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!

Positive - when you go to this mecca of teenage shopping (American and highly overpriced) you are met at the door by a 'greeter'. Usually a 17-21 year old muscular manboy stripped to the waist. The teenage girls then have their picture taken with him if they so wish!! The whole shop is set up as a night club with music blaring and is very dark. However trendy a parent you thought you were it is designed to bring you back to reality with a bump as you head for the nearest couch saying' it's noisy in here' and 'can we take this to the light so I can see what colour it is'!!! Horrible but the teenage girls love it even though they can't afford to buy anything in there!!!

Have a successful first week everyone and good luck for the A level, Choc.

Thanks for the explaination. I do think it is somewhere probably to be avoided at all costs, by the sound of it!!!!

Hi all - first day over and all was fine until DD discovered last night that she has lost her year 9 maths file and book. We managed to make up a new one from her sister's old blocks but she has not been herself since, it's as if she is dwelling on this one little incident. I am being very positive and upbeat but I can see where the danger lies here, she is even miserable this morning.

How are everyone else's DDs? Coping I hope.

Hi All,

21 - I hope DD has settled down and can relax and not worry.

Meeting yesterday was good. I really got on with all the staff at the unit and can certainly see they will really care for Olivia and get the best out of her. So refreshing to have this attitude. We have agreed that 1 hour a day is the starting point, although DD has already said that will not be enough because she is well now and is insisting that next Monday she will be going in full time! Yesterday afternoon she went and had a look around and met the staff, was out for 45 minutes max and came home exhausted! First day proper today.
The only down side is that she is not going to be able to do any GCSEs as they are done very intensively with 4 hours English/4 hours maths a week and they do a 2 year course in just 2 terms and really need 100% attendance to get that. As DD is dyslexic and really struggles anyway, we feel this is going to be way too much stress for her. So she will be leaving school next year with no qualifications, which is a bit hard to get my head around, but she wants to go and do childcare and we have been told that she will be able to do that and get some qualifications through that course.
I think the next few weeks will tell us really where she is medically and may well set the scene for the coming winter.

Anyway, my birthday today and DDDDDDH has booked a table at the poshest restaurant in town (ok, not too many to choose from here, but very good!) so off out tonight.

Hope school is going well for you all. dd's and you working there!
Dwardle, say Hi to Jan for me and thank her for putting me on to you lot of crazy lovely ladies!!

Oh schucks put DD's name and I am not supposed to am I????

Happy Birthday Positive . Hope you have a lovely time tonight. Not sure if this will work but here goes - www.arenaflowers.com/product_image/large/305-happy_birthday_balloon.jpg
I should have done something more ambitious but it took me rather a long time to master!!

It has been said before that exams are not the be all and end all, I certainly feel like that now although of course we want our DCs to do well. There are other more important things to consider and if your DD can get into childcare without the GCSEs but do other exams later on, then that will be marvellous. Good luck to her and I am sure the unit will be good for her, I wish there were more places like that in the UK for children with health problems.

Hi to all, how is everyone?

Thank you very much for the balloon 21again!

How is your DD today? Has she gone off to school feeling less stressed?

Happy birthday Positive.
Really dont beat yourself up over the lack of GCSEs. As 21 has said, it's really not the end of the world although we are brainwashed into thinking it is. If she can do a vocational qualification without them that's great. If she does need to do them later on that will also be OK. The most important thing is that she doesnt take on too much too soon. Hope she's Ok with her first proper day.

Hope your DD is less stressed today 21.

My DD is just finishing off her first interactive maths lesson!

Hi Positive and Choc - DD didn't seem too happy this morning but I will be leaving to pick her up shortly so will see then, fingers crossed.

Well done to your DD Choc, the Perrins seems to definitely be helping her .

Well so far so good, I arrived early for pick up and DD was playing hockey - and looked pretty good I must say. She did confess to feeling light headed and hot in the car on the way home but after a drink and snack as soon as she got in she seemed fine. Has done homework and eaten tea and is now watching tv.

This can only be good as she managed to deal with the light headedness without panicking. She could quite conceivably have thought the worst was happening and gone downhill at that stage. I confess to being very watchful and not at all relaxed but hopefully not transferring that on to DD.

Phew 21again. I have to admit I was holding my breath for you both!!
Positive - am glad you are feeling so er well um positive about the unit and have a lovely birthday!

Choc - so glad your DD is doing so much better.

Dwardle - you are probably up to your ears in stuff for the new school year but do post when you can.

