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 am at work and have just had a phone call from DD to say that she is not well enough to attend the unit today.
I realise this is totally opposite to most of you and your DDs, and this is going to sound really weird, but I am so happy , Not because she is too ill to go in, but that she came to the decision herself. - fireworks averted for now!! This is a huge step for her, as she is adamant that she is better now and will not normally listen to us when we say she still has a way to go to be 100% fit. - even when collapsing in a heap because she cant make it to a chair! She says all teenagers get tired, which they do, but too tired to walk to the nearest chair?? I am beginning to think that she does not remember how "wellness" feels, as opposed to "illness", so she accepts a level that others would feel very unwell at. Am I making sense?? It makes sense in my head anyway!!
My first step was to get her to recognise the illness again, now we can work on how she will respond to it, if you get me! I think I'm becoming a bit of a psychologist with all this!!

Positive - not weird - I understand what you mean. That is great that she has recognised that today. I hope that a day at home helps her a bit. I'm finding it v. hard with dd to judge whether to send her to school or not. School are already on at me to increase her attendance ( she hasn't even consistently managed the 3 hrs a week we're trying for), so I feel a bit under pressure. Yesterday on her "home" day I took her to the playpark for a 15 min visit - I wanted to see if she could cope, and wanted to let her have some fun. Anyway she is really tired today - only got out of bed to take ds to childminder.
She's due in to school at 1pm, and although I want to keep her home, I feel a pressure to try. Presumably you've all been there? Reading this makes me realise I shouldn't even be attempting school today.
I also read your earlier post about your review of the carer package. I'm glad that's been kept in place for you. It did make me think that I might be able to get some help for dd, as because of her age, even though she is not as unwell as your dd was I can't leave her at all. How did you go about organising it? Who should I be contacting?
Hope everyone else is ok. V. impressed by the goal scoring 21 !

Katsh - do not let school put pressure on you regarding DDs attendance. It's a horrible place to be . The school are under enormous pressure even with their authorised attendance now but they absolutely should not be passing that on to you. You have enough on your plateas it is. I suggest you go on to the AYME website and print off the 'How it feels to have ME' page and give it to them to read. I never did get my DDs school to undertand that if she's ill, she's ill!!Have you looked into home tuition for her? You could discuss that as an option with school.

Positive/21again - no DD has nt gone in today and we had a shouting match about it I'm afraid. DD does know what it is to be well now but I'm afraid I'm so bad at accepting that she is what she terms 'normally ill'!. I always think she is going to run the ME neurology again. That is something we have to watch as she could easily slip back imo. She is adament however that she just feels under the weather because everyone is having been back for a couple of weeks etc etc. To be fair to her she has had a huge amount of coursework to do since she got back and I think the pressure of today's French oral was a step too far (she hates French and has missed so much she feels very behind!) Again she is sure that is not the reason 'I'd only be putting it off Mum and I'd rather get it out of the way, anyway the teacher's rubbish!'

I don't know.... All I know is that tomorrow's another day!

Katsh - I was advised about getting a carer and first approached the Childrens Disability Team at our local Social Services office in January this year. It took ages to get anything sorted and we had to really fight to get it!! - Don't want to put you off, just be warned! DDs consultant was behind it totally and was fantastic in arguing for me. Her view was that it would be "unhealthy" psychologically for me and DD if I had to have to give up work and do the 24 hour caring that DD needs. - Totally agree with that I think it would have sent me really crazy and really not helped DD at all.
I would advise that you phone up and get someone to come and assess what help is needed. In one meeting when it looked as if we were going to be turned down, Consultant jumped in with the point that DD was less able than a year old baby and social services would be appalled if a baby was left alone at home! I also had to get a little stroppy assertive at one point and I did ask them who would be held responsible if DD fell down the stairs and injured herself - Them for not putting in place what we needed, or me for not shouting loud enough that we needed the help. Certainly did the trick!!
Good luck! It has made a huge difference to me and allowed me to begin to live a little bit again without constant pressure and worry.
Also agree with OM about the school issue. They sounded really supportive, but you do not need to have any pressure. Could the LEA supply a home tutor fro a while, ours did for the majority of last year. If your DD cannot get to school because of illness she is still entitled to 5 hours of education a week, minimum. I really urge you to consider this. If we had given up on school sooner, maybe DD would not have been so bad. We struggled on last year because of all the pressure, but as soon as we gave up the school, the release of that pressure was immense! She can then join back in at a pace that suits her, when she feels able to.

OM - Hugs to you after your "discussion" with DD. I hope relations are restored quickly!!

Thanks positive and optimisitic. I got on with trying to answer my own questions this morning! Told school she wasn't coming in, and then found a local carers support team, who are sending someone out to talk me through my options and how to deal with the la on this. I really could do with help, as I have no time ever in the week to myself - either to leave the house or stay in with dd cared for. I was due to start an MSc but have had to defer for a year, so it's felt a bit crushing to lose that along with dds health. I'm seeing consultant next week so will check she will support me in that. Feeling on the edge of a migraine, so best stop staring at the screen and just try to get through the afternooon. Hope the non-school attendance all round is short lived for everyone.

ask your consultants about immunoglobulin treatment. I had it after suffering with post viral complications from parvo virus. I was lucky enough to have been put on a clinical trial. It worked within 10 days of initial dose and i havent looked back.
BTW I was so bad with ME type illness i thought i hadnt got long to live.
I was treated at the manchester royal infirmary and it has been a total success

i was treated for parvo virus which was eventually detected when i self diagnosed,but Immunoglobulin therapy helps many post vral serious illnesses.

