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!

Good morning all. Rubbish night sleep with thunderstorms, so feeling a bit jaded this morning!

21 - I am sorry your dd has a throat infection. I hope she picks up quickly and keeps improving. Glad the D of E was good. Should sleep for a week now - or be dead grumpy for a week through lack of sleep!!!(mine would be anyway)

Optimistic - SOOOOO good to hear that it went well at GOSH. Pleased that you have come so far with the recovery. Don't really want to ask the question, but am compelled to. If a mild/moderate takes 2 - 3 years, what about a moderate/severely affected? I just want to be an oestrich really and not know, but DH wanted me to ask you.
Now get on and do those reports! A* all round would do and keep everyone happy????

Hi Katsh, hope the wading through this thread is going well. When I did it I was up til 2am reading! The best novel ever! I did, and still do get confused who was who and which dc belonged to who etc. I was the "Newby" before you posted, but have felt so supported by this thread. In a nutshell, my DD had glandular fever a year ago, very mildly and we didn't know that was what it was at the time. Recovered well, but when she returned to school after the holiday in September we knew straightaway that things were not right. First visit to GP she was diagnosed with CFS/ME. She went downhill quickly and was severely affected until just a few weeks ago and we seem to be on the road to recovery now. Happy reading, and enjoy a bit of pampering for yourself too from you in-laws.

If any of you is a psychopath, could I ask you very nicely to stay at home on 11th? I am a bit of a London virgin, yes a real country bumpkin, me!! The idea of the underground is sending me into panic already and I certainly could not cope with anything that I warn my teenagers about! I promise not to come along in my wellies and flat cap, but I will be a nervous wreck. I haven't got a clue how to get anywhere, so will leave plenty of time and will either be waiting for hours, or late! - No I will try my best.
Hi Debbie sorry dwardle, didn't want to miss you out.
Also Hi to nickschick and everyone else.

Oh yes the reason I asked you that question about your religious persuasions was because I wanted to tell you what happened here, but did not want you all to think I was wierd! Well, no more weird than you do already!
DD was visited on June 8th by a Christian healer.(it also happened to be her 15th birthday) DD had been unable to do anything for months. She did not want me in the room while this guy was here, but afterwards she said that he prayed in tongues and she was slightly freaked by it all. - she had wanted him to come, we would never done this against her wishes! Anyway her reaction that day was that it had all been a bit wierd, not a bad weird, but expectations I have to admit were low. However the next day when I was at work she sent me a text which simply said "I can walk". From that day she has walked everyday, although when tired she may result to crawling by the evening. She has not needed to be fed, either. I really don't think that it was a co-incidence as she had shown no real signs of much recovery before that day!
I just wanted to share this with you.

Now I feel really emabarrassed so after this mammoth post I am off to work.
Have a good day and hugs to you all.

Oh gosh. Am working from home to plough through reports so can't post much now but just to say you are all wonderful and I am not a psychopath and the stuff about GOSH was IMMENSLY useful and don't be embarrassed Posatt. Love to everyone

I am absolutely fuming!

Advice please from you teachers, especially PLEASE!!!

Just received dd's end of year school report. I realise that teachers have to put something, but some of the things we have got put down are heartless to say the least!
DD has only been doing Maths and English since November, everything else was droppped, but we still seem to have reports from all subjects. Some have been sympathetic and just put "No Longer studying this subject" but others are bizarre!

"She has made disappointing progress this year"
"Very important to increase attandance to 95% for her to acheive target grades"
"Attendance at ALL extra revision lessons is vital"
"She never does the homework set"
"Should make extra effort to catch up through the summer" (this one PE studies!!)
"Contributes well to class discussion" (very hard from 2 miles away!)
"She must follow all advice given and put in extra work to begin to make progress"
"She needs to try harder and increase effort"

I have just realised that I have not been informed of the parents' evening, which I had thought I had to be invited to as a parent of a pupil on school role. Am I right? Get the feeling they want to keep me at arms length.

