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!

Hello - I am still around and have been reading all the posts. Sorry I have not written much - I will try. This is all new to me.Thanks for your welcomes. I was feeling a bit stressed as my DD was quite reasonable over half term - managed a few things and seemed brighter. So of course on Mon am she looked like death and no school. Back track - she is 15 and started being unwell in Oct. in the great scheme of things she is not too bad but has not really been at school since Nov half term. Symptoms inc lethargy, headaches, aching and stomach ache, dizzyness and PANIC - major problem. We have been quite fortunate with v good GP who referred v fast to Paed who by total luck happened to run chronic fatigue clinic!She is also seeing CAMHS therapist who is doing CBT and other things to help with panic and sleep. DD seems happy with him and he is helpful. School are also great and supportive .... but it is still awful isn't it? I am so heartened by reading your experiences and feeling that I am not so bad when we have had a row, or worrying about her education - it is all normal.At the moment, we are not pushing DD to do anything re school but if she feels up to it she goes in for a bit. as she was almost incapable of going in without major panic attack, this is to help her to feel in control. Therapist explained how brain shuts down in panic ( total idiot me forgot and I am a teacher!!!)So as she is panicking less she seems a bit better. Also, our consultant made two points that made me think. He said 'this is a real illness with real symptoms' and I thought - if she tells me she feels ill, I must accept it. He also said that families who look at their child holistically tend to come through - which made me stop stressing so much about school. This is also v hard as, like your DDs, mine is bright, busy and able. So - I am having to accept that she may have to do fewer gcses or redo the year - but I want her to feel that she will get through and that we will support and believe her.
Hope this all makes sense. Have not tried any other therapies yet except a facial as the people we are talking to seem to help but am very interested in what you are saying.

Optimistic I am so sorry your DD is not too good at the moment. I totally understand the frustration you are feeling as I have felt exactly the same way. There have been days when I have just thought "come on pull yourself together and get on with it", if only.....

If your DD is doing LP next week then you should be posting some positive things by then. It seems to have come round really quickly and I am sure you are feeling excited at the prospect but also very nervous. It is a huge step but I am sure it is the right one and I will be thinking of you throughout.

Dwardle - it is good to hear from you and hopefully we can support and help each other through these difficult times. Are you trying pacing with your DD? That seems to be the accepted way to treat CFS. I think that what we have found is that every case is different and what works for one does not necessarily work for another. Nevertheless there is a lot of advice that will be helpful. When DD first became ill we were told that there was nothing to be done apart from rest and pacing. I now disagree with that - there are many other things to try - but the problem is finding the right one that suits. We have found CBT and homeopathy has helped enormously alongside the pacing, and just as I think that it wasn't one single factor that caused this illness, I don't think one single thing is curing our DD(my opinion).

Good luck and keep posting - you too Optimistic

DH has reminded me to tell you that the one thing we have found invaluable is a diary of symptoms etc. We started keeping one soon after DD fell ill and after a year we suddenly had the idea of comparing the diary with our own calandars and that of the school. A pattern that we had not seen previously suddenly became clear and was too much of a coincidence to ignore. It helped me also to feel I was at least trying to do something practical however small - the feeling of helplessness is very frustrating at times.

Hope everyone has a good day, DD is at home today (just three short days this week), and next week she wants to try four. This does seem quite a big jump but we don't want to lengthen any of the days she is currently doing, and the fourth day is going to include games which she obviously won't be doing. That actually makes it three and a half days and DD can have a lay down at school or just chill out somewhere (school have been very accomodating in this way).

Look forward to hearing from you both it is so good to talk to you.

Sounds like a better plan 21again. DD a bit better today and has done her 2 lessons. We are really excited about next week. Still haven't heard from school though and I want it to be authorised absence so that's why I'm stressing... Have just emailed them so hopefully we will hear.I'm totally convinced that DD has got 'stuck' and that she has the openmindedness and determination to succeed with LP, so I see no reason why we shouldn't be inthe 85 per cent success group. I will keep posting and let you know how we get on.
So good to hear from you Dwardle. I'm a teacher too and sometimes I think we are so immersed in school it is even more worrying. It sounds like you have had quite a bit of help quickly. According to our consultant it usually takes 18 months to get a diagnosis so well done you!! Is your DD in Y11? If so I do so feel for you BUT it is not the end of the world if your DD has to do less. She can catch up and as she is bright you know that she will. She will also learn invaluable life lessons along the way like how to cope with stress etc etc. All kids have to learn these things in the end. Keep posting....

