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!

Still feeling grotty and rather cross as her newly found social life is on hold!!
Thanks for your support 21again. Glad your DD is doing so well. Well done to you all!

Hope your DD is not too bad Optimistic. There are a lot of colds around atm, not quite sure how we have managed to avoid them so far!! Hopefully she will be feeling better by now.

Took DDs to see Marley and Me today, we all sat there sobbing away, but it is amazing to have planned it and not wondered how DD would be feeling. I didn't for one minute think that she wouldn't be able to go, and I think that is the big difference now. It has happened relatively quickly and I checked the diary today - DD tentatively started school on Feb 3rd after some really bad weeks, and has built up to four days per week schooling now. She hasn't had any bad days in that time (seven weeks), and although I can't confidently say that she has recovered completely, I am positive that she is stronger and looks better than she has for many months.

Thinking about Mother's Day and wanted to add that the best present of all is seeing our DDs well again.

Nickschick, Dwardle and Lois - if you are still around - how are your DCs?

Optimistic - enjoy the day and post soon..

Hi there!!

happy mothers day x

The thread seemed to be 'resting' the past few days so ive only just checked it .

Well things havent been very good here Sam after a full week at school the week before only managed 1 and a half days at school this week, on Tuesday they confirmed at the hospital that cfs/m.e was the only concluding diagnosis left,Sam will see a counsellor (reluctantly) and a physio (the consultant urged me not to embark on any treatments not from the nhs believing that he needs time to cope with his feelings now but in the future may feel that he is ready to tackle it) and the registrar will write to school and the lea to confirm this diagnosis and ask for a structured programme of work to pursue at home and suggest part time schooling - I feel although I know she has done her best that by thinking about part time schooling we are defeating the object of Sam being in school - he loves school and whats to say that part time days will be the days he feels ok? if he is well enough to walk hes in school so work at home is an unneccesary pressure.

I felt so on edge about this I foned school and they agreed with me that work at home would pressurise him and a short week would not neccesarily be on days he feels 'good' so we have agreed to keep things as they are (Sam attending when he can) until someone comes up with a better plan.

Sam is sad and tbh I am too.

Nickschick - so sorry that Sam is not good atm. I can see from your posts that he is not going to be happy with pacing (although if you want some more info on it look at sleepydust website under "tips for sufferers").

Have you looked at the lightning process that Optimistic's DD did? I have to say that it seems to be the one thing that gets quick results, and Sam has been ill for such a long time now and sounds like the sort of person who would be determined to make it work for him.

Try phoning a local practitioner for a chat. I know that the cost is going to put some people off, but you may consider it right for Sam. Optimistic will probably be along later and she can give you better advice.

I know how hard this is for you and you have to try to be positive for Sam. I just don't know why this happens to our DCs, and I read the other day that experts are seeing an increase in the number of adolescents suffering with CFS. Maybe they are under too much pressure - I know that our DD is more relaxed nowadays especially about her schoolwork. She is not taking it all so seriously whereas before CFS she used to worry a lot about getting everything done. There is more to life than exams, and their health comes first.

Keep posting everyone..

Nickschick - just noticed your point about the consultant advising you not to try treatments not on NHS,so you may wish to ignore what I said about LP.

Thans 21again,I am hoping that the physio might talk some sense to him.

Hes gone to school today and managed to hang around the football pitch with some friends.

Its definitely the uncertainty that is upsetting factor.

So sorry to hear you are feeling so sad both of you...I really do know exactly how you feel. I agree, nickschick, that the registrar is trying her best but my DD was like Sam. She really, really wanted to go to school but her physical body kept letting her down. I think you should do what feels right for Sam and that sounds like part-time school. Is Sam ging to have CBT counselling? I know 21agains DD did well with this. I see from previous posts that the school haven't been that great. I printed off the info from the AYME website including the one which describes what it feels like to have CFS and they did read it. It helped.
21again - there are traits in our children that seem to be common in CFS/ME. Both LP and Dr Crawley agree in this. Perfectionists/high achievers/sporty etc.These seem to be common...
Keep going everyone

Nickschick - when I said part-time schooling I meant what you are already doing not something imposed from on high.

