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!

Hi Dwardle,

Glad the link was ok. School have been a nightmare from the beginning. Did not believe DD was ill, questioned the authenticity of consultants letters - wont go into that one!! threatened with EWO, told not to mention her illness at a parents evening, refused to allow me to commuicate with staff other than one tutor who simply did not believe me and did not pass any info on to others. Also told her illness could not be mentioned at her statement review as it wasn't relevant (statement for dyslexia and dyspraxia)- she was only able to attend 40% at this time, I went into the review with a consultants letter saying DD must not be in school and needed a home tutor, only to be told they expected DD in at least 6 double lessons a week to start with, then increase asap! Now having home tutor, but they have now totally swung the other way and have given up and I get the impression they feel there is no point educating her as she wont be getting any GCSEs!! My arguement is she will need some help at some time in the future and I dont want to close all the doors now even while she is so ill and unable to do much! I find the whole thing very fraught, but just spoken to DDs local consultant who is brill and we get on really well and she has said she will come along with me!! How can they not listen if she says anything now!!

Sorry for outburst! This is only a small amount of the issues I have had with the school, but I will stop there. I do have to say that I have always found some staff to be excellent, but unfortunatey they seem to have their hands tied!

Let me know if you are hoping to go along to the conference.

Just been out enjoying the glorious sunshine to help the vitamin d levels which are low, DD now exhausted, but I am "glowing" (translated as slightly too pink for comfort!)

Hi all. Have been away for half term but am interested to read all the posts. School sound horrendous , positive. I am a primary teacher and I also felt the 'pressure' of keeping up attendance. One of the main reasons we did LP was because of the 'threat' of EWO and home tuition. (Good on you Dwardle for getting the book. Do ask if something doesn't make sense.)
I am lucky because my DD managed to keep up so they couldn't criticise her work. Play them at their own game. Get your big guns out too ie GP/ consultant etc. Print off the guides from 'ayme' and take partner with you ( made mine dress in suit and pull out blackberry every now and then - borrow one, a blackberry that is, if you don't have one!!! It is necessary to make sure you are always ahead of 'the game' with letters etc. I even got my GP to fill out adult 'sign off' forms for my DD.
Please look into lightning. If you read 'the book' at least you have an idea of what it's about. At no point do they suggest that ME is a mental condition, as someone said earlier i think. My DD is a very straight forward thinking maths/chemisty type girl who doesn't do 'pyscho babble' as she delightfully puts it and would not buy in to anything that she could see straight through. LP is very factual and in my opinion gives CFS/ME sufferers the key to health. Unfortunately, as I've said before it goes against everything the NHS has to offer and is the opposite of pacing which is why your DD may prefer it.
I know I'm repeating myself.
Love to meet up with anyone one this thread in London for a coffee/ glass of wine/lunch even if I don't attend conference ( it may make me cross!)I live very near.....
Keep posting all....

21again - so glad your DD is doing so well. There's no reason why she should not be perfectly fine at school all day if she wants to go and does not feel ill any more. Sounds like you've cracked it to me!!. We're taking 6 girls to Suffolk tomorrow for my DD's late birthday 'event' until Sunday. How great is that?? She didn't have a sleepover for 2 years!

Hi Positive - glad you've got Dwardle and Optimistic to give you advice on the education side of things. It really does not help the situation when school puts you all under so much stress, and I am very impressed with your consultant agreeing to accompany you - that should really put the cat among the pigeons.

Optimistic I am so thrilled your DD is still well ( no reason to think she would be otherwise). Have fun in Suffolk over the weekend and fingers crossed for some good weather.

DD is really well and we are trying to make sure she eats properly and regularly. She is still taking the vitamins and fish oil plus homeopathic remedies, and she is so thrilled to be able to participate fully now. A small part of me still feels wary and I find myself watching for any little signs that may be significant. Obviously the first couple of weeks back at school will be a huge test for her but I shall try not to worry. DD will be seeing her therapist again towards the end of the second week back so that he can keep an eye on things. She is much happier about seeing him now although still insists it is not necessary.

Keep posting everyone it is good to talk to you all.

Hi all,
Glad to hear all your DCs are doing so well and are abe to enjoy life again. Very encouraging!

Opimistic - borrowing a hubby is not needed as I am quite partial to the one I have, suit could be a possibility if persuaded and a blackberry sounds really good and maybe I could just keep it afterwards for myself! Meeting is with school SENCO and tuition centre (LEA run) who provide the home tutor.