Hi and hugs to everyone else on the thread.
, ,

Lovely, Lovely, Lovely, lovely evening yesterday I think I need a birhtday at least once a month! (but age to stay the same!

DD3 has now done 2 days (one hour each day) at the unit. Yesterday she was grey when she arrived home and was absolutely shattered. She had really enjoyed herself and was really positive about it all. Today she was not even able to speak in the car on the way home because she was so exhausted. She was initially quite negative about today, but I think maybe that was because she was so tired. She is now (5 hours rest later) feeling positive again and is full of ideas for an art piece of coursework. I really don't want to dampen her enthusiasm to learn, to be well and to be positive, but I also am really concerned that it seems to be too much already. I am speaking with the head on Friday and also have a consultant appointment on Monday, so will see what they say.

Hope all is well with you all. - not feeling particularly mrs evilish at the moment, though.

Evening all. I've been reading but not posting - I guess I feel that I am struggling to deal with the situation most of the time and have absolutely no helpful insights or wise words of comfort to offer anyone, so please don't think my absence is because I don't value this support thread. I really do.
21 - your dd sounds really well. That's fantastice. Positive, I'm glad your dd has managed to make it in each day. I suppose reading your post I realised we are really all in the same boat. Dd recovered from her fever and has been into school for 1 hr on Monday, and for 1 hr 20 mins today. We have had 3 days during which she has been reasonably happy for most of the time, and I've felt I've got the pacing about right for her. On the day that she didn't go to school ( by design - just trying 1 hr every other day) I took her on a brief trip to the library. You must all know the feeling of running a marathon every day with this thing, and the way that you can feel so buoyed up by a small success ( 1 hr at school and no major meltdown), and then you see all her friends doing normal stuff and realise that there is an enormous mountain to climb. I have been a bit weepy and hopeless today, but I guess that's just how it will be sometimes. Anyway I don't mean to be mopey - I really just wanted to thank you for your concern and let you know how she is doing. I hope that the rest of the week goes well for everyone.

So sorry I have not posted for a while - been a bit preoccupied with work - but have been lurking.
First, glad you had a great birthday, pos - you deserve it (well, we all deserve treats, don't we)
Glad to hear about progress - and there is clearly lots. 21again, your dd sounds great - I do really think I know how you feel about being watchful and not relaxed though and I am sure OM knows just how we feel. If it is any consolation to those of you whose dcs are still not ok, when they are feeling better, the worry still lingers. This thing invades your life - so don't worry about sharing your feelings, Katsh, as we understand. I used to cry on the way to work - in private- about the whole situation.
Light at the end of the tunnel - Positive's dd has been into the centre and they were nice!Choc's dd has been doing her online course, Katsh's dd has made it into school, 21again's has beendoing really well back in the school routine and that's only a summary. Wow!
My dd has gone back to school with gusto. She came into the room last night and asked if it was okay if she went out on Friday night to a concert in town. WOW (This is unheard of and she is only 2 months off being 16!)I said a big yes!
She is great and full of life. I am holding my breath but optimistic.
Big hugs everyone

Things can change just like that can't they? DD broke down Tuesday night in a state (although not a relapse). Lots of fears and emotions coming out and I am very worried about her at the moment. Will try to post when I feel up to it, will value your support ladies. I am struggling .

21again - I'm so sorry to hear DD is having a bit of a crisis. Do you know what caused it or is it a bit of a back to school reality check? By that I mean maybe she now doesn't feel as well as she did/ enormity (sp) of GCSE courses/changed class group etcs. Try not to worry. Teenagers are difficult to get to grips with anyway let alone if you are dealing with the fear of illness. Your DD seemed very 'together' to me and I'm sure she will gather herself up again soon.
My advice would be don't sit at home worrying about her. Get out and about with friends and family, do what you would normally do. Nothing is to be gained by sitting at home worrying....
Am sending you a massive hug. . Try not to be try to be .
Not sure this will help in any way but just wanted to let you know I am lurking around!!

21 - hope you're feeling better today but anyway you're in the right place. Also hope DD is feeling better. Realistically however well our children are doing, there's always going to be this worry for us because, at the end of the day, that's part of what us Mums do.
As I know I've said before, the better they get in someways the more scary it gets (Probably more so for us in some ways), the road ahead has so many potential potholes. I get incredible frightened if I think about it too much. I think all we can do is take each step at a time which is very hard to do. Going back to school is bound to be hard for your DD with all that extra pressure. School is a very tough place to be imo, my yd is already off school today (she has her own non ME type issues and finds school very difficult). I sometimes wonder if there must be an easier way to get educated! Enough ranting. Hope everyone has a good day and weekend if I'm not back before then.