I know you probably don't want to hear this but I really, really recommend LP when Sam's ready. Of course NHS people don't want anyone to try anything outside because they believe they have the answers but in Sam's case they have been utterly appalling in taking so long to diagnose. I think allowing Sam time to come to terms only entrenches his illness in a way. I know that most of us feel we have to do something positive but it has to be things that our DC want to try - if Sam is reluctant to try counselling presumably you are questioning its value.
I hope I haven't been too intrusive here but I'm so concerned about you both. It's a truly horrible place to be for you right now.

opmumma thanks.

When I foned school to say despite the registrars reccomendations as far as we were concerned what was working for us at the minute was how we were already doing it - the pastoral teacher said after our meeting it had brought a lot of questions up as to how Sam can have been in school almost 18 months without and support from staff with knowledge on cfs/me and she actually admitted that my rather blunt responses had got them thinking and she was going to oversee all of sams education and well being in school and she was researching as much as possible to get a greater understanding I really felt that a barrier was broken down.

Also I 'buttered' her up by having all the letters sent direct to her so i can be ssure when i fone and spek she will have had the info and i cant be passed along.

Sam quite honestly isnt 'ready' for any sort of treatment hes really been stunned by this confirmation and hes finding it hard to accept in his own words before now only he knew how he was feeling and now someone hs confirmed he is feeling like this for a reason its a whole new ball game - i have said its not a full stop at the end of a sentence its just a comma in the paragraph iyswim and things will get better/different and as nd when we will work it through.

He doesnt want to see a counsellor really i think he has a fear of opening up and not being able to lid it again so ive said he must give it a fair crack and then decide.

I have explained to him that me/cfs is a very fluctuating thing and nobody really knows where it starts and ends so really anything is possible.

I think the registrar was keen to say to let sam adjust so as i didnt go md buying herbs and holy water etc etc and expect miracles i think she wanted to give sam the support to feel like m.e can be worked through if not then there is other options but for now accept a diagnosis and confront how he feels now.

I read this back and it all sounds very 'deep' but you know yourself that any chronic illness is like this.

Nickschick - Glad the pastoral teacher is being so helpful, it should make a huge difference to Sam and to you to know that support is available at school. It certainly will take the pressure off there and we found that was one of the key issues.

Try to be positive with Sam, it will make a difference. One very small thing with our DD is that we never referred to the illness as M.E, it was always chronic fatigue. The reason for that was that she had previously read an article about a girl with ME who had been ill for years, and she was terified that she would be like that. DD coped with the fact that she had CFS. It may seem like a small thing but it was a big factor for DD - so what I am trying to say is to be positive in every way possible. He will get better and I am struck by how strong he must be - both physically and mentally - to be doing the things that he is actually doing.

Does Sam still try to play sport? If so then could he be persuaded to give it up and give his body more of a chance to recover. We have also found taking DD to a homeopath has been good for her. It gives her someone else to talk to but not a "counsellor", and I think that she was convinced that these sugar pills were going to work. It doesn't really matter the result is what counts.

Optimistic how is DD's cold, is she feeling better?

Post back soon..

You sound really together, nickschick, and you're right it is a deep thing. I'm pleased that no-one has suggested that Sam is at a full-stop!!I guess that's what I was worrying about. It can seem like a massive albatross when people allude to CFS being something you have to live with. You are right in that human beings are always changing and so nothing stays the same for long. Also Sam is young and determined. Am so glad school are being better. I admit I too have done the 'thank you for being so supportive ' thing. Even if they haven't been they are now! I also agree with 21again. Calling it ME was a real no-no for us as was DD joining in on a website. She was always freaked out by the worse cases. It was like looking into a pit for her!
We found it so difficult to treat DD like a normal teenager and all the fun went out of our family life. I would urge you to stay very positive, put school to the back of your mind and try to enjoy your family life!
Am so glad you didn't go nuts after my last post - was worried all afternoon that I had over stepped the mark so thanks for posting back so soon

21again
DD has been off again today. She went in yesterday but this cold has been really awful - poor thing!! She is very clear that it is only a cold but that she feels completely grotty and I am trying hard to check how I would respond to my boys and do the same with her. At least you can see a
horrible cold. She is determined to go in for the rest of the week and does look better today. Thanks for asking

21again and opmumma .....hi

I despise the bloody names m.e and cfs i almost always end up saying 'remeber yuppie flu?'

