her, and it gives me a little break and a bit of company if I want it. I would feel better about it if we had begun by having an introduction where information was shared by both of us so that the relationship began on a more level footing, but I can understand why volunteers may want to maintain privacy. I think they are a great organisation, and I'm sure you'd be a real help to someone.

Thanks for all that info. As you can tell from on here I am a very open person so I would find it nigh on impossible not to have that balanced relationship. I'm long in the tooth so I don't mind the invasion of privacy at all. I guess Homestart are trying to be PC!!!!

have a good weekend!

Hi to all, just catching up on the posts. Katsh your homestart volunteer sounds brilliant - someone who uses a bit of initiative and common sense and lets you get out a bit too. Wish there was more of it about! I've been thinking about how we coped as a family and we have probably been really lucky in many ways. DD1 is older (now 6th form) and the two girls have always been close. She would spend time with DD2 when she came home from school - telling her about the day etc and even doing her homework in DD2's bedroom. That was a huge help to me and also meant DD1 didn't feel too isolated.

I was lucky in that DH works from home a lot of the time so he helped with the school run and it meant I could get out. CFS did mean that we didn't go out together as a family very often. We naturally stopped planning anything but obviously DD2 is older than your children and I could leave her when I needed to. To be honest I didn't really want to leave her and felt almost that if she couldn't get out then I shouldn't too. Sounds a bit ridiculous now but that's how it was. DH and I had many long conversations about how to try to manage the illness - and several arguments as well. He was certainly very pro-active (as is his nature) making lists and plans etc for pacing activities, and it does help to feel you are doing something and not being completely helpless. He always attacks things head-on and was the same with CFS. Keeping a diary also helps and after several months we were able to identify different events and patterns that had had a negative effect.

I am not the one to advise on the education side of things - Dwardle is doing a brilliant job there - but as far as we are concerned school was causing far too much pressure, and when the pressure was removed things got better.

Talking about pressure - DD got through the modules on Friday and was on fine form afterwards. She found the exams themselves really hard and says her brain just went blank. Considering the amount of school she has missed, and the change of school, this is not important. All she needs to do is to carry on as she has been doing and hopefully she will keep on improving.

I hope the weekend goes well for you all, post soon..

Hi all - Katsh - sounds like you are getting the right kinds of support. Please don't stress about your dd not being in school. Like 21again, once we removed pressure about school, we began to make some progress.
21again - exactly that happened to dd in her first gcse last week but she did much better in the second. But yes - it actually doesn't matter.dd's goal is to get enough to get into 6th form - but if she doesn,t, then there is a plan b!

DD is sweet 16 today and has had a wonderful celebration weekend.
Her younger brother crowned it all by managing to break his ankle today - playing rugby.

Hi all - Katsh - sounds like you are getting the right kinds of support. Please don't stress about your dd not being in school. Like 21again, once we removed pressure about school, we began to make some progress.
21again - exactly that happened to dd in her first gcse last week but she did much better in the second. But yes - it actually doesn't matter.dd's goal is to get enough to get into 6th form - but if she doesn,t, then there is a plan b!

DD is sweet 16 today and has had a wonderful celebration weekend.
Her younger brother crowned it all by managing to break his ankle today - playing rugby.

Dwardle Happy Birthday to your DD and I'm glad she had a really good weekend , but sorry about DS's ankle I hope it heals quickly .

Happy Birthday to Dwardle's DD. Sorry to hear about DS' ankle. Your family are really not having the best few months are you?

Hope this week has been better for you KAtsh, too. How often are you seeing the therapist?

We survived another meeting with mrs CBT. DD and I sat and discussed how to play it before she arrived and it was ok. We didn't give an inch!! Felt very assertive and for the first time I felt in control of the meeting and ultimately in control of DDs plan.

DD is slipping badly, some bad days and some not so bad and a few passable days. That is about as far as I will go at the moment. Reducing the schooling has made a huge difference yet again though and she is not quite so likely to explode at the slightest thing!

Would you believe me if I said that the school have messed up yet again and have not told half the people about the final change of review date, so half professionals are going this week, and us and a few others next. That place could not organise a **up in a brewery! - or maybe it is because they do organise so many of them, they are so useless at everything else!!

Must get off now. Teenager in need o comp for msn "homework" . Hope you all ahve a good week.

Dwardle - sorry to hear about DS! My DS1 broke his metatarsal 4 weeks ago and is going back to rugby this weekend!

PA - about your DD for you and the crappy school you have to deal with. Sending you hugs and good wishes for some improvement soon....

Hi to all - I do hope you are seeing some improvement.

Hi all,

Hi Choc - How are things going with Perrins? I am now looking at options as DD is slipping and is very reluctant to even consider the LP. - DH against LP too, so feeling as if I can't really push too much more in that direction.