Have included web page for any that want to read.
www.prohealth.com/library/showarticle.cfm?id=4809&t=CFIDS_FM

I was that 42 year old woman.tired,exhausted ,fed up with all tests coming back negative so i went looking for a cure and got it.

if anyone wants any help,just ask

Thanks Alypaly, Really interesting read! I am pleased you are now fit and well. Were you literally that lady, that did the trials?

Katsh - so pleased you said NO to your dd going into school Do not be pressured.
My dd's consultant came out to talk to her school - very useful.
Also, at my school,we quite often have multi-agency meetings where everyone gets round table to discuss - very helpful. There is also a thing called a CAF a common assessment framework - which can be started by a number of different agencies. Ask me more if you need to. You know your daughter - and have a good understanding of me/cfs.
Pos Att - think it may be a sort of breakthrough!

OM - just re-read your post and can really sympathise. There are loads of bugs going round - my ds has shocking cold and loads of dd's friends have it too - is so hard to think 'normal ill' not 'me ill'
DD's therapist once said to me ' why would she want to miss school' and I had to stop and think. So easy to get cross too, isn't it!
Hope the rest of yr day has gone ok
Big hugs all round.
dd went to school again today and has been upbeat despite pain and sore throat - which she tells me everyone has got! Think I need a holiday!

positiveattitudeonly
yes i was that 42 year old believe it or not.. Didnt know the clinician was going to put his results on the internet...found it when i was scrolling through parvo virus papers. didnt name us but i knew how many were in his trial and what the results were.

I am sure it can be used to help people recover from glandular fever and other nasty UNKNOWN viruses.

The immunoglobulin just mops up the remaining viruses and then it give you like a multi protection using other peoples anti viruses

alypaly - just read article. Really interesting. So glad you are now fit and well.
Stupid Q - what is parvovirus?

if you have children it is known as slapped cheek syndrome. Most youngsters get it from the age of 4-10 normally.
They get very red cheeks and a rash and are off colour for up to 10 days. They just need calpol and sometimes a few days off school. Parvo virus in adults is like chicken pox ..in that it can make you very ill if you didnt have it as a child.
It left me with symptoms of chronic fatigue and ME which is why I came into this post.
Wondered if anyone had asked for immunoglobulin treatment to get rid of ME and chronic fatigue.

Sore throats all round at the moment but DD does seem to be coping with it ok. She has been taking all sorts of homeopathic remedies over the past few months and amongst them is an immune boosting one which hopefully will help her now. Sorry Optimistic and Dwardle that your DDs are poorly right now, it does seem to be unavoidable, and I hope they feel better soon.

Positive and Kasch your poor DDs are suffering and it's hard to watch. Is it worth keeping them at home for a few days to get them back to a reasonably stable condition and then start pacing again? I don't know too much about pacing as we didn't ever see Doc Crawley but that was what worked for our DD.

Alypaly thanks for that information, really interesting.

Hi Choc how are things?

Thats very interesting alypaly and something I shall be enquiring about.

Positive and Kasch its bloody awful this isnt it? the uncertainty and the limitless.

Sam again isnt well hes exhausted spending 15-18 hours in bed quite literally,last night (well early evening cos hes back in bed by 9.30-his choice )he 'managed' to venture outside the door and 'stood' on the pitch for a grand time of about 8 minutes.....his friends were so glad to see him as were we that he was 'able' to stand on the pitch .....looked out again and hes sat on the pitch 'supposedly'messing with his fone - he wasnt he couldnt stay stood .

We have a appointment soon with the consultant and the physio.

hello everyone else xx

Nickschick - so sorry Sam is feeling bad. You, Positive and Katsh are having such a hard time watching your DCs right now. Have you read Choc's posts on the Perrin Technique? Her DD is having good results and it may be of interest to you. I am thinking of you all and hope things pick up soon.

Dwardle and Optimistic how is everyone?

ty 21again im a sympathy sucker ......

The thing is until Sam acknowledges what he has and tries to understand himself nothing will work bcos as it is he feels a failiure and fights his symptoms until its too bad and he cant fight anything.

I tell him everyday that he is Sam his illness doesnt define him its just a rocky path.

Nickschick - am so for you atm...Why do you think that Sam won't accept his illness? If it helps my sister - in -law's brother was the same at Sam's age. He had CFS plus Chronic pain. In the end he discovered a love for graphics (he was a computer wizz) and as he told her , he found something that made him want to be well again for. Or rather it gave him the motivatin to accept his illness and then accept help. Does that make any sense?

21again - DD still looking ill and I am now mortified again as today, guess what? I have had a stinking headache too and DS2 is also feeling bad....She did go in and will tomorrow too i think.!