Dwardle - I cannot recommend acupuncture enough for alleviating headache and nausea etc. Find a good chinese therapist and give it a go. My DD has done so well with it

Hi Dwardle and OM hope today goes well, how are your DDs?

DD is in school today later on which is why I can post at this time of day. DH takes DD1 in early and I get the later more relaxed journey. I don't need to tell you how good it felt to hear both DDs last night laughing and chatting together, but at the same time I feel I am holding my breath and waiting for it all to go horribly wrong again. I have to try to relax and just enjoy the present and try not to worry about what may or may not happen. A Mum that I know whose teenage son had CFS a few years ago says she still worries about him during the Winter months as that was when he was particularly bad, so perhaps it's not surprising I feel this way and I'm not just being pessimistic!

I feel excited for you Optimistic so I can't imagine how you must be feeling, which day does LP start? Are you able to accompany DD throughout the process? I think I would feel I needed to be there also in order to keep her on the right road afterwards!

Look forward to hearing from you both, keep posting.

Hi 21again.
I know exactly what you mean about breath-holding!! It just seems to go on and on doesn't it....
LP starts on Monday - 4 hours a day for 3 days. I am going with her but I also had to 'apply' (we both had to fill out 9 page forms). My DD had to want me to be there and was warned that although her parents loved her they may not necessarily be the best people to help her with the course.She still wanted me which was great as I would have felt a bit uneasy about it otherwise for the reason you mentioned.DD also had a 20 min chat with the practitioner to check it was what she wanted.
She came out of school after 3 lessons today looking so pleased and has asked if she can go to school on Weds afternoon straight after course to put it into practice! She also wants to take in a cake to share with the class to celebrate.All good positive stuff. we finally had a lovely letter from her head authorising her absence and wishing her luck with it.

I am so pleased for you Optimistic and I just know this is going to work for you, DD sounds as if she is just the right sort of candidate and is very positive. It is a huge step, but the more I think about it the more sure I am and if our DD doesn't get better we will definitely apply to do LP.

Have a great weekend and if you want to talk I will be checking in regularly .

Hi OM and 21 again,
good to hear from you both and thank you for the advice. Esp good luck with the LP process. Sounds really interesting. How long have your DDs been unwell for?
We have not been following pacing - not really sure what that is apart from a tiny bit i have read and what you have written. DD is having CBT and other stuff from CAMHS which she seems to find helpful. Some days she seems better than others and there is often but not always a link with school days - she was quite good over half term but woke up in a very bad way on the first day of this half term! Because she was having loads of panic problems at school, we have let her say whether she feels fit for school each day. Most days she does not but sometimes she goes in for a bit. CAMHS are supporting this approach and she seems calmer. Have not tried any other therapies yet - not sure who to go to locally and no-one I ask has used the local acupuncturists. This sounds really feeble I know!!!!!
DD is Y10
Did your DDs keep going to school throughout or have chunks of time off? It is easy for us to be flexible as school is only a 10 min walk from home so DD can go in at any time.
Do either of you work? I work full time and keep worrying that I am not doing enough for DD because I am not there - but I know when I am (hols, weekends) it doesn't seem to be that different. When she feels bad, she just does not want to do much and has always been a self contained kind of girl.

Thank you both for your comments - it feels so good to know am not on own. Hope the LP process goes well

Hi Dwardle - It's really good to hear from you.

My DD has had CFS for about 14 months now, it started with a flu-like virus Christmas 2007 and she never seemed to recover properly from it. She got particularly bad after Easter last year and missed a lot of school but after a good summer seemed a lot better. DD went back to school in September and seemed well until she caught a sore throat in October, and she became really bad in November and has missed large chunks of school until now when she is slowly getting back to doing things.

Pacing involves making a plan of rest and activity within the patient's limits and sticking to it. The activity must be what you can cope with - in some cases it will be just walking a few steps. This helps break the "boom and bust" cycle and if the patient can cope for two weeks then you can increase by 10% for the next two.

www.sleepydust.net has some good guidelines under "helpful tips", "pacing for energy levels", although we have not had to deal with the panic attacks and so I'm not sure exactly how to take them into account. It is a good idea to get some advice on this - our paed was very helpful and gave us some good information.

I am fortunate not to be working at the moment and therefore it helps with the odd school hours DD is doing as I have to drive her in.