21 - sorry for my memory loss, your DD didn't "do" LP did she? Did you just take it a step at a time, or did you use any other methods, treatment etc?

Katsh - How are things now? Has school been reduced, how has that gone? I hope you are still getting the help from the volunteer. She sounds like a gem!

I hope everyone else is doing OK.

DD3's statement review is next Thursday at the school. Feel a bit like Daniel going into the lions den, but paed is coming too and I know she won't put up with any of the usual shananigans.
I think I need a name change to give-up-on-being-positive-this-is-just-crap-and-I-am-fed-up! One year on since DD went into school for the last time. I know she has vastly improved since the first 5 months of the year, but the tunnel seems to be going on forever and the light getting dimmer and more distant at the end! Will we ever pick up the pieces of her life again? I know she won't ever go back to the life she had and I just see all those dreams and hopes she had for her future just being washed away one by one and nothing replacing them. Where on earth will she be in a years time, in 3 years...? It is all going to be so hard for her and it all seems so unfair. She has really struggled all through school due to dyslexia and dyspraxia and the one thing she succeeded in and felt confident in was her sport. Now she says she will never do any sport again. She can't do the course at college she wanted to do next year because she wont have acheived the entry level of education. I can just see her struggling for many years to come, even when she is fit and healthy.

Sorry a bit of a negative post as that is how I am feeling.

So sorry you are feeling so low PAO. I know how desperate it can feel - I've been there too.
I don't have any answers for you but just wanted to send you hugs and loads of support.
The only thing I would say, and I'm sure you know it, is try not to look ahead too much. There's no point and it just makes everything seem so much worse.
It's great that you can have an outlet on here though so don't stop if it helps.
Your DD will have a good and fruitful life you know just maybe not in the way you expected for now...

Have a happy and peaceful weekend.
x

Positive - Hugs to you. No we didn't do LP, but as well as pacing I first took DD to a herbalist and then after she crashed even more severely (following the flu jab) we started homeopathy and CBT.

The CBT was on the advice of our consultant as we could see a pattern of worse symptoms as soon as the pressure and stress became too much. CBT helped but didn't really do it all. From our perspective it was a case of removing the main problem (school) and then building up again slowly. Indeed even at the end we had to take her particular school out of the equation in order for her to completely recover (not just because of the school work but because we dug really deeply and found small problems that we had previously been unaware of). She is now enjoying what seems to be a perfectly normal life and - importantly - is dealing with the normal everyday pressures that she comes up against.

DD still enjoys monthly chats with her homeopath which I do not attend but which give her someone to let off steam to. The homeopath is someone I have got to know well and she doesn't attempt to counsel DD but it all helps in some way.

I hope this gives you something to think about. They are all different and will find different ways of recovering. I think that removing the pressure is key, and a friend who regularly speaks to Prof Findley says that he preaches that all the time.

Have to go as DH needs the computer, beback later.

Positive - sorry for the abrupt finish there, but their needs are always greater!!

I am so sorry that you are feeling so down and I understand your feelings and frustrations, I have been exactly the same and know how desperate it is. DD was always very accepting when she was feeling fatigued, she never fought it, but when she felt better she never believed she was going to be ill again. She certainly believed in the homeopathy and always said that it was the one thing that helped her. Maybe the placebo effect has something to do with it - the mind is very powerful and our thoughts and feelings can definitely affect our health.

I always felt that LP was the way to go but it obviously wasn't for our DD, and it isn't for everyone. I know that Optimistic has said that because their bodies are changing so rapidly anyway, they will get over this naturally, and I think there is a great deal of truth in that.

Looking back at the diary we kept for DD and all the spreadsheets that DH made up for planning the pacing etc I can see that we were always careful not to push her to do anything that would make her feel worse. That means that if a few hours school left her exhausted and having to rest then we would stop and reduce it to something she could cope with. The problem with all of this is that it is a long drawn out affair. At one time we did consider taking her out of school altogether and resting her up and then getting her back in the year below.

One thing that does stick in my mind is how well your DD was during the Summer. I remember your post about her going bowling and how vibrant and glowing she looked. Think about that - are there any clues as to why she was well as opposed to why she is ill now. Can you work from that, does it give you anything to go on?

I apologise for rambling but hope you can get something positive from this,

Thank you so much for your positive comments. I am only on here quickly as we are off out tonight and I have to go and get ready, but I just read your posts and wanted to say a huge thank you.

Dd was well in the summer for a few hours at a time and we all assumed that this would just increase. I really can't understand where things have gone so wrong again. She does not seem to have any pressure from education. She loves going to the specialist unit and is attending just 2 sessions one hour each per week. She has always pushed herself too much and had wanted to go full time, but agreed that the daily sessions of 1 hour 10 mins was too much. What I don't understand is that what we see is the only pressure is from herself and her frustration at not being able to do what she wants to do, although in a way she has now given up making plans. She used to plan to see friends, but would have to cancel at least three quarters of the time because she could not do it, due to feeling so fatigued, sometimes by actually getting dressed to go out, she could not go out as all her energy was used up. Her life is all within the house apart from the education sessions.

