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!

I think it is absolutely fantastic that your 2 DDs have done so well and boast as much as you like!

I hope it gives them a really well deserved boost as well to know that they have acheived this because of their hard work, determination and despite CFS. Nobody else can take any credit! Well done!

DD here is having quite a good day again. She has improved so quickly that I cant quite believe it. Back to holding my breath. This is going to sound absolutely awful, but in a way, I find the bad days easier, cos I know where I am with them. As much as I love seeing her smile and happy and walking around, I cant help wondering when she will crash down. At least when it happens, you know its happened and get on with it! I really dont mean that I want her to be down, cos I so do not! Do you understand me, or am I talking rubbish.

Talking of me talking rubbish - seems to be a bit of a theme with me!!, apparently the braces thing was on a bbc programme about 6 years ago. So I feel totally vindicated and can hold my head up high! Although DD has braces, I think we fit so classically into the glandular fever CFS/ME pattern that I have stopped looking into it an clutching at straws. I suppose I was just hoping for a quick easy fix.

I will say goodbye for now before I get verbal diarrhoea! Off out with a friend tonight. Nice country pub, and large glass with a good friend. DH in charge here. yeah!!!

Positive - have a nice evening. Don't think I meant calling head power crazed whatever. The bits before that!!
Try not to let your fear of a crash spoil the good days. But we all DO know exactly what you mean!

21again - glad your DD is so much better.

Dwardle - done all your reports?? Have I? No, but I have got until Friday!! Hope your DD is well at the moment.

Nickschick/Katsh - how are you both???

Positive - have a nice evening. Don't think I meant calling head power crazed whatever. The bits before that!!
Try not to let your fear of a crash spoil the good days. But we all DO know exactly what you mean!

21again - glad your DD is so much better.

Dwardle - done all your reports?? Have I? No, but I have got until Friday!! Hope your DD is well at the moment.

Nickschick/Katsh - how are you both???

Oh goodness - have just spoken to LP trainer and we may be on for next week!!!!!!!!
I have pushed to sit in - not least cos I am very nosy, but the trainer sounded SO nice. I actually feel really emotional about this.
Reports - Have nearly finished! Just got to point when I had to get them done! Keep writing, OM!
Am in shock.

Dwardle - just go for it! What have you or your DD got to lose? Just remember: 'Why should she not be in the 85 per cent success group?'
What do you mean by 'pushed to sit in'? Is your DD not keen or trainer not keen??? I think it's VITAL you sit in as then you know what has been said/done....Just remember, against all teacher training DON'T JOIN IN! You are merely observing....!!!!!!
Are you going to be able to spare 3 days? You really need to be there in pm as well as trainer will set challenges for your DD. Just have to take 3 days unpaid leave....
Keep posting,,

I am fine about the 3 days - one of the joys of my job is that I can do it - my chair of govs will be fine.I will just not be in school. My deputy can cope and I can pick my emails up in evening. Time to put dd 100% first.
The trainer has not done teenagers before so I think she was a bit tentative - but she was fine about me being there once we had talked about it - and I will just sit there, promise. My dd thinks this is hilarious! She wants me there. There is a 17 yr old on same course so that will be good, I think. She - the trainer- sounded so nice and we talked for ages after she has talked to dd.
Am feeling v excited - just hope she accepts dd after reading her questionnaire - but think she will. Thanks for all the positive support - really needed it.

That all sounds great! I really think she will accept your DD and if not - then she's not ready, yet! I'm sure she is though. Are you starting on Monday? Read my post from when I did it with DD. I found it exhausting!! It is very intensive but there's so much riding on it for the DC that somehow they just manage.
Good luck and huge hugs!! I'm really excited too!!

