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Chronic Fatigue in teenage daughter. Experience anyone?

970 replies

twentyoneagain · 01/10/2008 09:57

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!

OP posts:
Are your children’s vaccines up to date?
twentyoneagain · 08/07/2009 10:09

Boast?!!!! Boost.

OP posts:
twentyoneagain · 08/07/2009 10:11

Hi Positive, instant chatting here, anyway 1 minute left, thinking of you all.

OP posts:
chocaholic73 · 08/07/2009 14:37

Hi all, lots seems to be happening for everyone. Perrins is hard I have to say. The Perrin lady made it perfectly clear at the start that she would prolly get worse and that they view that as a good sign. However, as a parent it is hard to take. It seems to be "worse" in a slightly different way to the ordinary ME way, if that makes sense. On monday morning she wasnt bad at all. Perrins lady came and gave her a session, including quite a lot around her sinuses and she felt it a lot afterwards. By the evening, her legs hurt a lot too whereas they had been fine earlier in the day. She is still not good. We have a daily exercise regime to follow, plus she has a mini one to do, plus we have to do hot and cold compresses 3 times a day .. all good fun. There are also yukky supplements to take, not helped by the fact that she cant swallow pills, so I am having to squeeze the fish oil out of the capsule and it goes everywhere so I am going round smelling like I work in the fishmongers atm! In some ways, I wish she had been prepared to go for the lightening process but she just is not and, at almost 18, I feel it is important she makes the decisions wherever possible, she has so little control over the rest of her life. Sorry this has turned out so long ...have a great time in the sun twenty one and enjoy London on Saturday those of you who are going.

positiveattitudeonly · 08/07/2009 15:49

Sorry to hear that you are struggling with perrins and the smell of fish!!! Were you told how long it would take before the improvement starts? Please keep posting about it, the good and bad, as I am really interested to know how all DC's go with the different processes.
Sending cyberhugs to you (and DD) and I will look forward to hearing some more positive news soon, I hope.

optimisticmumma · 08/07/2009 16:30

Choc - take heart. You are absolutely right in that your DD must do what she feels comfy with. Will be thinking of you. I'm sure if you keep at it you will see improvements.

21again - have a great time, you lucky thing1

dwardle - hope second day is good.

Positive - see you on Sat!!!

Nickschick and Katsh - post when you can

Hugs to all on the thread!

dwardle · 08/07/2009 22:57

Very brief messge - LP is miuch saner than I anticipated and much more practical. It all makes sense but not sure I can put into words yet. Also, need to see dd use it on a school day!
Choc - hang on in there. Send hugs
Nickschick - dd has done LP with a boy. Interesting!

positiveattitudeonly · 09/07/2009 09:05

Warning Long Post!!!!!

Just thought I would let you all know how parents evening went last night. I had highlighted with florescent pink all the insensitive comments on DDs report. I deliberately had prepared dinner and had taken time out to think calm thoughts beforehand. At last minute DH had emergency at work and could not get away ? deep breathes and reassure myself that I could cope alone! Just going out the door when DD3 started choking on her dinner (bad day after busy weekend) so dealt with that, removed all food and headed off with seconds to spare.

First 2 teachers were fine. Felt they were understanding and seemed more or less realistic-ish about expectations for next year.

Then stood all alone with loads of healthy, lively teenagers and parents around me waiting to see the next 2. I could feel myself getting more and more wound up as I seemed invisible (if you saw my size you would see that is very difficult!) while the other parents dived in to be seen ahead of me. Just as I was edging to the front of the scrum dis-organised queue out of the corner of my eye I see the head approaching and determined not to make eye contact I looked down only to hear a booming ?Mrs B?.? heart dropped to the floor, but I managed to not cringe too much as he stood towering over me discussing policies and the fact that he was very sorry that there had been a mix-up (no mix-up that I can see, but that?s another issue) in an incredibly loud ?assembly? voice while every other parent seemed to go very quiet, look in my direction and ears wagging like radars.
While this was going on the scrum moved forward, after the head sauntered off I was left once again at the back! Eventually (1 hour late, by now ) I managed to get to Sports Study teacher, shook her hand, introduced myself and before my bottom had landed on the seat she said ?How often is DD training now, and is she still swimming competitively at county level?? Jaw to floor, heart in mouth, head turned to mush, me looking like a demented goldfish I somehow eventually manage to squeak ?Did you know DD has ME?? Apparently, she did!!!!!!!
Anyway she then proceeded to give me a 10 minute lecture talk on the fact that in 1986 she had ME and was never believed by anyone. I had a run down of symptoms, treatments, Drs, colleagues and a useless husband (now ex- I heard all about why he is now ex??...) to the minutest detail. When she paused for breath I managed to wave a pink highlighted report at her and asked if she could understand why I might be upset with it. She took it from me, ripped it up said ?Don?t show DD, its rubbish?. Then went on to give me a further 5 minutes on how disappointed she was that DD would not get the top grade (any grade) that she was expecting, how life was so unfair, what a fantastic swimmer she had been with so much promise and expectations ahead of her, ending with a "don?t be upset, Oh no I have upset you now, don?t cry, oh no, oh please???" Brain turned off, demented goldfish gave up, rolled over and floated to the top of the tank!!!! I somehow extricated myself to the toilets where I locked myself in for 10 minutes. Deep breathing, cold water and shaking thoughts out of my head!