I do try and remain positive with Sam but hes 13 and he is a very bad patient lol...he does not suffer easily or with good grace in between the good days and the bad dys we have cantankerous nasty sam dys -he is very into sports and just will not face limitations -so i have now come to letting him (within reason) do stuff then when hes had a 'bad' time reminded him of some energy hes wasted up - for example if hes well i njoy seeing him going off playing footy with his friends but 1 game leads to another leads to walking the dog etc etc nd then crash hes worn out so im gradually trying him to get the 'pacing' idea although his reluctance to accept his illness leads to his reluctance to accept the consequences.

Thankyou for saying you think he is strong I say to him he has a strong heart and a strong brain and sooner or later this illness will realise it cant beat him!!

What we have learnt to do as a family is to have a back up plan - for example if we were planning to go to a fair on saturday and sam looked 'poorly' we dont say its that something 'crops' up and another date is arranged.

If Sam is going somewhere we often happen to be nearby so he can say if he needs to leave without appearing a wuss.

Some time ago I put some tic tacs in a brown tablet bottle and told him they were prescription and this was a 'cure'- sadly although he took them with enthusiasm it didnt work!!

TIC TACS DO NOT CURE CFS LOL!!!.

In all honesty Sam has never known I look on the net at support that i think to him would be quite distressing I always say I dont know and theres no real experts we just have to work it through!.

What I do find hard is distinguishing between the m.e and any other random infection its v hard to differentiate so i try and go with the practical side and then assess.

opmumma- hope your dd is feeling better soon xx

21 again hows your dd?

I really appreciate your support but im concerned im becoming a sympathy sucker .........

Hi everyone - sorry have not been posting. Working at home for a week was great but then it all backs up!
Big q - HOW do you know when dd is ready to think about something like LP and how do you choose an alternative therapy? I have heard acupuncture praised but do not know anyone who has used one round here - tho there is one locally. Have had a homeopath recommended but was not used for cfs! Someone just rang and was pushing food diaries and food intolerances.
Mydd is having better days and has been doing bit of school ( odd few hours) but is quite resistant to working - she seems to fear it but she did have huge panics and this has now stopped. Seeing Dr at CAMHS tomorrow Making her get up early has helped with the sleeping and she has been going for a proper walk most days. School have been so supportive. Sometimes I wonder if it is because of what I do but doesn't really matter as what counts is how they are. Great to hear what you were saying about school Nickschick- you are not a sympathy sucker or if you are then I am one too! This is so cr*p for our children and I also find all the well meaning comments and advice quite hard to deal with - esp the I don't know how you manage type. You just do cos you have to.
OM and 21 - great to hear your dds progress - keeps us sane as there is light at end of tunnel - very important.
Bit worried that tiredness is turning my post into incoherent rant so will stop now!

Just looked at the sleepydust site - really interesting. Thanks for that link.
Also, dd was supposed to have jabs last week and I didn't let her. Did you let your dcs have their jabs (the routine ones, not the cervical cancer one)?

All my children have had all their immunisations which at the time i decided to do with the best of intention and information now im thinking was i right?

In answer to your BIG Q - dwardle - Is your DD sick and tired of being ill and would she do anything to get better?? I knew about LP at the start of DDs illness 2 years ago. I regarded it as a bit of a golden bullet and so therefore what if it didn't work? TBH we got sooooo desperate and were beginning to be pushed into home tuition and EWO - land by school we just had to do it. Also by sheer coincidence I talked to someone whose DD had done it last year and is back fulltime etc. I was able to pump her and so lots of reasons came together. As far as seeing if she was ready the LP prac. got us to fill in lengthy forms and read a book before we could start. I really don't think it's in their interests to take on someone who won't access the training. Before that I got my DD to watch the recovery videos on Phil Parker's site and it wasn't long before she asked to do it!!. I do think acupuncture helped her headaches but these things treat individual symptoms rather than the underlying neurology of CFS and so tend to work for a while and then stop being so effective.
Do look into LP Dwardle and let your DD trawl the videos on the site. They are incredibly inspiring and as my DD said 'If they can do it so can I!!'

Nickschick - thanks for asking. My DD back at school today. Her cold has been truly disgsting! I know I shouldn't be so mean but really I've never seen anything like it!!! Interestingly the LP prac backed up my friend the homeopath who said that it was a great thing as it shows DDs immune system is kicking back in So as we are now fully paid up cranks we're celebrating!