Should I ask to go to the parents evening and tell them what I think? They seem to have totally ignored the fact that DD is ill and has not been able to get into school at all for most of year 10. Or perhaps I am over-reacting and I should just shut-up and let them get on with it. What do you think?
HELP!!

Oh Positive I am so sorry school are so insensitive. I don't understand why they do this at all and I think I would have been in tears if we had been sent something like it. It is just so frustrating, and after all you have been through you must feel like you are banging your head against a brick wall. Obviously the teachers here will give you some good hints but you will have to settle for a (((hug))) from me.

I know that we are very lucky with our school and DDs reports have been very encouraging and realistic but even so she was given comments for a subject she never attended. They just don't get it do they?

On the subject of the healer, I don't think it matters what anyone thinks, obviously it worked for your DD and perhaps gave her the confidence she needed to kick-start this recovery.

Take care ....

Positive - I am funing for you! No wonder people think schools are c**p.
I would write a completely stinky letter to head and copy in chair of govs., just to make myself feel better. We had a tiny bit of this last year from a couple of teachers who didn't seem to be in the loop. I WAS in tears and actually couldn't stop crying at parents' eve. Seeing all the bloody, healthy girls too aargh! I'm sure they must have thought I was a head case but they certainly jumped to it. Sometimes in secondary, the head just doesn't seem to know what her senior management team are doing, but you have been treated appallingly imo....

Dwardle - where are you? Positive needs you!

As far as healing concerned, I think that if you believe in something it does work. I know of a mum who has had terminal cancer for about 7 years now and has healing regularly. Whatever floats your boat and works for you...
Unfortunately the consultant didn't say how long a more severe case would take as it wasn't pertinent for us I suppose. He just said that no-one knows why some chn react like this to a virus. He thinks that puberty, allergies, elements of OCD, high achievers, stress etc etc seem to be common factors. He was very open though to everything we had done and gave an impression that he gets frusatrated with people who think it is purely physical and it's just incompetent doctors who can't find what it is and how to cure it. He said that some in this world are looking for a needle in a haystack!
I would go along with that. As I've said before it doesn't matter what caused it, the key is to find a clutch of treatments that help! He was also very pro 'talking therapies' and feels that, that is also key.

Again I hope this helps.

Positive - write a stroppy letter, sleep on it and then see on Monday what to do with it. I just feel you should jump up and down so that this school doesn't get away with such shoddiness. Let's hope you get the place at the centre.

fuming, not funing!!

21again - I hope your DD is feeling better today.

Thank you for your encourging posts. If fuNing is one step up from fuMing, I think I am up to fuZing!
I have gone from being mildy hysterical and laughing inanely, to being really cross, to now just down-right FUZING! Yes, I embarrassed myself with having to run out of parents evening in November after being told I was not allowed to mention that DD was ill (the same week as we were told that GP and Paed feared it was a brain tumour, but staff were not allowed to be told that DD was expected to start having fits at any time - huge health & safety arguement!) Sensitivity of an ant, a dead ant with its brain crushed out! I want to calmly ask to go to parents evening and face these teachers and ask them what they think they are up to. Parents evening on 8th, no letter about it yet, which I would have thought I should have had by now as the letter will need to be returned and all the teachers sort out the timings to see 400 kids parents. I am sure I have not been invited deliberately. Trying to find out if I an entitled to "demand" to be able to attend.
I have been successful in not getting stressed about education and backing off from arguing with the school by just letting them get on with it, but this has been so demoralising. Not shown DD. DOn't want to upset her. I will have to handle with care! The only subject she had no comment at all for was Maths. Her favourite subject and the one she has done most work on. And they could not be bothered to acknowledge she had done anything!

Sorry about this seething rant. I need a large bottle glass of wine!!

