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!

Don't know if DD had a coeliac test, she had all the blood tests deemed necessary as dwardle says but not sure what they all were!!

From what I know coeliac is a lifelong condition and is only controlled with a gluten free diet. I suppose it makes sense that if your DD was a coeliac then LP would not have made her better.

I can understsand wanting to keep the appointment for a while though, so does that mean your DD would have to have the test done?

Hiya - I think sam was tested for coeliac i shall enquire next time we are at the hospital.

Opmumma would it be wrong to say im pleased your dd is doing so well with her coldykwim lol.....

nickschick - just wanted to say that I'm glad you finally have some support at school. About time.

I spoke far too soon

after a really good week- on weds Sam went to play football after school-yayy thought I 'normality'......he came home riding his bike with a sore wrist.

I bandaged it gave him paracetamol and sent him off to school.....

arriving at school he swung his bag over his shoulder and felt his wrist go 'funny' reports it to the nurse who tells him my bandage is too tight (it isnt it will transpire in a min what happens...) redresses it and tells him she will fone me.

I get no call.

Sam goes back 2 times more and believing she has foned me he doesnt press the case just carries on as best he can (with no pain relief).

On collecting him we realise there is a problem straight off toi casualty where they xray him and keep him there for ages eventually we are told he needs to see the specialist tomorrow so we have to go back .....long story cut short - its blooming fractured!!! the bandage i put on was supporting the wrist as he swung the bag it dislodges and swells .....

I fone school this morning to say why sams not in and to say im not happy how things went yesterday senior staff v supportive and promises to investigate .......the first aider rings me is really rude and quite aggressive and hostile and ends up putting the fone down on me!!!!

I fone back complain and after 'investigtion' get a forml apology from the school.

I understand mistakes happen,i understand sam cant be the be all end all in school but i find it quite negligent that after our meeting the other week that still things are being ignored.....now my fear is that when Sam is ill his pain is intensified had sam not been having a 'good' week he could well have collapsed in school and that would have been mortifying for him .

By the way despite 3 emergency contacts 2 mobile numbers and a home fone she said shes foned me once but not getting an answer she didnt ring again when i questioned that she put the fone down on me!!!!

She didnt fone me i was home all day!

Thanks all. Am pretty sure DD has been tested for coeliac but like 21again she's had so many I can't be sure! I jst thought it was interesting that GOSH request that. Presumably they have a number of chn sho present with CFS but are in fact coeliac!

Nickschick - what a nightmare! Take a deep breath and enjoy the weekend. You'll know what to do having slept on it for a few days!
Sounds like the right hand doesn't know what the left hand is doing.

21again/dwardle - thanks for your thoughts. DH on a golf jolly (lucky him!) so I needed to have a bit of imput.

Oh Nickschick that really was awful for you and for Sam, especially as he was obviously doing so well and playing football!! Sounds like the first-aider was being defensive as was obviously in the wrong. The only comfort I can offer is that one of DD's friends broke her wrist earlier this year and it has mended pretty quickly, so hopefully Sam will soon be better.

Hi to everyone else. DD is still good and hopefully will increase to five short days after Easter. OM hope DH has a good golf trip. When do you get your break away?!!!

Is there any other way of taking fish oil apart from capsules? DD has a total aversion to pills (and school, but that is a whole other story.) Feel fed up tonight - when will this ever end? DD had great weekend and looks like death warmed up today, so once again no school.
Nickschick - how is Sam's arm? What a terrible experience. Am sure the first aider will be feeling very guilty but that is no consolation. Has he been in school since? Is he getting much pain? He should walk past first aider daily with pained look on face just to hammer point home!! (Only joking)
Seriously though, do you think that there are issues about some staff thinking that cfs sufferers are just being hypochondriacs? Have you given school any leaflets?
My dd broke arm whilst on family walk with dh and me - she was 2ft away and sat down with hands out, overbalancing on roller blades!
Double fed up - ds has been asked to go to county trials and we are on holiday! He is philosophical and says he can try next year-what a sweetie.Sometimes hard for other children when all this is on

Hiya ....sam was back at hospital today and hes broken it and its in a full cst when i ang school you could hear the receptionist say 'it *is8 broken then? and undertones of 'oh shit' lol.....