Hello - I'm still here, reading but not posting. I just haven't had time. We didn't go away but have stayed at home and coped with building work as I was too tired to make the journey to my in laws a few hours drive away. I am finding it v. hard going, but I'm trying to take a day at a time. I still haven't read the thread - every evening I plan to do it but there are so many things that have to get done each night! I'm sure you all know that feeling. My dd1 (9) and ds (1) are pretty full on too, so there isn't much time for getting my head together over this. Tomorrow it's dd2's induction day at her junior school for September so I've been in touch with the head and I'm hoping to bring her in for the assembley and to meet her teacher and class . They have lots of fun stuff planned for the day, but I think if we manage the 1st hour she'll be doing well. Head seemed supportive, so we'll see how we do. I am going to stay at school while she is there so that she can come out at any time. I feel it's a massive hurdle to get over, so I am really praying ( yes I'm a Christian too ) that she will wake up with enough energy to at least manage a short time. She declared tonight " I will be going to school tomorrow Mummy" so I hope that's the case.
I'm sorry about the awful response from your DD's school positive. Dwardle, I now need to read the thread to find out about LP !
Even when I don't manage to post or read I am comforted by the fact you are all here. I will try to get the thread read in the next week and then I'm sure I'll have lots of questions for you.

Oh, so glad I logged in!!! Dwardle this is so exciting and you know you have Optimistic backing you all the way (and of course all of us). We are going away on Saturday to Portugal and I am going to miss what happens, although I may be able to log in somehow. Tell your DD we are all thinking of her and just know she will do well .

DWardle, Oooooohhhh!!!! How exciting. I will be thinking of you and waiting for the updates! Really looking forward to hearing how it all goes. I will be thinking of you both and wishing you well.

Katsh, good to have you posting again. I hope school goes well today and the school are understanding. Will be thinking of you and your dd. How long are the builders in for?

Sending love to everyone and hope you all have a good day.

Really hoping things go well for you Dwardle.

\o hello everyone else - using the pc at the library cos ours is dead so sorry if i miss any important news.
Sam is not very well at the moment at all I dont know if its over exertion/heat or what but hes very very low.

I aim to be back online soon so will catch up then \o/.

Everything is so busy at the moment but checking in to see how everyone is doing.

Dwardle - still excited for you and really hope your DD can do the LP. She has come a long way and it was so good to hear about her party last week. Maybe now is the time to grab this opportunity and she can get better just as Optimistic's DD did. Our practitioner has given us the details of other teenagers who have sucessfully come through the process so that we can talk to them, can you do the same if you feel the need to?

Positive is your DD still feeling good? I think I can remember feeling a little bit the same as you describe, almost holding my breath and waiting for the next crash. I think that as she improves you will gradually relax and so will she. Heard anything about schooling yet?

Hi Optimistic hope you are nearly at the end of those reports, just think of the lovely long Summer holiday coming up. Are you planning anything this year? I have seen very little of DD1 since GCSEs finished, it seems to be one sleepover after another, but it is so good to see her relaxing after all that hard work.

Katsh - hope you are coping with the builders or have they finished now? How are things?

Nickschick haven't heard from you for a long time and Choc where are you?

Nickschick - crossed posts. So sorry to hear Sam is not good. Maybe he is fighting this too much and needs to try to rest more (easier said than done - I know). Keep reading and following Dwardle's DD's progress and also will let you know what our LP practitioner says after we speak to him. Have you explored this route for Sam - especially as he has been bad for so long?

We arent convinced at the moment l.p is for Sam hes finding it so hard to accept he has a 'condition' and ignoring all the signs until its just too late.

If I can get him to accept his condition and work towards helping him understand his body and its limitations then I can see LP would be a possibility but as it is he is in complete denial.

Im hoping for a restful summer holiday where he can recoup and remember how feeling 'well' feels iyswim?.

I will be so interested in anyones experiences and i have fingers crossed for you all xx

We arent convinced at the moment l.p is for Sam hes finding it so hard to accept he has a 'condition' and ignoring all the signs until its just too late.

If I can get him to accept his condition and work towards helping him understand his body and its limitations then I can see LP would be a possibility but as it is he is in complete denial.

Im hoping for a restful summer holiday where he can recoup and remember how feeling 'well' feels iyswim?.

I will be so interested in anyones experiences and i have fingers crossed for you all xx

We arent convinced at the moment l.p is for Sam hes finding it so hard to accept he has a 'condition' and ignoring all the signs until its just too late.

