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 all

Dwardle - I hope this week is better than last.

Katsh - I hope you feel relieved about the pressure of school being lifted. It may not be for long and she can get back to it, but while she's off its one less thing to have to cope with.

Here, DD is certainly improved with the reduction in the unit hours over the past few weeks. She has returned to her normal happy self, rather than a stressed out bomb! So many thimes, though, she has planned to go out, but just getting ready has done her in and she has not actually gone out the door. I have just dropped her at the cinema, which is fantastic. Little steps, little steps.
I had a meeting with the Children's Disability Team this afternoon, which was entertaining! I have become convinvced that entry into social services needs a degree in lack of common sense, an inability to understand, A student in jumping to conclusions, A in non-communication and a refusal to look at facts before you open your mouth! - A bit like the staff at DD's school. (actually, people on here have restored my faith in teaching staff considerably, but that's digressing.) Classic moment when the head social worker from the team asked if DD had reduced her time at school because she "couldn't be bothered!" While my jaw was only half was to the floor in shock, the head of the education unit jumped up and put him right in no uncertain terms. I am not often lost for words, but her long tirade on DDs behalf was quite spectacular to say the least. I ended up laughing out loud and i am sure they though I was slightly unbalanced. It is so nice to have her and the paed on our side. I really don't know what I would do without them. These endless run of meetings discussing every detail of DDs life/future/plans/care are awful, but commical moments like that made it worthwhile today. After that it was decided that she needs the care she is getting and it will continue for the next 6 months at least.

I hope you are all ok and not getting too soggy and cold.

Waves to OM, 21 and CHoc - How are things with your DD now?

What's with the new name
Far too cheery for me!
Not much better this week - all to do with work & school. Would like to tell her not to have to bother, but then she would not get gcses and she is really not that bad any more. Her problems are more about sorethroats and headache than anything else. So hard to know what to do.
Am shocked by how stupid some people are - well, am not but always hope they will not be as stupid as they end up being! Am so glad you have people on your side who say what they think!

Where is everyone?

Had hard week culminating in dd making decision - with our full support - to drop 2 more gcses. Now down to 6.She has not been good and we had very helpful session with lovely paediatrician. Here's hoping it will help!

Got my school xmas fayre this eve Roll on 9pm when I hope I will be home with v large glass of red stuff!

Feeling a bit wobbly about all this but know right decision made Think 6 good grades more sensible than her crashing out - which is where we seem to be heading.

Dwardle - A difficult decision, I am sure, but it sounds like a sensible choice to me. If DD ends up taking some more next year, that's better than her crashing out of everything and ending up with nothing this year, surely. She is a bright girl and will do well. She has come so far.
Hope the fayre is not too traumatic! Enjoy the bucket glass of wine!

Here, DD is certainly coping better still. looking very pale though. So far the whole family have somehow managed to avoid all the nasty virus' and bugs that are doing the rounds. Absolutely petrified of DD3 catching anything that may send her backwards.

I was asked to go to the school today to speak with a lady about our "issues" with the school. Very positive meeting. She admitted that lies had been told to us and that we had been let down and "serious mistakes" had been made. I think this may have been their attempt at calming us down before we went so far as to put another complaint in! But i felt listened to for the first time in 15 months and she really did seem to understand our frustrations.

have a good weekend everyone. How are things Katsh, Hi to OM, 21 and choc.

Hi all, haven't been able to spend much time on computer lately but am back now .

Am shocked at what you have been told Positive about being lied to, especially in the light of school dealing with a seriously ill child. It is so frustrating for you and you must be feeling very angry. I certainly wouldn't blame you if you did make a complaint but I can understand you probably don't need any more aggravation. I hope DD continues to improve and the Christmas break will be good for all of you.

Dwardle - 6 gcse subjects is still very good considering what DD has been through and how much school she has missed. She should be proud of what she has achieved so far and can always think about doing more later on if she really wants to. She is doing amazingly well and I hope she copes well in January.

My DD also has the science modules in January and doesn't seem remotely interested in doing any work for them (a mock exam in two week's time)! Do I tell her to get on with it or just let her relax and not worry. When they are ill you just want them better, but when they are better you obviously can't carry on as if they are still ill and must never again be under pressure . There is a happy medium to be found somewhere I think.