Im not quite sure whether she did think sam was being ott or what but the lea woman who rang me on friday to be tolod the situation seemed quite peturbed so i imgine that they will be more on top in future.

It is paining him wether its worsened by cfs or tiredness or being a teen i dont know but hes a cross old bear.

opmumma- u were right the weekends passed and i just think let it go - the wrist is broken you cant go back .....

21again thanks for being there for me

dwardle- yes i quite agree its not just the sufferer cfs affects .....your ds is a star !!

fingers crossed for a good week for us all.

Nickschick - When my dd did hers, had to dose her with lots of pain killers for a few days then it eased and she was not even teen then
Hope the week gets better for youx

Dwardle - you can buy fish oil in liquid form but it may not be the strength of the mind1st brand. So sorry your DD not so good yesterday but it is good that the panic attacks have lessened,that has to be a big leap forward for her. Keep encouraging her and being positive - she is doing so well - and I hope she is still sleeping well. You must be feeling frustrated for your DS missing his trials, but he sounds like a lovely boy, and I hope the holiday that you have planned will be refreshing for all of you.

Nickschick - sometimes you just wonder what is going to be thrown at you next - as if you didn't have enough to deal with. Hopefully this will mend quickly, children's bones seem to heal well and at least you have the Easter hols coming up. It will be a good chance for Sam to rest up and recouperate. Try to take care of yourself in all of this, it is natural to put everone else's needs first but it's important for you to stay strong and positive (you certainly do sound it)

I hope you all have a good day and hope your DD is fully recovered Optimistic.

Just popped in quickly to say 'hi'. DD is better, thanks 21again.
Not much to add to 21again's post but to say I'm here for you all and keep positive. Your DS sounds great, Dwardle. What a shame for him but a holiday sounds fab and he's bound to go next year to trials. How old is he?
Nickschick - sounds like you can sit back and watch while school beat themselves with large branches!!!!!
Have a lovely break everyone. Enjoy your DC with no school pressure and post when you can!,,.

So glad to hear DD is better Optimistic. It sounds as though you can really relax now as she has shown that she can shrug off a nasty virus just like a "normal person". Am happy for you all and you and your family need to relax and enjoy the break (apart from GCSE studies - same in this household).

Dwardle and Nickschick hope everything is OK and things are improving for you and DCs.
Keep in touch.

Hi there everything seems to be on an even keel or improving for all of us doesnt it?

Sam has been to school 4 full days this week and his wrist is feeling much better.

Fingers crossed for a restfull Easter.

There must be something in the air - my dd made it into school 2 out of 3 days and has just gone off on her bike for some reason. Her consultant has counselled her to pace herself but she is a different person!
Next step is increased exercise - looks like i am shelling out for gym but am trying to negotiate trial period.
Glad to hear everything is okay with you all - esp Sam's arm, but also your dds OM and 21again. Please keep in touch and lets all enjoy our holidays!

Dwardle and Nickschick - I can't tell you how pleased I am to read your posts. Have a good break everyone and keep posting, it will be good to hear what is happening, especially if we are all posting positive experiences

Big hugs all round to everyone!Have restful and enjoyable holidays!Enjoy your DC. Keep posting...

Hi to everyone - just to update, DD still well and enjoying the Easter break. She has been swimming today with friends and is fine.

Hope all the DCs are well.

Hi everyone
DD still going on okay! Looks tired this pm so took herself off for bath and early night unprompted!
Keep smiling everyone - nickschick, how is Sam?

That is good news Dwardle - hope DD is still doing well, she seems to have improved so much recently and that helps you to relax a bit more.

Hope everyone is ok and DCs are fine. How is Sam's wrist now Nickschick? The rest over Easter will be good for him, if you can persuade him to slow down

That is good news Dwardle - hope DD is still doing well, she seems to have improved so much recently and that helps you to relax a bit more.

Hope everyone is ok and DCs are fine. How is Sam's wrist now Nickschick? The rest over Easter will be good for him, if you can persuade him to slow down

Sam hasnt been so good tbh...he is finding it very hard to accept he cant do stuff and is different to his mates - after a trip around town with some friends at the weekend he became exhausted and achey - bcos hes refusing to think about what he can physically do he is wearing himself out physically amd mentally tht coupled with teenage angst is leading to moods and teariness which inevitably ends in him feeling worse .

Thanks all for asking but im a miserable cow lately.