Does anyone have experience of a local support group? I have been asked to look into setting one up and am using you all as my inspiration cos I really see the value of this thread and the mutual support. Any comments would be appreciated, good or bad experiences. Thanks.

A little fraught day today! A week of having siblings around has taken its toll! Fireworks before 10am was not a good sign for the rest of the day! I am off out tonight leaving hubby in charge . Do I feel guilty?????? NO!!!!!!! I am convinced someone has played with all the clocks in the house, isnt it 7pm already?? I could get used to this idea of taking time out for myself.

Hi everyone
The sun is out, dd has gone shopping and I have a facial booked! Oh joy . Just one more day before we get into the - wake dd up, she says she feels too tired for school saga. Her counsellor says she does want to be at school and I agree. I cannot force her to go and anyway, it would only reintroduce the panic attacks, which would completely defeat the object of being at school. She has had some off days this week and she looks different on bad days - I do believe her, but I still find it so hard to accept that she isn't going in. In a way, it was almost easier when she was just really ill! This mid way stage is tricky.

Anyway; school, Pos Attitude. Please excuse - am going to put my Head Teacher/mum hat on for a min.These are my personal opinions based on my experience as HT.
First, have you come across parent partnership? The link is here.www.parentpartnership.org.uk/
They are, in my experience, excellent. They know the law, they are impartial but on your side, if that makes sense. You are totally free to take a parent partnership rep into your meeting - is not up to school. Actually, you can take whoever you like! I really recommend you give them a ring and have a chat.They are there for you.
Second, I think that you should take your consultant with you - My dd's came and it was really helpful, even tho her school is very supportive. I would also print off some info about cfs - I liked the Gt Ormond Street stuff - and thrust it at them.
Next, do not allow school to threaten you with EWO - the EWO would take one look at the documentary evidence and back off - well, the ones I work with would! If they do threaten you, you could always pre-empt them and get in touch with them yourself as a part of their job is actually advice and support.EWOs are scary if children are playing truant but not if the child is ill. You can also give permission to them to speak to your GP if they want more proof.
Next - do you think your dd is up to home tuition at the moment? What does her consultant think? Again, do not be bullied into this.If you think it is too much, ask to wait and review in a set number of weeks. Parent Partnership would be a useful help here as I cannot remember the law about what you have to agree to. My dd does not have home tuition. She just goes in when she can.
Next, am surprised that school have not included a pastoral person in the meeting- just SEN. This says much about their attitude. Do you know who is the most senior pastoral person in the school? Ask if they can attend meeting.Explain to them that this is NOT just about yr daughter's SEN, it is about her as a person. They may well not know about what has been going on and may (she says optimistically) be horrified.They are shocking - have no right to tell you what to mention, not mention at any school meetings. You could, if you were feeling really stroppy, say that you are not willing to attend a meeting until the right people are there- but it depends how much you want to annoy them! I would very strongly recommend Parent Partnership for this meeting.
If you are really cross and your documentation is good, you could ask for a copy of the school's complaint procedure, and consider making a formal complaint, but I would hold this one in reserve - you need to have a think about what you want to achieve from the meeting and have a clear idea about what your dd needs most at the moment.

Remember - parents have the right to move a child to another school but school can only shift a child via exclusion - and your dd's illness is NOT a reason for exclusion. They have a duty to educate her. Don't forget that.
Finally, have you read up on Ayme's site about school and education? www.ayme.org.uk/article.php?sid=11

Hope this is helpful and please ask if you have any questions.

Mum hat back on now - totally agree with advice about husband, suit and blackberry!!!
Do not know about local support groups - did not look myself. Have you asked consultant? DD and I are booked on conference on 11 July!

Dwardle - what an excellent post, you said all the things I was thinking as I read through Positve's post.

Positive - definitely take the consultant and parent partnership. Medical conditions are an SEN as well as dyslexia et al ...in fact her statement should probably be amended to reflect the additional needs. Somewhere else that can give you good impartial advise is the advisory centre for education www.ace-ed.org.uk/. Really can't believe with all the medical evidence you have that the ewo wants to be involved.

Re support groups I am a member of AYMElink (the parents forum). Someone in my area posted a while back about starting a group. In fact it has ended up being only the two of us, with one other lady a couple of times but still good. Not sure whereabouts you are?

The conference sounds good ..will check the diary later ..

Thanks chocaholic - was hoping I had not gone too far but was shocked that some schools can be like that!