Hi to Katsh Optimistic and Choc how are things?

HI all, sorry I've been a bit awol Dwardle when you've needed a bit of support, I'm sure you've made the right decision.Presumably DD thinks it's the right decision? I know I ask you a lot but have you talked to the LP trainer about all this again? Are you sure you are not muddling it all up keeping going with a Paed as well as doing LP? You just seem to be mixing 2 systems that are completely different to one another....
Sorry to be a bit devil's advocate and tell me to go away if you like!!

Positive - so glad you've had your bit of 'closure' now you can move on which is nice for you.

Hope you both have good weekends.

Hi to everyone else on the thread!

x posts with 21again!
You're absolutely right about finding a happy medium with the pressure issue. Of course you have to pressure a bit if you feel your DD is well as we both do. Otherwise it is not normal life is it? It's about being able to deal with and rationalise the pressure as it comes up. Our DC have had a lot to contend with and so I feel they are more able than most kids of their age to cope with the pressure. It's great that your DD is relaxed but it is your job as a parent to make sure she's not being a lazy wotsit isn't it??

Hi all.
Thanks for all your comments - I do know exactly what you mean 21again - and it was reminding dd about what she had to do that helped to cause the meltdown - so she was not being lazy - just rather unwell as all the cfs symptoms came surging back.
In answer to your point, OM, dd has been struggling since Sept and has talked to LP trainer several times and had a string of emails with her - and that has been her strategy for coping. So I don't feel we've muddled things as dd has been using LP. What I don't think I can do is to let her carry on as she has been getting more and more stressed, unwell and upset. I really worrried that she would feel that LP had failed - or more importantly that she was not using LP effectively- I don't want her to feel that at all as I think LP is great. The paed was totally pro LP - and has had other patients use it too - and besides that, they were very pro that approach in the first place. They had a psychotherapist attached to their team until funding was withdrawn - so the team was very open to LP. We have seen paed twice since LP - one to touch base about how well dd was doing and once as they were keen to follow up - so we were not muddling approaches as they were listening to us, rather than telling dd to do anything diff. The decision about school is because dd isn't coping and seems to be in the pit more than out of it. To be honest, the idea was more dd's than anyone else's - it was the questioning and discussion that drew out the next step and school are neither surprised or anti - they had been worrying about how she was coping and how much she was missing. Her attendance is down to about 60%
I think this step may help her to focus on her LP strategies and to stay out of the pit.
I do see what you are saying but feel like we could not let this go on any more. Had a much better weekend - dd made it to clothes show and has been doing coursework all day today - with breaks, obviously She is smiling again- hurray

Just to add to previous post, dd says LP cured the tiredness and the panic completely - just not the school-related stress, so we have helped with that one. Would HATE anyone to think LP does not work - because it does.

Being a LP veteran Dwardle I know just where your DD is coming from. What tends to happen with LP is that it does sort out the ME/CFS symptons but then other issues arise often the ones that helped to make us ill. The school stress and reaction to them may have helped to make her poorly in the first place so LP now needs to be applied to the daily events not just the ME/CFS.

Do not let her loose faith in LP she just needs to apply it at different times now than she did before. I am not a practioner so I could be well off track here but she could try the brain rehearsal for times of school stress and she will slowly see things differently. It sounds like she is still in contact with her practioner so do keep hassling the practioner so that she can help. This is just a hiccup and very common as she has not had to use LP in this situation.

But who needs more than 6 GCSE anyway! you only need 5 to go on to further education so my new motto is enjoy life and make sure you have time to LP!

Please don't feel I am lecturing or anything just I have been there and got through it.

What you've said makes perfect sense now Dwardle and I'm sorry if I overstepped the mark with the comments I made - I certainly didn't mean to interfere just to provide an objective viewpoint from what you had written.
I know you are because your DD is down to 60 per cent but actually that is fantastic really isn't it when you think what it could be!
I'm glad your DD has had a better weekend. My DD is at the Jingle Bell Ball . Only 2 weeks till the end of term! Yippee!
xx

OM and Dinamum - thank you so much for your comments - OM you did not overstep the mark - made me think and ask dd some v useful questions Dinamum - that was so helpful and made me think that we are on the right tracks
Thanks again - what would we do without this thread!!!
Hope yr dd has great ballme too
Yes - only 2 weeks to go - will we make it?