Sorry, I didn't want to come and rant again, I am just "thinking" on here, I suppose. My DH is brilliant and very supportive. We are both quite organisers and hate the idea that this is totally out of our control. 21 I laughed at your description of spreadsheets, because this is exactly like DH. I have had to stop him doing it because it was becoming nearly obsessive with checking times and energy levels and staring at his charts for ages. I am sure that wasn't too healthy!

I feel so sorry for our other DCs. They seem to get teh wrong end of DDs frustrations a lot of the time, especially DD2 (closest in age). I think this probably has something to do with DD3 perhaps feeling a little envious of her social life and the fact that she can still do everything that DD3 has ahd to give up. I have noticed that when DD2 has had a sports event which DD3 would have been in she is particularly nasty to her. Also, if DD2 goes out with friends and DD3 is feeling low. I have broached the subject with DD3 and discussed that maybe she might be feeling a little envious, but DD3 won't accept that.

Anyway off out for an evening, so thank you all once again. I will feel positive again. DD WILL get better.

Hope your weekends are going well. I love to hear how your DDs are all doing, it gives me hope, so please keep posting.

positive - I hope that you have had a good night out. I'm sorry that you and dd3 are having such a hard time. I can understand the desire to name change but I think your current one is so good. It always encourages me to be more positive. Please come and do your thinking on this thread - it's such a great outlet for the things we can't say elsewhere, and it allows us to try to give you some support, in the same way that you are always there to support us.
I hope that tomorrow is a better day for you all.

We are still muddling on. Reduced school to 2 x 1hr 20 but I think dd is still really struggling with it. I have (finally) as you have all advised, started trying to keep a detailed daily symptom diary. As an ex-lawyer it feels like trying to put a case together for the EWO in 3 weeks time, so I'm taking photos as well, so that I can see the change between good and bad days.
DD had play therapy this week, and loved it! She said she had so much fun she nearly forgot that she had CFS . For that alone it's worth doing.

Hi everyone
Have also had a less than brilliant week. Think dd paid the price for behaving normally and crashed on Monday - she looked worse than I have seen her since July. She has missed quite a bit of school this week, but has had points when she has been fine.Chat with LP practitioner helped her lots.She is good today and we have just been to Ikea, DD is now 'cleaning her room'
Positive - I so understand what you are saying and have times when I have felt just like that. Even though dd is not fully better, I am still supportive of LP because she is so much better than she was. But - you cannot force your dd to do something she does not want to!
I still find it very hard when I am in the company of certain people and they start talking about their dcs achievements. Ha. For me, an achievement would be seeing dd at school every day for a week.
This is certainly the place to be if you are feeling fed up - everyone is so supportive in a meaningful way.
Really feel for you re siblings. Have not really had this with mine as they are so different and ds is not doing things that dd would want to (am laughing a lot as I write this!!!) so not best placed to offer thoughts - but others may?
Katsh - sounds like a plan to me! Glad the play therapy worked - that must have felt great. Have you got any further re home schooling or is that part of the EWO discussion?
Thanks for your best wishes re ds - he is coping very well and is back at school! He is just discovering that people are nice to him when they see his crutches and I think the little horror may be milking it!
Keep smiling everyone . Positive - I think it is perfectly acceptable to feel like you do - am glad you could share it. Is today any better? Hope you had a good evening.

Dwardle - sorry your Dd has been struggling but it's good that she can contact the LP practitioner and hopefully that will keep her on track. It is hard still having the worry of whether or not she is going to be able to cope. Glad that your DS is receiving lots of sympathy - they're not daft are they?

Positive I hope you had a good evening out and managed to relax for a while. Is DD feeling any better? Please come on and "rant" any time you want, it's a good place to let off steam and we all know how you feel.

Katsh how often is DD going to the play therapy? It sounds just what she needs.

Optimistic how is everyone?

Hi to anyone else.

DD is not in a good frame of mind tonight. She had a busy weekend (her choice) but is probably suffering as a consequence today and has lots of homework. I am wondering how she will cope with this but I guess that learning to deal with the pressure is part of the healing process.

Post soon everyone

Sorry things aren't so good for your DDs Dwardle and 21. Hope things improve again soon.

I had a good long talk with DDs Paediatrician today. She is so good! She said that we should concentrate on what she can do now compared to the girl sat on the sofa unable to support her head/feed herself/stand/talk and sometimes swallow that we had in June, and not compare to how she was in August, or how we think she should be. I know it is so simple, but she has reassured me and I am feeling better. We also discussed tactics for meeting on Thursday at the school. She is well aware of how we have been treated and will stand up for DD.