If I can get him to accept his condition and work towards helping him understand his body and its limitations then I can see LP would be a possibility but as it is he is in complete denial.

Im hoping for a restful summer holiday where he can recoup and remember how feeling 'well' feels iyswim?.

I will be so interested in anyones experiences and i have fingers crossed for you all xx

We arent convinced at the moment l.p is for Sam hes finding it so hard to accept he has a 'condition' and ignoring all the signs until its just too late.

If I can get him to accept his condition and work towards helping him understand his body and its limitations then I can see LP would be a possibility but as it is he is in complete denial.

Im hoping for a restful summer holiday where he can recoup and remember how feeling 'well' feels iyswim?.

I will be so interested in anyones experiences and i have fingers crossed for you all xx

We arent convinced at the moment l.p is for Sam hes finding it so hard to accept he has a 'condition' and ignoring all the signs until its just too late.

If I can get him to accept his condition and work towards helping him understand his body and its limitations then I can see LP would be a possibility but as it is he is in complete denial.

Im hoping for a restful summer holiday where he can recoup and remember how feeling 'well' feels iyswim?.

I will be so interested in anyones experiences and i have fingers crossed for you all xx

bloody library computers .....sorry

hi Nickschick, good to hear from you again. Looks like the library computer is fun!!!!

Sorry Sam is not good. I know exactly what you mean about not accepting the illness. DD is the same here. She never has accepted it. She has never told any friends what is wrong with her, which has made things awkward. She is improving now, but I still feel she has not accepted what has happened. It just took months of her doing absolutely nothing. I am sure things could have been easier for her if she had slowed down sooner, rather than her body just giving up for months to get her to stop! But good luck on convincing Sam. Our paed has said that DD was more affected than she should have been because of her lack of acceptance, but also, she assured us that she would recover well because of this attitude, too, so look at the positive. If he won't accept he is ill, he will be determined to be well as soon as possible. So far DD has proved this theory!

21again - Letter complaining about the report is on the back burner at the moment as we have parents evening next Wednesday and we did not want to warn them that we are upset by it! Appointments booked and we will see what reaction we get when we ask questions about it. In the past we have ended up inadvertently warning them of concerns and that was when we get bizarre rules about what we were allowed to say to who. So element of surprise this time! We will send in stinking letter if they are not totallly sympathetic next week. I am expecting them to be the same insensitive bunch as before, but we will see!!

Love to you all. DD had enjoyed a couple of good days, but probably did too much yesterday. Not probably, definitely - she went to the cimema with DH as a belated birthday treat - her choice!. First time she had felt well enough to, and first time at cinema since November, but really paying for it today. My head is feeling as if it is going to explode too for some reason.- Need a thunderstorm!!

Afternoon all....

Just as your lot seem to be suffering so is DD - heat though!
She was really hot in school yesterday and got to bed at 11pm after doing a dance show in a stuffy theatre! Not our idea of fun at all, but it was so good to see her do 2 tap dances. I think she is just knackered today and needed a good old fashioned rest.

Nickschick - if it helps at all my DD really got cross with anyone who tried to pigeonhole her into the CFS/ME box! She has hated this with a passion. As far as LP is concerned there is absolutely no sitting around discussing symptoms and how poorly we all feel etc. It really is 'Right! Let's move on and get ourselves the life we love '. It may well suit Sam because of that but obviously he has to want to do it. There are a few vidos of teenagers, boys too, who were sceptical and thought 'what have I got to lose?' and were successful. Ask him maybe if he would do something that would allow him to be normally healthy again and give it a go. It's more about being openminded than admitting to CFS/ME. Apologies if I'm overstepping the mark...

21again - writer's block is over and I've got 2 days to get them done. We are going to Suffolk (as usual) for our hols. DD1 got a cricket tour to Barbados and a rugby tour to Australia in 2010 so....saving....!!