Hope you lot are all well and your dcs are ok.

Sam is a fighter, there is no doubt about that, and in many ways that is a good thing. Because of that I can see that he is not going to accept trying to rest and pace himself. Pacing is the way we are advised to tackle cfs by doctors etc but it is so difficult to persuade our DCs to do it especially on good days when they feel they can do more.

I know that Optimistic has recommended lightning and have you looked into it at all? It certainly gives quick results if the patient can agree with their methods, but it involves changing the way we think about certain things. You could talk to a local practitioner and at least get their perspective on this.

I can understand how miserable you are feeling, I know I would be the same and you have had this problem for a long time now. CBT certainly helped our DD, so would Sam possibly consider that now.

Keep in touch and I hope things improve soon.

Hope everyone had a great holiday!
How are all the DCs?.
To update you all my DD was 14 on Sunday and had a lovely day with friends.
Since LP she has been to school fulltime for 24 of 26 days, has had 7 riding lessons, has been to her first sleepover for two years and has definitely got her life back!!!
I went to the GP yesterday to tell him what we had done... he hasn't always been supportive and I wanted to wait to see how it went...anyway...he agreed to look into LP and get the trainer along to do a presentation to the practice. I also saw, by chance one of the other people on the course who has also had amazing results.
If any of you are still having big problems and are stuck please, please look into it. I can completely vouch for it and as a family we haven't looked back. Look after yourselves and post soon...

Hope everyone had a great holiday!
How are all the DCs?.
To update you all my DD was 14 on Sunday and had a lovely day with friends.
Since LP she has been to school fulltime for 24 of 26 days, has had 7 riding lessons, has been to her first sleepover for two years and has definitely got her life back!!!
I went to the GP yesterday to tell him what we had done... he hasn't always been supportive and I wanted to wait to see how it went...anyway...he agreed to look into LP and get the trainer along to do a presentation to the practice. I also saw, by chance one of the other people on the course who has also had amazing results.
If any of you are still having big problems and are stuck please, please look into it. I can completely vouch for it and as a family we haven't looked back. Look after yourselves and post soon...

Optimistic - that is so great, I am really pleased to hear your DD is doing so well.

DD is making good progress now, she is up to five slightly shorter days at school and is doing sport. To be honest the only thing that may cause her problems is having to get up earlier. At the moment she copes really well but in order to start at the normal time she will have to get up probably an hour and a half earlier. There was a big difference in DD's attitude last week when on one morning only she had to get up at the earlier time. She didn't get to sleep terribly well the night before and was a different person to the one we had been seeing up to then. To be honest it didn't last and she was fine that day and has been since, but we have known for a while that she has a slight "phobia" about sleep and feel that this is something we have to work on.

Obviously the best way will be to introduce extra hours slowly as with all pacing. Your thoughts would be welcomed.

Hi 21again. My thoughts are to follow your instincts. You have evidently found a way to get your DD better and so just keep going in the same vein. I would get her to do some sort of relaxation before bed and if she feels she can't sleep, not to panic but to try to visualise calmness etc etc so that she has every chance of then getting to sleep iyswim!Have you a relaxation CD? Calmforkids do one for teenagers that sends my lot off...
keep in touch

hi twentyoneagain.

i have only read some of this thread so sorry if repeating anything!

i was diagnosed with ME about 4 years ago (though the symptoms disappeared when I was pregnant).

I too had real trouble sleeping (from a teenager) and found the best things to help me were:

1. Being taught how to relax (loads of places can help; my GP put me in contact with a nurse but it's all about gping to each part of your body and checking it is relaxed/...you need to practice it a bit but I learnt the technique 15 years ago and have used it loads.

Also regular sleep and a pre-bed routine. No chocolate/tea etc after about 3pm;

and the one I hated the most but is possibly the most true..no lie ins. get up at regular time, even if didn't get till sleep until an hour before.

With the ME things that helped me hugely:

1. Changing diet (I have found out i have a HUGE wheat intolerance and since cutting it out am 5 months on nearly compeltely recovered)

also less sugar/caffine/

1. pacing

1. not sure about this for younger people but after a personal battle (me not wanting to) I eventually took anti-deprassants at a low level andn it nreally helped.

got to go but if think of more will return

good luck to all of your DCs makes me very at the thought