Was doing reports
Right.
I will write this before I swig my huge glass of pink stuff - now done approx 160 reorts so I need it.
Am utterly horrified for you but it does happen. My dd has just got 'cause for concern' for her attitude for maths. Difference is that I communicate regularly with her form tutor so have just sent a 'measured' email about it! That is a supportive school and your dd's is NOT.
My initial reaction is that you should invoke the school's complaints procedure and make a formal complaint. I really like OM's suggestion to write to Head and copy to chair of govs. - if I was being really grumpy, I would have an attempt at copying it to parent govs too - you should be able to find out who they are off the LA website.Try the school directory and look uo your school. The complaints procedure may be on their website but they must give it you if you ask. Sadly, complaining to the LA will get you nowhere - they will refer you back to the school's complaints policy! If you send it, a letter with accompanying docs would probably be needed. Have you thought about talking to Parent Partnership again? Are they any good?
Will ask a secondary head RL mate what would get you into the Head! Is much easier at Primary.
DH is a secondary teacher and he says that it sounds like head of year or pastoral have done a shockingly bad job of passing info on so he wonders whether direct letters to each teacher pointing out how ill she is might be worthwhile. They may not have been given any info (Though why they have not asked is beyond me) Quite frankly, I think the school stinks.
Yes - you should know about parents eve - they really are shocking, aren't they.You have evry right to be there. I do wonder if the Head knows about this. I actually think you should make a formal request for an appointment and don't be fobbed off. It depends on the gatekeepers for the Head. Again, you could write to ask for an urgent appointment.
Have been rereading the posts and the more I read them, the crosser I am on your behalf. It is really quite outrageous and so insensitive.
Can I think about this overnight - sometimes inspiration comes late!
DD has gone out all dolled up to the dinner - hope she is ok as she has not had a good week but she was v excited which was lovely!
Think it is gd idea not to show yr dd report until you have a plan. You could ask yr Head what they think you should say to your dd. Sometimes, I am so horrified about schools. They are not all like this.
What is yr DH's take on this? What would happen if he rang school? Would they make connection and realise he is your dd's dad? It sounds like they would not even have the wit to do that. NOT suggesting you are not capable - you sound wonderfully capable. Just wondering if the office staff have been told to fend you off?
Am sending you huge cyber hugs - is there a smiley for that. Is really c**p for you but one day their crass insensitivity will catch up with them - I really believe that.

I am now crying even more, cos you are being so nice about it. Thank you. Too much wine to think sensibly now, thoughts heading more towards murder than letters, but I will behave and think more rationally in the morning.

Thank you all SOOOOOOO much!! Boo Hoo!!! You are all lovely!!!!!!

Didn't mean to be selfish, I really hope your dd has a fantastic evening and feels good about doing it.
160 reports done! Well done! How many more or is that it?

Whoop,whoop. CFS/ME mums r us!!!

Dwardle - will you please stop showing off about your reports or I'll call you Debbie.

Please nooooo!

I am so pleased, DH has agreed to come with me to chat to our lightning practitioner (without DD at this stage), we will be going in July and can ask him all sorts of questions and maybe then DD can go through the process in the holidays. Her throat is much better today and I am hopeful that she will be back in school tomorrow.

Dwardle and Optimistic I knew you yould have good advice for Positive, I think it is so great that we have each other for support here, and Positive I hope you are feeling better about things today. Dwardle I hope DD had a good time on Friday night, looking farward to hearing about it.

Katsh hope the building work is going OK and that the in-laws are looking after you all.

Hi everyone
dd had a great time on Fri night and seemed non the worse for wear! We have just emailed an LP practitioner so at a very similar stage to you, 21again.So pleased you are making progress with this. Glad your dd is feeling better.My DH has been won over and seems more interested.
I think OM's comments post GOSH were incredibly helpful in this so huge thanks OM
Was thinking about you, Positiveattiutude, and the awful school.
What do you want for your dd? Do you want her to go back there? If yes, do you want an apology or a recognition that she has a real illness and if she is not at school it is because she is ill? or both?
If you don't want her to go back, then also, what do you want to achieve? Do you want to make them suffer, or just get them so see that they have been at best thoughtless, insensituive and the absolute opposite of child centred (not sure if secondaries know that phrase!!!!!!!)
Sorting out what you want to achieve would really help to decide the best thing to do and the way to put a letter or complaint together.
It may be that you want to tell the school that you cannot share you dd's report with her because of the emotional upset it would cause her just when she is beginning to feel better. Is that what they wanted? You could ask them what they thought their comments would achieve! It does come across that they know NOTHING about cfs!
I always worry that peolpe think dd could do x, y or z if she really wanted to. We know it is just not that simple but that attitude came over loud and clear in the report comments.
Please let me know if this is helpful - do not want to overstep the mark here.