Positively festive
So preoccupied forgot to add that was so pleased that dd's ex school have finally admitted they were WRONG. That is a help and am so glad you were finally listened to. Sounds like dd is feeling a bit brighter. Hope you had a good weekend.

Dinamum I xposted with you but I'm so glad you came on. It is so useful having someone that comes on to this thread every now and then who has actually experienced what our DC are/have gone through. What you say regarding LP makes perfect sense and I suppose I am lucky that before DD was ill she didn't particularly suffer from stress or too high expectations for herself, therefore she is able to 'process' school effectively!!

Dwardle - I'm glad to hear your DD was smiling on Sunday and hope that is still the case. Obviously she still needs to apply LP regularly - and I wish I knew more about it so I could join in the conversations!

I consider that my DD is very fortunate to be as well as she is - having not done LP - but I can see from what you are all saying that it is useful to be able to apply the process at different times, and I wish we had those tools. Maybe I should train to be a practitioner .

DD is off to the Clothes Show tomorrow so she is looking forward to that. She actually did get down to some revision at the weekend and is in good spirits tonight. I must say I am looking forward to the Christmas holidays when she can recharge her batteries. The longer the period of good health that she enjoys, the more likely I think she will stay well although I do wonder what the stress of GCSEs will do to her. She is certainly a different person both mentally and physically, so I think that is a good sign that she will indeed cope.

Hi to everyone...

Forgot to add - hi to Dinamum and thanks for all the useful advice you are giving.

Guys the one positive thing I have got out of ME is all the lovely people I have met. This forum no exception I hoped you didn't feel that I was butting in but you are all so welcoming thanks!

21again there is a new career beckoning!

DD now has shocking cold! Eau de Olbas oil nearly knocked me out when I went in her room this am!
Dinamum you are not butting in!

dwardle - I came on to write how pleased I am that your DD was happy again! Hope the cold is just anothe glitch, and she bounces back quickly. Eau de olbas!!! Hmmmm Lovely!!!

DD still coping if nothing else is put into her week apart form her 2x 1hour 10 mins at the education unit and 1 hour home tuition. Anything else and she seems to take a step backwards, but I am pleased we have got to that level of knowing how much she can do. She should have increased by another 10 minutes each session this week, but has not felt up to doing that, so we have stayed the same. While she is stable she is happy and life is far less stressful living with her. No more walking on eggshells and waiting for the timebomb to go off!

She is now effectively housebound for a week as the council have decided to dig up our road and we can't get the car near enough for her to walk to. There is an old lady up the road who is disabled and they have left her path clear for her car, but did not seem to undersand when I tried to explain that a fit looking 15 year old was actually unable to walk 100 yards up hill to the car! She is not a happy bunny about that one!

I had a discussion with Mrs CBT toady, who was unable to get here because of the road. She has hinted that she thinks she will back out of working with DD. Suits me just fine! She said that we seem to have our own agenda and thinks that her input is not taken into consideration. I replied that I felt I knew DD better and I was happy to take on the pacing and planning myself. She did then proceed to tell me that I needed to ensure DD was increasing her times regularly and pushing herself to make it to college full time next September! I can't say how she will be tomorrow, let alone how much she will be up to in 10 months time! She will be no loss and make life a lot less stressful! Silly woman!!!!!!

I hope you are all well and looking forward to the holidays. I am sure you must be manic at your schools with all the fun activities in primary schools OM & Dwardle.
hi to everyone here. Good to have your input Dinamum. Its great to her from someone who has suffered and come through the other side. It helps me to support DD in a way.

Positive glad to hear DD is coping and in a better frame of mind. Hopefully you have found a baseline and she can get used to that before trying to increase. Your CBT lady doesn't sound as if she has had much experience with chronic fatigue sufferers,maybe it's time to find another!