Thank you so much for all this info, especially you dwardle for the epic post! It was so good to realise that people actually agree that the school have been bad. For too long I have been made to feel that I am the parent from hell who is out to cause trouble.
A few short comments: (or not so short, sorry)
I am so pleased the consultant is coming along.
I have used parent partnership in the past, especially to get the school to sort out home tutor and they were excellent. I will contact them, but I know they are very stretched and the meeting is only this week, but maybe they can give me some advice before I go in.
EWO ? I did end up asking for her contact details because I was fed up of the threats and I wanted her advice. The school refused to put my phone calls through to her. (she is based at the school) I eventually got hold of her after having to pretend to not be me! She was OK and said that there would not be a problem, but was not any use for advice or support for anything else.
Pastoral support ? this is a total joke!!!! The one man who has made everything so difficult is in charge of pastoral support! When DD was still attending we asked for some pastoral support for her and we were told it was him or nobody else. He has the sensitivity of a fully loaded automatic machine gun pointing at you and it is him who has put all these ridiculous rules in about who we can talk to and what I am allowed to say! Given up on that one totally! SENCO is the most approachable one from the school and DDs consultant and Dr Crawley actually gave a presentation that she attended. She has been more understanding since then.
I seriously wonder whether DD is up to the home tuition that we have in place really, but fought so hard to get it we are now reluctant to let it go. Perhaps I should just let the system do whatever they want and keep quiet until she is well enough to actually gain something from a bit of education. Or is this letting DD down, cos I have given up fighting for her. But I don?t want to fight for the sake of fighting. Oh I don?t know!!! Round and round in circles!!! ARRRGGGHHHHH!!!! Hubby is having to work due to lack of notice about this meeting so even more scary! No suit or blackberry! Large woman with my pink Samsung may not have quite the same impact!
Anyway, meeting is Wednesday afternoon so I will come home and let you all know how it has gone.

Dwardle thank you SO much for all the input. I wish you were head at the local school!!! I?ll move!
Really looking forward to the conference. Are we all going to be able to say Hi to each other? You sort of get pictures in your head about what people look like, it will be so weird! ? Not that I think any of you are weird!!!!

About the support group, it was the consultant who asked me about it. We plan to have a chat about this on Wednesday after the meeting.

Sorry about enormous post! I feel as if I have hijacked his whole thing ? sorry!

By the way the evening out was brill. Now nagging all my friends to come out with me on a rota.

Dwardle, a quick question, if you don't mind?
On DDs statement of SEN there is a "NONE" typed in the NON-EDUCATIONAL areas for objectives and provision. Should this be where a medical condition is highlighted? Her educational objectives CANNOT be met due to her medical condition, Does this need amending? Do we need to ask for another review brought forward to sort this out and get it all documented? The only hint of any "illness" is in the progress review where it says the subject teachers main concern is "...current poor attendance would affect her ability to achieve her predicted grades." How many times can you ask for a review to be undertaken? We requested the last review to be brought forward and this took place in December. We had asked because we knew her education was hugely affected but, as I said before, were told it was irrelevant to her statement. Surely, if education is SO affected it IS relevant?

Hope you don't mind me asking.

Positive - just jumping in on your question to Dwardle - I don't know the answer but ask the AYME helpline (number and times on their website, they are open every weekday I think). You don't have to be a member to get advice and they have a wealth of expertise and knowledge of all of this sort of thing. Don't know why I didnt think of this yesterday! I spoke to them when DD was first ill and they were very, very helpful.
Also, meant to answer your query about temperature control yesterday (clearly losing brain cells by the minute). DD was very badly affected. Would sit under her 13.5 tog duvet teeth chattering while everyone else was sweltering in a t shirt. Interestingly this is the first year, since before she was ill, that her temperature seems to be more normal and she has just told me she will need some more summer pyjamas with short sleeves! Hope you have a good day.

Thanks chocaholic for the info. I have loads to sort out before Wednesday now, but at least I can get myself more prepared rather than just being resigned to anything they come up with.

I really hope you have all had a fantastic week and all goes well in the morning with school! I will be thinking of you.

Thanks to you all for all the encouragement and support. Really appreciated. I had thought I was the only one out there going through all this! So pleased to have been told about you lot!