I am feeling v. proud of DS1 who goes to local grammar and scored winning try for his rugby team against local top public school . So I'm being a dreadful competitive parent but had to share my smugness with you all. Please forgive!!!!

Nickschick is it any good trying to explain that if Sam had a broken leg he would need help to get over it. In the same way there is help available that may help him to recover. For OM and Dwardle's DDs it was LP, and for my DD it was homeopathy, CBT and pacing. Thinking of you and Sam..

Optimistic - well done to DS1!!! . Were you there cheering him on? Sorry you may be coming down with the cold, hope it isn't too bad for you.

Hi to Dwardle, Choc, Positive and Katsh - hope things are OK.

Oh no, me again, needing to pick some more brains!!!

DD is really struggling - Nickschick, ours sound very similar!! - hard isn't it???

Anyway, just phoned up the clinical pyschologist (CBT) lady, and explained that I was worried that DD really is not coping with the 1 hour and was supposed to be increasing to 1 hour 10 mins next week. But it will destroy dd's self esteem and confidence not to be able to increase as she wants to. Her response was that we should keep going with the increase as DD will get used to it over the next few weeks/months!!
Will she get used to it, or will she crash down further and further and we face another winter of total 24 hour care again?
Where does CBT cross the line to becoming graded exercise, which I understood to be really bad and just pushing on regardless of how you feel? Or have I got this all wrong and am just being a protective mum??
Fed up with all this!!

Although it does sound as if you are all fed up too, which is reassuring, sorry!!

Hello all - am joining this thread as dd has undiagnosed something or other that has disrupted schooling for ever but most particularly last year meaning she has to re-do the year (AS levels and do an extra year to catch up.)

Thing is we (randomly) took her off wheat and gluten which had an amazing effect. She was sleeping well, waking up early, hasn't had a single panic attack or missed a day of school this year (3 and a half weeks - unheard of!)
UNTIL... she was in a car on Monday when a van reversed into it knocking her head on the head rest. Car and all were fine - so was she immediately but since has had the inevitable whiplash and has taken to her bed again.

I'm so hoping she'll be ok by Monday and be back on track.
She was doing so well and I can't bear the thought of her falling back into old habits and hope she can remember how good she felt being able to engage with school/life/friends etc.

Welcome Littlepollyflinders! I'm glad you found us and am really hoping that your DD is back on track by Monday! I'm sure she will be. In my limited experience, when our DC have something that has had a huge knock on effect we can't quite believe it when they are well. OK, she had an accident and had whiplash but there's nothing to suggest she will take to her bed for the duration! I'm sure she prefers her new-found health too. Just try to look on it as an accident that lots of people have and she will be back to normal in a week or two. If not then you have to be 'tough mum' and push her back into her new life.

You didn't ask for opinions but, hey, hope some of that made sense and we do all understand your hopes and fears !!

BTW there is lots of useful stuff on this thread and it is well worth a read even though it will take you ages.

hello all - sorry so many DCs are having problems managing school atm.
Positive - when you said CBT lady said go ahead with plan to increase time at unit regardless of the fact she is not doing brilliantly, a big alarm went off. To me, that does sound very graded exercisish too which as you say can have totally adverse effects. I really really feel for you with the issues of self esteem and being positive etc etc, but my view is to increase could just make things worse. I dont envy you your decision one bit.
Nickschick - I agree, you cant even entertain the idea of any of these therapies without DS being on board. Perrins needs a lot of commitment and is an on going longterm treatment, not an easy fix (plus financial implications of this!).
Polly - welcome here - hope your DD recovers OK. She has understandably been traumatised but hopefully given a few days doing very little,she will be OK.
Optimistic - hope you and DCs are feeling better
21 & Dwardle - hope things are OK
DD wasnt very well last weekend but has done really well this week. Walked a bit further, went out for lunch yesterday. Unfortunately, the online teacher decided to increase the number of classes from 2 to 4 this week and this morning DD was stressing herself out completely about not being able to cope, having an assignment to do and feeling sooo tired. I basically told her to skip the class and rest and we emailed the teacher and asked whether the number is likely to be 4 permanently or was it only a one-off, so that we can pace this better. Like so many of our children, DD is very hard on herself and has far too high expectations which she needs to learn to reduce. Sorry this has ended up so long, have a good weekend everyone.

Positive - for you!The trouble is no-one can give you the answer you want.
The problem with all this 'pacing' is it doesn't get down to the nub of the problem imo. Your DD is still running the ME neurology and has no real tools to help her when she feels ill. As you know, LP is totally the reverse of what pacing is about because it believes that pacing focuses on the 'ill' bit all the time and gives no tools to use to get back the 'well' bit.It becomes a vicious circle.
If you are going with the CBT lady, however, I think you must follow her advice and not assume there will be negative consequences. Has she worked with ME before? Do you feel she is an expert in dealing with this? That would be my only concern. Does she actually know what she is talking about regarding ME/CFS and has she seen recovery in other patients of hers using her methods?
Sorry to be pushing with lots of rhetorical questions but I've been thinking about you a lot and it's the best I can do!!!

At least your house is shiny!!!!!!