Our homeopath was recommended to me by someone who had had very mild CFS and had found the remedies worked for her. We have also found CBT to be very helpful and, combined with the pacing timetable we have worked out, things are on a pretty even keel at the moment . One of the difficulties is to stop DD doing too much when she feels good but I think that now she is a lot more sensible than at first.

Optimistic - if you are around - good luck tomorrow, tell DD we are thinking of her here and know she is going to get better .

Keep posting everyone it is great to hear from you.

HI Dwardle/21again
Just looked at your posts. thank you both so much for your support. We are both looking forward to doing Lightning Process tomorrow. I will try to post tomorrow to let you know how it goes but it's great to have your support.
In answer to your post Dwardle, my DD has had CFS/ME for 2 years now. Tracking back we think it started with a virus that she never entirely recovered from. She started with headache, nausea fatigue and we thought she must be being bullied!!!!Of course when the symptoms carried on over weekends we realised this wasn't the case. Like 21again my DD was much better over the hols but I,m sure that was because she had control over her day and no pressure or tiring school. Again, she got really bad in Nov and has been down to about 20 per cent schooling since then.
As far as work is concerned - I had been teaching in a job-share for 2 days a week but I'm afaid that since January I have cut it down to 2 afternoons. I just couldn't handle the stress of going in with DD asleep/ill, even tho I have my Mum round the corner. Very luckily my job-share agreed to up her hours and I will go back properly in May, so our class has not been adversly affected.
I totally sympathise with you over work you are in a very difficult situation. If you can manage to compartmentalise then it's probably good for you to carry on and your DD is a year older than mine...
I think you have to investigate the panic attacks a bit more. Why does she think she is getting them? I'm sure the CBT will help. As far as CFS is concerned the idea is to try to even everything out so she does a regular amount each day. My only concern for a self-contained DD would be whether she was sinking into a depression as it's v. common with CSF. That has always been a big worry for us. I'm sorry if that freaks you out but it is something to watch for. Can I ask if you have someone to pop in and see her during the day? Sorry and apologies if this seems too intrusive I only want to help...

Post soon.....

Dwardle - following on from Optimistic's post above - we were advised by our consultant and therapist to give DD fish oil to combat any depression. He stressed that it should contain EPA and not DHA as many contain both. I had diffficulty getting them in the chemist and ordered from "Mind 1st" over the net - www.mind1st.co.uk. I am not suggesting your DD has depression, but it is another piece of information to arm yourself with .

On reading our two posts above it is quite striking to see the similarities between the two DDs, I wonder if you also see the same for your DD and can you trace this all back to a viral infection or some other trauma?

Optimistic the first thing I thought of this morning when I woke was you and DD. I will be thinking of you both all day and hope you get time to post soon.

Keep posting everyone..

Hi there everyone.

Sorry for barging in

Our ds2 is so poorly with this at the minute its the worst hes ever been - yesterday he ached so much he cried he lay in bed crying he couldnt move to get to the loo and his dad had to carry him (ds2 is a srapping 13 yr old) his muscles ached so much he couldnt even wee -we gave him paracetamol and a sugary drink and put him in our bed (the light hurt his eyes,the fan his ears and his blanket was too heavy) he perked a little yet went back to bed and this morning is the same.....

Oh Nickschick I am so sorry to hear your DS is so poorly, it breaks your heart to see them like this - I know I've been there. I do know that on really bad days DD would often seem to perk up somewhat towards the end of the day and I would get my hopes up that perhaps we were turning the corner, only to find she was worse again next morning.

The only thing we could do was wait for the symptoms to subside and gave her plenty of paracetamol as you are doing, but it's the feeling of helplessness that is so awful.

How long has this episode been going on and when did he get CFS? You need a good GP to help with this and see a paediatrician, but I know that most people also try alternative remedies. It is difficult to know what to try first as no two people seem to be exactly the same, and what works for one does not necessarily work for another. Do you have any ideas as to why DS is so bad at the moment?

If you look back on this thread you will see that many people recommend Dr Crawley in Bath, she is a paediatrician who specializes in CFS and will see children from outside her area. You may want to google her to find out more, I know Optimistic thinks highly of her.

Keeping a diary of symptoms helps and I can remember complaining to DH at one time that DD wasn't improving, however on checking the diary we could see that symptoms were slightly less severe and there were fewer of them. We used to number each on a scale of 1 - 10 according to the severity and it did help keep everything in perspective.

Please keep posting and we will be here for you, it does help to know that there are others who understand.