Hi Pos Attitude - and everyone else.
Cannot answer your question for sure as have not got code of practice here and also, think every LA has their own code and Statementing form, so Parent Partnership, the AYME helpline or the statementing officer at the LA would be best to ask. Having said that, a school has to implement what is on a statement. Is it possible that your dd's school were very anxious about what you might be asking for - e.g. more support that would cost them? They would be anxious to avoid anything going on the statement that would be challenging for them to deliver. That might be why they were being so funny.
That guy has no right to make up rules like he has - what a cheek. Am so shocked that they would not put your calls through.
Re pushing for stuff for your dd.
I am not sure what everyone else thinks about this but when we backed right off with my dd and stopped making school an issue, then we began to see some progress - but she did have huge issues with panic.It's a bit like the fight is now within me, rather than outside - I am just having to deal with my frustration but she is making progress. Her consultant, the psychiatrist and the counsellor all said we were doing the right thing backing off as school will catch up later. To illustrate, tho my dd hardly goes to school, she is doing her gcse modular exams and will be catching up with coursework this term. She is bright, which helps, but is now down to 8 gcses. For a fairly academic girl and school, that is hard BUT is not the end of the world. You know your dd best but I just think it is worth looking at what causes her most stress at the moment and trying to eliminate that.
Massive good luck for Wed - please don't let them bully you and do not agree to anything you are not happy with. Ask for a further meeting if needed.

What an awesome post, Dwardle. Have just got back from Suffolk with 7 teenagers - thank God the weather was OK. Need a massive glass of wine, but I had to post to say how fab I think you all are.
Positive - lady with pink samsung sounds fine by me!! I also agree that your DDs school sound shocking in their pastoral care. We are all assuming it's a state school?? I would be very if I had ,had the treatment you have had. Have you gone to the governing body with this? Probably one fight too much at the moment eh?
How's your DD, Choc? Has she got over her 'stuckness'?

Re support groups. Can be a double-edged sword. I know I needed and still like to have support but my DD was adamant that she was not going to be defined by CFS/ME and didn't want anything to do with AYME for instance. I think she felt it was like looking into a pit when she saw people worse off than her - not a selfish attitude just a defensive one. I guess it depends on the sort of group.

Good luck this week everyone. Will be rooting for you on Wednesday, Positive.

yes I agree Dwardle re backing off educationally. It is hard when you have a bright child who is expected to do well. DD was anticipated to get 10As at GCSE before her illness, she was always near the top of her year. Last summer she sat 3 GCSEs in bed, in a darkened room unable to walk (we pulled her out of the 4th subject the night before knowing she couldnt cope with 2 exams in 1 day). In all 3 subjects she got As which made us very proud. This year she is doing 1 more GCSE and hopes to start Maths A Level in September. What I am trying to say is that education at the prescribed times and in the prescribed way can be made up on. It is not that important in the over all scheme of things to attain so many GCSEs at 16 and A Levels at 18. Lots of students going to uni these days have done other stuff first and cover a wide range of ages. Our children will get where they want to go, it may just take them a bit longer to get there. One thing I am very grateful for is that we are out the statutory education loop. That gets rid of masses of pressure imo. Good luck Positive for Wednesday.

Here, here, choc!!!

Hi all,

How did school go yesterday? Hope all was good. Thinking of you this morning too.

Definitely agree about the pressure of school. When she stopped going to school in November last year it was such a weight off all round. Now we are just keeping the home tutor really to keep her "in the system" before facing "the big wide world". Not sure if it is fortunate or more unfortunate that DD has really struggled all through school. - no high expectations to live up to, but on the other hand life will probably now be more of a struggle for her for longer even when her health has improved. I have decided to see what the authority and school want, but make sure that things are recorded properly so that WHEN DD is ready (not when school think she is ready!), whether in 1, 2,or 3 years time we can get the support she needs from different places other than school to help her prepare for work/life in a practical way - she has always wanted to help special needs children in some capacity as she says she would understand their frustrations.
Thank you so much for all the input. Really appreciated and I feel far more relaxed about tomorrow.

Enjoy the sun everyone! I was relaxing with a good book in sweltering heat yesterday in the garden while DD was curled up with a fluffy blanket in a semi dark room asking for the heating to be turned on!!! I told her I was enjoying the best and cheapest heating available! Long may it last - the sun I mean not anything else!!

Good luck tomorrow - you will be fine!
Let us know how you get on.
Hi to everyone. Nickschick - have not heard from you for ages. How are you? - and sam.
Am frazzled as it's one thing knowing what you should do but another when you just want your dd to try a bit of school and she is too tired but is quite lively at 6pm! I think I would have to make her go to bed at 7pm to get her looking her best at school time - she would have to get up at 4 or 5am to give her enough time to come round!Ha ha.

Hi Positive hope the meeting went well.