Hi OM - Thank you so much for your really helpful comments - food for thought. Glad to hear your dd is much better - interesting about the immune systen kicking in. Nickschick - am not sure whether I was right or not re the jabs- was a real spur of the moment thing. I just thought that if her body was not funtioning well, should I give it anything else to deal with? She can always hav the WHEN she gets better - which she will. Had very useful and interesting conversation today with psychiatrist who talked about little steps and praise - but it sounds like your ds is not at the accepting stage yet. Think we got past that and almost into too accepting - apathy and poosible depression - but feel we are on the way up from that now.Think that fighting it and trying to carry on, whilst very hard for you, is a positive mental state. By the way, read my post from yesterday - When I said well meaning comments, I meant from people I meet/ know around and about , NOT on this site!
Totally agree with all of you about websites and chatrooms for dd. She has not been at all keen and I am glad. Have also avoided talking to adults with cfs/me too - very depressing.

Just checking in really quickly as I haven't had time to look at the posts properly today. Wanted to say that re jabs - we got DD a flu jab last November as GP and paed said it was a good idea (all this started with flu xmas 2007). Following the jab she had the worst relapse ever and although I cannot say whether or not the jab had anything to do with it I have certainly decided to not let her have any more until she is recovered.

We are told not to take babies in for jabs if they are unwell and so I think it makes sense to be careful with CFS sufferers. Just my opinion..

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

Optimistic - about your DD's cold... When you wrote that the LP prac and homeopath agreed that DD's immune system was kicking in, did they mean that the immune system was simply dealing properly with a new virus or was this a virus that had become "stuck" in her body and was now being dealt with. I only ask because of something a herbalist said to me last year and am wondering if he was right!!

Dwardle it was good to read your positive comments about your DD. If she is sleeping better it will be a huge boost for her. My DD's therapist recommended fish oil to help combat any depression and the best brand that I have come up with is from a site called www.mind1st.co.uk. I know there are so many different things to try and it can seeem overwhelming at times when different people keep throwing information at you, but keep it in mind - it is another piece in the armoury.

Nickschick how is Sam now? The Easter break will give him a chance of a rest and maybe get onto more of an even keel.

It has helped me so much to have people here to talk to who know exactly what this is like. RL friends are important but most have no idea and I know that there are some people who simply think DD should have "pulled herself together" long ago. Keep posting everyone - we can help each other.

21again - in answer to your question - I don't know!!! Either way it doesn't really matter to me it just made me feel better!. She is a lot better today and I'm pleased her body seems to have dealt with the cold like a 'normally healthy' person would and that is obviously important.
She ended up having last Friday and Tuesday off but that's it! It is going to be like this as she is a bit like a pre-schooler again, more liable to pick things up atm.

Hope everyone has had a good week. We've got one week to go before the hols and then GCSE revision for DS1 . Possibly...or am I just being optimistic?? Before you all think I'm terribly pushy I'm going to qualify by saying his 1st exam is 28th April as he is doing art and he has to have all his r and d work done by then - eek!!!

Would appreciate your thoughts....
As you know we were out of area for Dr Crawley and way back in January went to see local chap who said he'd refer us to Great Ormond Street as they have a CFS/ME service...
We hadn't heard anything until today. So I was perfectly straight with the sec and told her about LP. She said interestingly that GOSH wanted DD to have a Coeliac test before they would see her. I'm inclined for her to have the test ( will check it hasn't already been done) and see how it goes and how she goes. When we get the appointment will see how she's been and probably cancel so that another child can use it.
As far as we are concerned she doesn't have CFS anymore but I feel loathe to cancel so soon after Lp.What do you all think?
Also useful info. Has everyone had their child tested for Coeliac??? If GOSH see it as a prereqisite who are we to argue????
Have a great weekend

Hi OM
When we went to see Consultant with dd, they screened her for coeliac as a first step - they said they always do.(She was negative) As cfs is a 'diagnosis of exclusion' which means they rule everything else out, I suppose that makes sense. I know an adult who was recently diagnosed with coeliac after lots of toing and froing with people wondering what was up. She is a million times better now with proper diagnosis and treatment. It is only a blood test - at least that was what my dd had so I suppose there is nothing to lose. I would hold onto appt for a bit if it was me, esp if is a while away. GOSH factsheets on cfs are very good, incidentally.