Ty .....Sams latest bout started on sunday yesterday hes been like this for at least 5 years what has really held us back was an initial diagnosis from a 'professor' of abdominal migraine ...we H.E for almost 3 years and then he went to secondary school -hes coping but has a awful lot of time off- I would say in all honesty that he has at least 2 days wheres hes totally 'out of charge' not neccesarily anything as bad s this but sometimes he can barely move and is confined to bed recently we were referred to a new paed who is quite supportive of M.E/cfs and the blood tests showed he had glandular fever at some point so we return later this month to discuss what happens next ,im keeping a diary but i just feel so bloody desperate ,selfish as it is I want to fix him and I cant.

We are hoping that the paed has some ideas for us but I think I know that we will have to go to Bath....

Thankyou so much for listening to me it makes such a difference to know its not just me and that you have this too.....as a mum sometimes i think 'is it this bad?' and then I think could it be 'in his head' but then i think no way can a child be as ill as this.

Hi all,
First - depression - yes am concerned about that but counsellor from CAMHS has picked up on it and it is an issue so no you are not intrusive - just spot on! Think that the CBT she is having may help but he has also referred to a colleague. Also exploring the panics - think we get it but again, just takes time.Will look into fish oil - again thanks.
Thanks for info about pacing - really helpful.
My DD is so like yours - she had a 1 month virus a year before and then ok over summer - then flared up again in Oct after an extra busy time and a cold. she is also SO much less bad during hols but there is no pressure.
Oh Nickschick, I send you a big hug - it must be awful. I too have felt so upset and stressed and worried is this in her head but have learned to accept that you would not make this up at all and my DD is not that bad - but the symptoms you describe are worse versions of some my DD has had. Also chatted to another Mum who had 2dds with ME/CFS and they are both happy and well now but had terrible times. She talked a lot about light and heat sensitivity and how thermostat seems to really stop working.Could you phone your paed's secretary for some emergency advice? Not that I am sure what else you can do really.Just keep him calm and give paracetamol. I use ibruprofen with dd as it is anti inflammatory and builds up if you keep taking it regularly. That is quite important with painkillers - they work better if you take them regularly, apparently.
Send big hugs to you all and hope the LP day 1 went well.

That thermostat thing - hes always got cold hands and head he always wears his socks gloves and a hat ,i thought it was a bit like a security thing but he is physically cold ...im going to the docs tomorrow with him just to be sure its nothing viral on top of this. thanks for your support.
(also took your advice about the ibuprofen)

Nickschick - There is nothing selfish about the way you are feeling, any parent wants to do the best they can for their child, and seeing them suffer in any way is just dreadful. This is not in their heads and as you rightly point out no child would want to feel like this. As I have mentioned before, CFS is not life threatening but it certainly is life destroying and not just for the sufferers but also for those around them.

How does DS cope when he is at school? Do you find that he has more good days than bad or the other way round, and does he try to do too much when he is feeling well? We have been told to pace DD and not let her do more than the agreed amount even when she feels good (that is very hard as she has wanted to be as normal as possible whenever she can),but she seems to be a bit more sensible nowadays.

It will be really interesting to hear how Optimistic's DD gets on with lightning. I really think that if our DD doesn't recover then we will go down this route, and I know of two people who have done this successfully - one of them was suffering particularly badly.

I hope your DS starts to feel better quickly and I will be checking in regularly so if you want to talk hopefully I will catch up with you.

Ty 21again - ds hates being poorly hes a dreadful patient and sees his illness as a weakness - he loves school and is very much one of the boys but finds it very debilitating that come saturday even on a good week hes shattered - day to day he manages and thats it really, he is worn out coming home from school and is either so 'on edge' he cant sleep despite being exhausted or is asleep for hours at a time,he has at least one day a week where he is just too exhausted for school this can range from a 'collapse' to being unable to get up ...- we are thinking that the physio will teach him ways to 'cope' but its very hard.

Im eagerly awaiting opmumas reports too and i have my fingers crossed its all good.

The thing about it affecting not just them but everyone around them is so true aside from his moods and understandable frustration i have had to continue being a sahm and we were thining this year i would return to pt work and having a poorly child doesnt negate the electric bill so its a bit of a stress really.

Nickschick how has the school been throughout? Are they being supportive and does your DS go in full time when he is able? We have DD on a reduced timetable and on days when she doesn't go in she catches up on a little bit of work, but we have learned that she mustn't feel under too much pressure. Do you find your DS is a lot better during holidays? Our DD coped with physical exercise well during the Summer but it was the extra pressure of school and another virus which seemed to floor her again.