DD had arranged to see friends tonight, had a bath to ge ready and was too tired to get dressed, so cancelled again. BUT she is far happier in herself than she was a few weeks ago.

Off to bed now, hi to Katsch - Its too lat eI can't spell, sorry!

Good news Positive at last and I am so glad your Paed is giving the support you so badly need. Good luck for tomorrow, let us know how it all goes.

DD was better on Tuesday and played well in a hockey match. I think it is homework that gets her down, although she doesn't get anything like as much as at her old school. Tueday was quite a busy night again, but today she has barely any so is in a much better mood. It's just something she will have to deal with and to be honest she does seem to be doing so.

Hi to everyone, how are things?

Good luck for today Positive! It's good that your paed has given you some perspective. It's very helpful when someone looks at the situation objectively isn't it?
Glad your DD is still doing well 21again.
My DD is fine. She, too, is snowed under with work and I find myself 'talking down' the stress levels a lot! She is so much better about all that though and can see that getting in a state is no good at all. She knows that I will phone and ask for extensions etc whenever she wants as I don't want her ill again. I am finding that the days she has off coincide greatly with the start of her period. eg she was off on Monday and I put it down to a sleepover on Friday followed by a long shopping trip and another late night. It then transpired that she started her period that day... The next day she was absolutely fine!All simple stuff but I still find myself in a panic when she says she is too ill for school!!
Positive - is it not well documented that ME sufferers get worse over Autumn and Winter? That's what I thought and it would explain your DDs decline. She isn't nearly as bad tho is she? I would think she will perk up come the Spring and hopefully not be so bad again next year.....
How are you and yours Katsch?

Thanks for all the support for the meeting. It didn't go exactly smoothly, but we got the outcome we wanted. DDs paed consultant yet again came up trumps and was brilliant. School yet again were crap!!

DD insisted on coming into the meeting and sittinag all through it. After five minuts she had a glazed look and we had "lost" her! But she wanted to show everyone that she was "well".

She does seem to have improved with the reduced amount of what we are doing now. She is at the unit for 1 hour twice a week, home tutor one hour. The rest of the time she is able to cope with being around the house. If she does anything more, like yesterday then she is not so good.

OM - Yes it is well documented that symptons get worse in Autumn/winter. I just hope we have gone as low as she is going to this year, then back up again as soon as spring comes. my positive attitude is beginning to return.

It is encouraging that you DDs are well, enjoying life and coping with stresses, OM and 21. I hope your DD is back on track Dwardle. She has done so well! And Katsh, I am pleased the play therapy is going down well. I hope DD is doing ok.

HAve a good weekend everyone.

Glad for you Positive that the meeting went well and that your consultant helped so much , and I hope you get more support from the school in future.

Optimistic I know what you mean about panicking when they seem ill. I think we have been incredibly fortunate that DD has not contracted any of the nasty bugs going around at the moment. Some of her friends have been off school feeling sick and dizzy so I am waiting for that one to rear its ugly head. On a better note, we went to parents' evening last night and DD's teachers were very pleased with her progress. GCSE science modules coming up in January and it's good that she has the holiday to revise (that will be interesting ).

Dwardle and Katsh Hope things are ok, and Choc and Nickschick if you are around how are DCs?

Hi everyone - hope you are all bearing up. We had an awful week last week. Looking back, it is all about pressure and how dd bears up when it is intense. She is in a much better place this week, partly due to a fab senior teacher who really gets her and is senior enough to be able to sort things out - like saying that her coursework takes precedence over mocks. How helpful.Then dd was able to take a step back and to calm down and actually get some work done!Which of course helped her state of mind.
She also has science modules in Jan - at the end thank heavens.But, the thing is that she is still very sensitive to pressure and I guess that will stay for a good while yet. Do others out there see the same in their dcs?
Positive - delighted that you got the outcome you and dd deserved.OM and 21 - glad things seem to be going okay with yr dds. Katsh and Choc - how are things?

Dwardle - in answer to your question, DD is MUCH better regarding pressure building up but she is only in Y10 so we'll have to wait and see. She does have an enormous amount of coursework for DT which is compulsory in her school BUT done in Y10. I spend a lot of time diffusing the stress levels which I'm sure you do too. I have to say that after LP she does 'get it' and does realise there's more to life iykwim! You might want to tell your DD that modules are so much better than the exams my DS did. He did 9 science exams in one hit last summer. Interestingly he had no fewer than 33 exams while his girlfriend had 11!!At least the module way they are spread out....

~Sorry - haven't managed to catch up - our internet has been down for a while, and have 2 mins to say we haven't dropped off the face of the earth, but dd has stopped school, and we are mostly ok. Hope everyone is alright. Will try to get on later in the week.