Back to the scrum for the maths teacher, but I cannot tell you a word she said, brain was in hibernation, shock or I was just too embarrassed and just wanted out!!! Ran out to the car (missed seeing SENCO, cos I had had enough) where I had to sit for 10 minutes pretending to be on the phone before I felt safe enough to get home.
Arrived home, only to remember that I had wanted to stop at shop for wine on the way home, so had to make do with a can of coke instead!!!!!
Round 2 this afternoon in meeting with LA and making plans for next year!!!! Don?t think of demented goldfishes. I will start deep breathing now in preparation!

dwardle · 09/07/2009 09:12

Have just read your post. I so think (teenage speak) that you and dd would benefit from LP. Will try to explain on Sat!
It sounds like noone at yr school has any emotional intelligence at all.
Have to go - will get back later. Big Hug

optimisticmumma · 09/07/2009 10:14

Positive - God How awful for you. It sounds like the re-run of my parents' eve back in Feb. If it makes you feel any better I had a horrible eve too. At my school show. In a theatre, numbered/lettered tickets. Simple. Went to sit with my family and found another familly there. When politely asked them to sit in the seats on their tickets he launched into a stream of personal abuse . I was so taken aback, it was humiliating and mortifying. In front of other parents and my own family.
So I am feeling as wrung out as you today. We will have a big, supportive chat on Saturday. Looking forward to it, Mrs B...

katsh · 09/07/2009 13:28

Hello. Positive I sat here reading your post feeling so much for you. How awful. What idiots. I hope that you are feeling better today. Just remember that none of it is a reflection on you - you have nothing to be embarassed about. It's all a terrible reflection on the school. I have to steel myself every time I go near dd2's school as they have the emotional intelligence of fish.
Opt - sorry you had a horrible night too.
Dwardle - LP sounds great. I hope that today has been a good day too.

Well I'm learning to notice the positives like you all suggested. So I'm here to record that dd2 made it to school this morning for 1 hour. I am not going to get down about the 3 other days this week we hoped to go and she couldn't . I am trying pacing - a less intense version than the one that some of you have done, but a manageable one for us. I'm finding it helpful, even if just for me to look back on at the end of the day and see what was too much for her. As she is so young I can't leave her ever, and so I've been going a bit mad stuck at home all the time. A v.kind friend had dd2 at her house for an hour yesterday, and I've discovered that we can't do that . Just being with someone else who talked with her for an hour completely floored her for the afternoon. So today when someone offered to have her so that I could take ds swimming I asked the friend to come here. Made all the difference - dd2 lay in her bed listening to a story CD and was then able to go to school later on. It's amazing the sense of achievement ( however short lived) that I'm getting from that !!!
I wish I could go on Saturday - both to meet you all and to hear the speakers. Unfortunately due to other committments we can't make it . I look forward to hearing about it next week.
Have a good day.

dwardle · 09/07/2009 14:10

Poor Pos att and OM - sounds like you both had awful experiences last night. Was really heartened to read about your progress, Katsh - because it is real progress - an hour at school is really well done and learning ways to cope is also much better.
Am so horrified about tales of schools - hope non of my parents think we are like that!Also, what are some peole like? What makes them tick - being obnoxious to others?
We are home and feeling very positive. DD says she feels better and happier.The next few days will be crucial as dd puts the learning into practice - but I am so confident she can do it. The boy that was also there has put away his wheelchair and was playing basketball last night

I will need to be very careful not to just go on about it - LP - all the time so tell me to stop if I am. I know Optmumma has been very good about that. What was interesting was that there were lots of times during training where things resonated with stuff I have learned about working with children, leading teams and how the brain works so it was not a whole new language, and it made sense. To be honest, I don't think the book does it justice really! Also, now see why dd would feel better in holidays and why exam period was so much worse!
Hope everyone is having a better day today than it sounds like you have all had recently - except 21again, of course!!!