Hi all - it's been fairly hectic here. DD had her Chemistry GCSE. She crashed badly after the first paper but was OK after the 2nd. Last Friday we had the Perrin lady come round for her assessment and examination. To us it all makes a lot of sense and has a scientific explanation, which we need. I am really not knocking the success some of you have had with LP but we need facts big time. Anyway, she said all sorts of things may have contributing, including forceps delivery, plus the fact DD broke her left collar bone when she was 4 - the left side is where 3/4 of the lymphatic drainage system is. Wecould be in for a long haul, it is seen as good to feel worse before you start to get better as the toxins have to come out. Interestingly, nausea is something DD has never suffered from but that night she did and has on and off ever since. We are now doing daily treatments at home and the lady will be coming once a week.
Interesting what you said Positive about braces, I read that somewhere although I have no idea where - amalgam fillings are definitely meant to be bad. DD had a brace fitted 6 months before her illness started and we have had her lovely orthodontist visiting at home. It should be coming off before too long so it will be interesting to see if that improves anything. I would love to go to the thing in London on llth July (we arent too far away) but I am having a couple of days away on my own in Bournemouth during the following week, so dont think I can really skive off the previous Saturday too - another time hopefully. Looks like the heat is going to break at the end of the week, so enjoy it while it lasts!

Hi Everyone
Such a bad idea not to post regularly - now I want to respond to lots of posts and going dizzy trying to read them and write at same time!!
LP trainer has just phoned and is willing to do dd so we are on for next Tues
Will keep you all posted! Thank you all so much for your support and encouragement and good wishes.
Was thinking about being ready for this - dd is now but was not before - she seemed accepting and did NOT have fight. Now she is cross and wants to be better and at school and living her life. She is doing it with a teenage boy, nickschick, so will keep you posted. So sorry to hear Sam is low. Have you had any thoughts about CBT? accept it may be hard tho.
Good to hear from everyone posting - Katsh - how did school visit go? V interesting to hear about Perrin, Choc - good luck with it.
Posatt - gd luck with P Eve - good idea to be measured and keep things ready. Top tip I was given was choose your argument and your time! I know what you mean about finding bad days easier - hard isn't it!
V jealous about yr trip tp Portugal 21 again! Have a wonderful time.
Will keep you posted

Dwardle - good luck with the LP on Tues. I will be thinking of you all day... Post when you can.

Choc - great to hear from you. Glad that you've got going with Perrin. Hope it works for you. It seems to have success - have had a look on the website. I'm a big fan of doing what feels right as you know and there is more than one way of cooking an egg!!Let us know how it goes, lots of people will be v. interested.

21again - have a lovely trip to Portugal, lucky thing. Post before you go though...

DD much better now and raring to go again tomorrow. Part of the problem is that her school is pre - WW2 and incredibly hot in Summer!! After 30 yrs of fight they move in to their new building in October so I would hope it is air-conned!!

Hi all,

Choc, keep posting about perrin. I am intrigued.

Dwardle, are you doing the residential LP? Does that mean you are not going on the 11th? Hope you are still. If so, where are we meeting. I don't know anywhere, so just let me know and I will be there! I will be thinking of you on Tuesday and will look forward to hearing how things are going.

DD has first CBT on Monday. Not sure what to expect. Tried one lady in January, but really didn't work out. But this lady comes recommended and sounds really nice on phone.

You could have knocked me down with a feather yesterday when I received a letter from DD school's head, with not once, but twice the words "I apologise..."!!!!!! I have finally been sent a policy that I ahve been asking for since December, the school admitted to not having it and said they would sort it asap. Since then I have asked but been ignored, so emailed Chairman of Governors on Wednesday. Instant result!!

Love to you all. Busy weekend with DD1 returned for weekend after being away for 7 months. DD2 travelling to Durban on Tuesday, DS arriving home from school trip to France today - I've had 2 phone calls from him, crying both times saying that he wants to come home! DD4 is off on school trip Tuesday, too. First time she has been away from us! Meanwhile DD3 has had a bad few days and I think that all the activity of everyone around her has highlighted her inactivity, which she is finding hard to take. I feel emotionally wrung out, so she must be too!

Have a good weekend, whatever you are doing and I hope dc's manage what they want to do.