Hi all,
Thought I had posted yesterday, but for some reason it has not shown up, so trying again.
The best meeting since all this began! Thanks for all the encouragement. Have to say that having the consultant sat next to me was genius. The suitably horrified look she gave when it was suggested that DD SHOULD be doing 500% more than she is managing now was a classic! This turned the meeting around and the tuition centre head has even showed a sense of humour that she had kept very well hidden in the past. I even plucked up the courage to be honest and say that there was NO WAY DD would be attending the school ever again, even if she makes a miraculous recovery. I put it as diplomatically as I could, but the message was clear! We have had enough of their attitude and lack of sensitivity! (Yes it is state ? no way would I pay money for such attitudes!) The SENCO from the school was quiet, but the outcome was all good. Pressure off all round and I have been assured that what I was requesting as an ideal IS a possibility. So pleased! Pressure is off. They agreed that it's not expected that DD will be able to do any formal qualificaions, buts that's fine, cos when she gets better we will find her something suitable at that point. Don?t know what else to say, other than I am SO relieved! I won?t dread the next one now!

I really hope that school has been going ok with yours and stress levels are reducing as the sun shines!

Hi Positive!
I'm so glad the meeting went well! What a relief for you all. Have a great weekend....

How's everyone else?? Would be good to hear how it's all going.

My lot have all had exams this week. DD has had 3 days of end of year exams. I was so nervous that, that may be the end of her recovery but am pleased to report that although she's very tired (in a 'normal' way as she likes to put it!!)she has coped very well. I'm so proud of the fact that she has been so resilient under extra pressure - she has had to teach herself from scratch some of the topics tested. She is also resigned to the fact that her marks will probably be lower as she has missed so much - but is fine with it and believe me when I say that, that is a breakthrough!!
I suppose what I'm trying to say is that learning is a life long thing. So much of formal lesson time is wasted just through orgainising 30 kids etc that our children will come through will the little they can do. I'm a firm believer in personality being more vital than academic qualifications in life and work anyway.

Have a great weekend and keep posting everyone

Hi All - glad the meeting went well Positive.
Optimistic - glad DD coped well with her exams. I totally agree with what you say - so much of the time at school is wasted (teacher getting kids to pay attention, messing around, moving between lessons, packing up, getting things out. Personally I reckon a far smaller amount of 1 to 1 tutoring is worth several days of school. Of course, school is not only about academic things and the social side is hugely important which is where my DD has missed out so much. She sat the 1st part of her Chemistry GCSE yesterday, was very tired afterwards but it seemed to go OK.
Have a good weekend everyone!

Thanks for that. Lovely post from you optimistic. I totally agree about the personality. We ahve always said that our DD would go far because of her personality and dispite everything she has to put up with (dyslexia, dyspraxia) and that was before ME. She certainly seems to have been given extra doses of personality to help her cope in life.

She went out yesterday and sat on a bench with a friend for a while for a chat. First time out in public for months! I was like a cat on a hot tin roof and could not sit down all the time she was out! So pleased that she felt confident enough to do it though. We had to help her to the bench before her friend arrived and collect her as soon as friend had left, so that she was not seen attempting to walk, but this was a huge step for her in so many ways! Not too much payback yet, but we shall watch and see over the next few days. So pleased for her. Little things now mean so much.

have a good weekend and keep posting. Hope school/exams continue to go well.

Hi nickschick, how are things with you? Hope you are ok.

Positive that is so good to hear. Your DD has improved hugely, considering she could barely get out of bed when you first started posting. I am so pleased for you all and well done at school

Not such good news here, DD has relapsed this week and has been ill since Tuesday. She suddenly felt light headed and went to bed, slept badly and woke up feeling bad on Wednesday. Her symptoms are not so severe as in the past but she is not at school. It is quite shocking to be back in this position and I now think I have to seriously look at Lightning for her. She has to be persuaded that it will work for her and I will let you know how things go. She was on top of the world before this and it really is hard to believe she is ill again. We have also emailed her therapist and await his response.

So sorry to hear about your DD, 21again. Really feel for you.
Keep posting about the lightning. I have yet to be totally convinced, I know others have found it a brilliant way forward. I am not totally negative, but I suppose I like to have a theory and know WHY things work and HOW. Its good to keep all avenues open though and good luck with getting DD on side! That would be my biggest hurdle too!
A bit of payback last night, here, but not too bad so far! I feel a bit as if I am tempting fate to feel that we may have reached the bottom and on our way back to health again. Too many times I have felt this way, only to be knocked down again, but one time we won't be, so hopefully this is the time!
Big hugs to you!