optimisticmumma · 09/07/2009 15:57

Dwardle - you have no idea how much lip biting I have done on her trying not to be completely evangelistic about the LP. I completely agree with you about it resonating with other stuff we have learned recently in teaching about the brain. I'm so pleased and relieved for you both. Now you have to remember to let DD get on with it and not pester her with questions!!! Have you changed her room round yet. That was the absolute best thing we did. Nothing in my DDs room is as it was before LP. It was such a help to me as I had a physical reminder every morning that ' Hey! My DD is well' or rather not 'doing ME' anymore!!!!
Just so you know, my DD went straight in to school the next day (she wanted to), full time and has only had about 8 days off since March 5th (and that's largely due to hayfever!). Is your DD going to go in? In a way it's perfect timing with only a week to the hols. My DD did 2 weeks before Easter. It gave her so much confidence for the Summer term. I would think about that as I'm sure you have already.

Katsh - you have made so much progress. You have a different set of difficulties to us oldies with teenagers but of course it is so worrying with a little one! I hope you are feeling more confident about DDs schooling. She really will be fine you know, and I'm sure you can do bits with her over the long hol. You may find she picks up substantially over the hol and that it all goes wrong again in Sept. Just an observation in that, that is what happened to all of ours. I know exactly what you mean about being stuck in. I found myself getting v. resentful and then felling v. guilty. Have a great weekend and keep looking for those positives.

I am feeling much better - thanks for all your support. Have now put said dad in the a*hole catergory where he can firmly stay and as my lovely 12y o DS said 'He was the one that looked stupid Mummy!' Bless him!

optimisticmumma · 09/07/2009 16:01

Just re-read my post. Please excuse terrible spelling!Teacher? Me? No!

optimisticmumma · 09/07/2009 17:28

Argggh!! DD has just come home and gaily told me that 2 Y7s have got suspected swine flu at her school! Please someone tell me to stop panicking!

positiveattitudeonly · 09/07/2009 19:29

Firstly, SO pleased for you and your DD with the success! Hope the positiveness carries on and on and on!

OM - Your DD must be so much stronger now to cope with anything. What is the likelihood of her getting it? Does she know these people? Has she had anything to do with them? Probably not much help, sorry, but hope DD is ok.

OK officially crap day number 2 today!! DD gave me instructions on what she definitely did not want before I went to meeting, and I ended up sort of agreeing to something she really does not want. She was not well enough to come. I now feel like the original wet fish, who has failed daughter by not standing up for her! GRrrrrr!!! Not helped by DD telling me exactly what she thought of my pathetic efforts to get the best for her. (used up way too much red energy!!) I want to curl up and cry! Can of coke is really not going to sort me out tonight!!!!

On a more positive note, can someone help me: did someone on here say that their DC thought of themselves as well soon as they started their recovery? Did you then go on to do LP? I am really sorry, but I do not have the patience today to scroll through all the posts and check out who, where, when ,what etc. DO you get me? Dwardle, you have really got me thinking about LP, but DD now thinks she is well and does not think she needs it. She is doing amazingly, which is brill, but I am more realistic I think. She says she will just keep improving and she will be totally normal by September!!

Off to hide in a corner, had enough of today!!

optimisticmumma · 09/07/2009 20:23

Positive - I said that DD felt well as soon as she was booked on to LP. I think that if DD thinks she is well then she prob is but why not put it to her that LP will give her the added tools to help her when things may get tough next year. I agree with Dwardle in that it's so worth doing. I also do reiterate that you have to come to it in your own time....
Have calmed down re swine flu as no further info atm.

Hope you have a happier day tomorrow, Positive.

dwardle · 09/07/2009 22:27

Can we talk about this on Sat? Am too dead to talk now! Lots to respond to you, Pos att but am too tired!
OM
Please do not worry about swine flu. Is

  1. not v severe for most people
  2. not much you can do
3.She has been better for so long that her immune system will be stronger.

Have you tried the Phil Parker hayfever treatment? There is a podcast on itunes that you can download. Our trainer mentioned it!

Take carexx

positiveattitudeonly · 09/07/2009 22:43

Sleep well.
See you Sat. x

optimisticmumma · 10/07/2009 08:48

Morning all!

Dwardle - hope you slept well and that you can have a reasonably sensible day back at school. Ha! ha!

Positive - hope DD keeps feeling so well. That is such good news. TBH you don't have to be realistic about a crash it may not happen.

My lovely step-bro rang from NZ last night and he is thinking of doing the LP there! He has had ME for a v. long time but I thought he was recovered. Evidently, he still has bouts of illness and is v. positive about the LP. We talked for 25 mins!!!