Katsh - hope you are feeling a bit better today. Bring on the weekend!!

all my best wishes 21 x

21again - I'm sorry you are feeling low. I do hope that today has gone well for your dd. Has she managed to keep going to school this week? I hope that you have a lovely weekend . Thanks to the others on the thread for your encouraging words. I'm less weepy and just more tired now . dd made it to school again this morning for 50 mins, so we'vd managed 1 week following our plan and v. rigid pacing. I'm finding that pacing is great for a more predictable week ( so far), but it's incredibly intense and requires enormous commitment ( also a bit hard on my dd1 and ds as limits us all somewhat). Has that been the experience of those of you who have done it?
Choc I'm with you on the " aren't there easier ways to educate them". I do wonder if my dd2 wouldn't be better served by pulling her out of school completely for a term or two, getting home tuition, using her 1 good hour a day for more fun stuff, or meeting her friends, or going to the park with her little brother, and sending her back to school when she won't be the strange child who only comes occasionally and no one really knows. My perfectly healthy dd1 is already having difficult school stuff happening this week, and last night I was ready to pull them both out! Anyway I held off - not quite ready to have all my kids at home all the time!

Katsh - you are quite right about the pacing. It does require an enormous amount of commitment and must be especially hard in some ways when your DC are smaller.
See how the year goes but I do sympathise with your pulling out of school comment. It's just so difficult to take such a radical step and she, of course, may not see it as you do. Have a nice week and well done for having a successful week. Just don't go overdoing it!!

21again - to you. Just a couple of weeks it was me having a wobbly on here, so much love to you. The pressure scale for everyone seems to go through the roof when it is back to school. I really hope you and DD are feeling better today and can relax a little over the weekend.

Katsh - I have to say that a year ago we were really struggling with keeping DD in school. This was before a proper diagnosis and we were fumbling around in the dark really, but after a big barney at the school (me and the head of pastoral care) the first day back after the October half term we took DD home and she did not return. It was the very best thing that we could have done at that time. The pressure was instantly removed form her and us. I had not realised how much pressure we were under until it was removed. I would say that it would be better to remove all pressure and return her to school fit and well and more able to cope whenever that may be. It did not halt the downward spiral of ME at the time, but just made life easier. If you are able to keep DD at home I would say, please seriously consider it.
Pacing is pants as my darlings would say, but it does work! It messes up the whole family and my other dcs have had to really be very tolerant (or have moaned an awful lot) to keep it going. I think if you start off really strictly you can then relax a little and just tighten up if things slip again. That has been our experience anyway.

Here DD has just had the dreaded cbt session, which went ok. DD has admited to her (not me!!) that school for 1 hour a day has absolutely exhausted her! WHOA!! She has admitted that herself!! A plan has been set out for the next 6 weeks increasing to 1.5 hours by the end of this half term and Mrs CBT was hopeful it would work. It is lovely to see DD so happy with school. Yesterday she came home and had enjoyed her first break time at school. Some guys had been playing basketball and she had been sat on a wall watching. DH watched (unknown to DD) from the car as she got off the wall and grabbed the ball and scored a hoop at first touch! The shocked look from all the lads had DH laughing. DD was mightily impressed. This was her first "Sport" moment in 15 months. She used to play basketball for a team amongst all her other sports. Such a small thing, but a HUGE acheivement and success for her.

Mrs Evil is off now, sorry for the long post. I am on here instead of hoovering. (OM-Keep quiet!) Oops too late now kids are home and I have to go out! BYEEEE

I will be back on later if poss. Thankyou so much for your posts everyone it meant a lot. Much has happened .

Hope things are OK 21 ..will look in tomorrow

Hi 21, Hope you are okay - thinking of you
Hi everyone else - how are things?
Great post, Pos Attitude!
Katsh - I am a primary Head - and was v interested to read your posts about school. Your LA should have someone you could talk to about home tutoring - just to get some ideas. There is also so much you can do at home, not just in the formal way - just talking is so powerful!
Also, learning is hard work and schools are hard places to be, even the really good ones. I think exploring the options other than the short sessions at school is a really good idea and not one you should dismiss. Have you spoken to your CFS dr about this? Ours always pushed a holistic approach, putting the child in the middle, rather than her education, and suggested that the families who beat this took that approach.I was re-reading chocs recent posts and do agree, even tho I am a teacher!!!
We are fine - which is VERY scary - still worrying that a crash might come but really hoping it does not.
Big hugs to everyone