DD is taking a good vitamin/mineral with probiotics to help her immune system (recommended by her homeopath) and she is also on homeopathic remedies one of which is to boost immunity as well. Just seen your post about cold hands etc and strangely my DD has icy cold feet when she is feeling bad.

We have accepted that year 9 has to be written off and our target is to hopefully get DD well for September, maybe with some home tutoring during the Summer if needed. I don't know if this is too ambitious, but I think we have to be positive and there is always lightning to fall back on.

If we had known a year ago what we know now, I do think we could have avoided some of this as I know we were not careful enough and simply wanted to get DD back to normal without realising the consequences, but no-one warned us what could happen and to begin with our GP advised us to let DD do what she felt she could when she was well. This simply resulted in the "boom and bust" scenario which we all know about!

We had a busy weekend and DD was tired and didn't sleep well on Sunday so we kept her at home yesterday and will do so again today. We are extra cautious now and I am beginning to feel frustrated by it all but I know that at the moment we do not have a choice.

I do so hope your DS starts to feel better soon, and Nickschick try to take care of yourself as well. It is easy to get dragged down by it all and I know I felt beside myself with worry especially before Christmas. There have been some dark times but hopefully we can help each other through them.

Hi to Dwardle and Optimistic, keep in touch..

Hi to everyone, hope all is well. Taking DD into school soon so will check in later. Post soon...

Hiya we are going in school tomorrow for a 'illness panel' so Im not really sure what will be the outcome so far he rarely manages a full week- I know that it looks bad for the school records but its lso bad living with it - I just hope school re supportive so far they havent really bothered (sams year 8)- Well we were at the out of hours emergency docs yesterday Sam has severe tonsilitis for the 2nd time this year it really knocks it out of him.

O know wht you mean about knowing stuff last year that you know now I too feel that we will be more in control once Sam is over this latest bout- op mumma hope your dd is doing well ty all for being kind and for helping me feel not so 'alone'.

Hiya nickschick - hope you don't mind but I am in Education and worried when I read 'illness panel'. it makes it sound very heavy. If you have documentation, take it with you. Sorry if I sound like I am telling you stuff you are already doing. Don't mean to.
You must NOT worry aboout school records - that is not your problem at all and is not your son's either. Who is meeting you - is it just teachers or anyone else too? There is stuff on the AYME website about school and education and entitlements if you need it. Also, if you are worried about their approach, you are entitled to take support ( parent partnership in my county)
School need to be supportive so if you think they are sceptical or don't know about cfs, maybe take some literature. There is a very good pamplet explaining it in plain language on the Great Ormond St website (if you can't find, try googling cfs and teenagers. My DDs consultant came to meet school, which helped a lot and consultants do do this - it is part of multi agency working.
Am going on a rare night out so will not be online again today but if you need any help re school, please ask. Am not good on cfs but do know about schools!!! Hope this is not overstepping the mark and please tell me to go away if you had already thought about all this!!
My dd is on 3rd day of feeling awful this week and has turned down trip to ballet cos of that. Do understand how you feel
Hi to 21again and OM

ohhh thanks - i rang the lea up yesterday and apparently theres 2 student support workers there the school nurse and the ewo .....i have all the documents from hospital checups etc to take and my dh is coming too i just feel a bit intimdated i think bcos hes been at school almost 18 months and this is the forst time we have ever had a 'meeting'.

Have a lovely time tonight ,hope you dd is soon feeling bit brighter.

Hi you all.
joining this one as am in despair over DD (17).
CFS has not been diagnosed (GP won't acknowledge it) but her symptoms are exactly as you all have described. But now the panic attacks overwhelm her and seem to have taken front stage even thugh she frequently has the out of control thermostat thing (very interested to hear that was a common symptom)
My BIG difficulty is DD's obstinate refusal to carry on with any treatment that does not work immediately.
She's abandoned CBT with CAMHS because therapist was only training and told her he couldn't see her through the treatment.
Took her to a hypnotist today which she felt positive about when we first came out but because she had panic attack on way home (we stopped to try and find her dress for a party she's looking forward to - she hasn't been out for weeks) she has now taken to her room with light off saying she's never going out again.

I feel like I can't keep taking her to a hundred different types of 'healers' (whoever they are).

She hasn't been at school all this year except for maybe two days and only goes out for appointments.
GP says she is not depressed.

I am so sorry that we all are dealing with this in our DCs - it's SO hard for all of us.