Am really looking forward to meeting you both tomorrow but a bit nervous about saying 'Are you Dwardle! Are you Positive?' in case I get the wrong people and they think I am totally mad!!!!So... books in left hand ...

positiveattitudeonly · 10/07/2009 18:00

Hi all,

Dwardle, you didn't have to go to work today did you after the exciting week you have had???? Your brain must be whirling, well mine would be anyway!!!

OM - I am sure you are giving your step-bro all the encouragement he needs and I really hope he goes ahead. Another convert!!!

Right, book is ready, left hand poised. Just to add that I plan on wearing black trousers and green top, so you will know its me!! I have to leave at 5.30am, so no time to catch up on here if everyone decided not to come!

Really looking forward to the conference, but I hope it is a positive one and not just a grumble about how awful it all is. I am sure it wont be. I am hoping to come out really gened up and buzzing with enthusiasm and with tips on doing the best we can.

I want to thank you all on here for being all so supportive and encouraging. I am so grateful that I was told about this thread.

Hi Nickschick, how are things with you?

I'm pleased you DD has managed a little school, Katsh, hope you are managing to get a bit of time to yourself. Well done for working out about getting others to come to you, and just be there, not talk. It is difficult to explain to others how much it takes out of them, just having people around and everyone means well.

21 - Hope you are have a fantastic time and come back all refreshed and feeling good. Has your DD gone with you? How has she been with the flight and everything?

Hi Choc, I hope the horrible smell has gone and that you are beginning to see some results.

I am babysitting my friends very wild 5 year old tonight!!!! HELP!!!! Beginning to question the level of sanity that let me offer to do this, but it can't be that bad can it???? Only 3 hours!

dwardle · 10/07/2009 18:46

Yes - had a wild day!
Off out on staff do tonight so I may be weary tomorrow! 10.45 on floor 5, place to eat, book in left hand!
Not entirely sure what I am wearing!
See you then

optimisticmumma · 11/07/2009 15:59

Dwardle - hope you had a lovely shop, DD wasn't too tired and you didn't break the bank!

Positive - how was the conference? Hope it was useful and worth coming all that way for!

It was SOOOO nice to meet you both!

Nickschick/Katsh/21again - how are you all? Hope you're having a good weekend with your DC. Post soon....

twentyoneagain · 12/07/2009 11:08

Hey everyone - what's been happening? I need to know!! I take it the meet up in London was good but how was Dwardle's DD and how did LP go? I shall get back on tomorrow, please post all the news.

Positive so sorry things went badly at school. How was the conference?

DDs are with us and DD2 is suntanned, lively and energetic, has been banana boat riding and parasailing, swimming and doing everything any one could wish for!! She looks very fit and well.

Choc perrins is all quite foreign to me I need to read some more on this.

Bye for now.

OP posts:
optimisticmumma · 12/07/2009 14:05

Hi 21again - lovely to hear from you! Glad you're having such a lovely time. Yes, the meet up was great if a little weird at first. Surprisingly, we kind of recognised each other.... I'll let Dwardle tell you about her DD but suffice to say it all went well.So glad your DD is so well.

Positive - I need to know if you got home OK!!! Was the conference good or did you skive and go shopping!!!

Dwardle - please post and let me know how DD is today!

dwardle · 12/07/2009 16:44

Hi everyone
It was great to meet up in London - weird yes but great. I really want to know how posatt got on at the conference - was it any good? Hope OM had a good rest of day.
DD and I walked til we dropped and shopped and shopped! We had a really great time and dd was excellent all day - all she moaned about was an aching bag carrying arm!She bounced out of bed this am (late but who cares) and we have just been to see the baby again - he is SO cute
I am still scared to be so positive but it is just wonderful. DD is normal and fine - sounds just like 21's dd without the week in Portugal!
It is really hard to explain LP, 21 again but it is just sensible and logical and builds up a strategy for dd to use. Yesterday, she was flagging a bit, so she did the process and was fine again. She is so different. She went to school on friday and is talking about how she is going to catch up on key bits of school work, but using different language that is not tentative and surrounded by ifs and maybes - it is all I am...
I feel she has got her life back and I cannot quite believe it.I am having to learn to step back and not keep asking her how she is - this is very very important - she does not do cfs now!
Pos att - was thinking about the study centre thing. Isn't the fact that they have no other students a bit irrelevant? That is their problem not yours? Really hope you had a good day - was so good to meet and can't wait to hear from you.
Hi to everyone else - hope you are all okay and your dds are ok too