Dwardle so sorry DD is suffering with another bug. She does seem to be a bit vulnerable at the moment, although there are so many bugs around at the moment it is impossible to avoid them all.

DD is at home today - she woke up feeling sick and dizzy. She has had a sleep this morning but isn't feeling any better yet. I did post a couple of weeks ago saying that some of DD's friends had been away from school feeling sick and dizzy, so hopefully that is all it is, time will tell.

Hi to everyone else, how are things?

Hi to all, a very busy time for most people but hope some of you can catch up soon.

DD had one day at home but was fine the next day. She is still at school as I write, staying on for a film evening with her friends. She will be back later and hopefully still in good spirits. She had a mock science module today so hope that went well.

I hope you are all coping well .

Hi all
Glad to hear yr dd is having a good time after her bad day last week,21again.
Hope yr dd is ok Posfestive! Think you would be much better off without Mrs CBT. She really has not got it , has she! The idea of setting targets and thinking that will make it all work is simply laughable! In my experience, it usually achieves the exact opposite! How is your road?!
dd has just recovered from her yuk cold and actually went to school for a whole day without a stress today!Hurray .
Just ds now - has still got his virus - 3rd flareup since end of Nov. Am trying to stay calm. An SO tired - can we get to the endof term in one piece? Think I need to apply LP to myself!
Trying to persuade dh that trollbeads would make a lovely xmas present!

Dwardle - please allow me to show my ignorance, what on earth are Trollbeads? They don't sound very nice. Are you sure you want some?

Only three more days to go, well two for some of my kids!

Still can't get DD out during the day, but we can sort of do a slalem with the car around the bollards in the evening, so yesterday i drove her to meet a friend at a shop, sat outside for 15 minutes, then drove her home again. It was good for her to do some real Christmas shopping, rather than on-line! She is complaining of feeling really knackered today and confused about why as she hasn't really done anything and has been doing less than normal due to being stuck here! The whole family must be the only people in the country not to have suffered from any coughs/colds/flu since September! I can't believe it! I have been waiting for just one of them to catch something and for it to attack them all and have been worried about how DD3 would be, but so far, a big fat O!! Certainly not complaining!

Hope you all get to the Christmas holidays in one piece! Have a good week.

Hello - I had a peek at Trollbeads - look very nice - I hope you get them .
We are still here - in snow! It's all been a bit challenging over the past few weeks, and I've not been able to write about it, even to you lovely ladies. DD is off school totally, and that has been much better for her, although I lost my 2 hrs each week of escape from the house, and time with my toddler out of the house. Consequently turbo charged 2 yr old has been less happy, as more cooped up at home. Additionally my older dd has a suspected diagnosis of a nasty disease of the nervous system, following an injury in September, so I'm reeling once again. Anyway just have to get up each morning and keep going. Hope you are all ok . x

I had to look up Trollbeads as well - and they do look lovely - I hope you get some Dwardle. Glad to hear DD is over her cold and I hope that DS recovers quickly too.

Katsh - I am so sorry to hear about the problems with your older DD. How are you coping? Is there anyone to help you? I do hope that if younger DD is now off school you will see an improvement in her health which will make things easier for you to deal with. Thinking of you and sending you (((hugs))).

Positive - glad to hear DD is keeping up with her friends. I do know that my DD's friends were so supportive and made sure they kept in touch regularly, and it made a huge difference to her. The holidays are nearly here and I hope that will make a difference.

Hi to Optimistic and Choc and Nickschick how are things?

DD's last day today and she has coped brilliantly with everything. She got a B for her science mock exam - pretty good considering she did barely any revision and still has some gaps in her knowledge. DD1 is planning to revise over the hols for her AS science modules and has encouraged DD2 to revise with her. That didn't go down too well with DD2 but I think she will settle down and get a fair bit done. She has played hockey again this week and they won convincingly and I really do feel confident that she is better. We do keep a careful eye on her at times of pressure, and her school are well aware of her history and they watch her as well.

I do hope that you are all heading towards this same situation soon. I know only too well the feelings of frustration and sadness that come with any illness that DCs suffer, but I think cfs is incredibly difficult to deal with. Take heart - they will get better, but some take longer than others.