So pleased for you and for your DD Dwardle, she has made huge progress, it is good to read . Will be interested to hear how you get on re LP. I am convinced that it is the way to go, although our DD has improved so well on her own and with CBT. It seems to me that LP gives the patient much more specific instructions and I think my DD will find it easier to carry out and will equip her well for year 10.

Oh please keep posting about LP and let me into all your thoughts as you go through this. I discussed it with dd?s paed last week and I am becoming less sceptical. Maybe I would no longer be the lemon sucker!!! At the moment our dd is really making huge progress and I feel while things are going along at this pace we will carry on as we are going, BUT we are very aware that the autumn is the danger time for a downward turn, so maybe we will seriously look into it then, so I will be very interested to hear all your experiences.

So pleased the sleepover went well, dwardle.

You are definitely not overstepping the mark with your comments. They have been really helpful and think about what we do want and how the best way to go about it. Ideally, we do not want DD to return there. I think the stress of it all, if DD is treated the same as she was when she was first ill, would just put her straight back. I have no confidence that anything will be different this time round. I would really need huge reassurances and change of attitudes for us to consider her returning there. Our ideal would be for her to go to the tuition centre, but we have been told that at the moment there is no other year 11 pupils, which means there would not be a year 11 class, so our other option would be to continue with the home tutor, BUT with that DD would have no interaction with others and we feel that is probably more important for her than the actual education. (sorry if you disagree).
An apology would be good, but I wont hold my breath waiting as we have never had a hint of an apology in the past when we have explained how their insensitivity has made DD feel. We get excuses and anything that cannot be excused is ignored. I feel I would need to really sit down with some of the staff and test the water as to how sensitive they are going to be and how much understanding we could expect. I have actually typed out a draft letter, but already I have ideas on a few changes I want to make. I am struggling though as I feel I just comes across as a ranting parent, which is what I am always made to feel like.
Any tips would be greatly received!! The horrible side of me wants to make them suffer terribly, but I don?t feel that would really achieve much. I definitely want them to understand how upsetting this has been and more importantly how things are going to have to change. They are going to HAVE to work WITH me, not against me all the time. How can I get them to understand this and to get across that I am not against them and want nothing more than to work with them purely for DD?s benefit.
Sorry for long post yet again. Have a good week and I hope all your DC?s manage school.

Hi 21again - I really agree with you about CBT and LP - dd has only had sessions every 2-3 weeks and they are quite gentle. I think she is finally ready for a bit more and I so want her to be ready for y11 if possible. Really pleased for your dd too - is she looking forward to school?
How is everyone this evening?

Just seen your post, pos att. More to think about but I totally agree that friendships are more important than the actual education . Food for thought and this is NOT about boasting about my dd as I am not but she pointed out to us this eve that her projected gcse grades and those that she is assessed as working at at moment, after missing HUGE amounts of school, are stiil better than her friend's, who has been there all the time.(and who is a BRIGHT, gorgeous girl who I love) My point is that yes school is important but it is not the only way to get there. I think other people's dcs have made progress whilst not actually at school but without friends and kindness and nurture and encouragement, what is life?
Is there a third way??? Another school?
What is the head like? I still think that is important as the Head sets the tone for the school. Where is their emotional intelligence?

Head is a power crazed woman hating idiot!! Nicest possible way of saying what I think of him. I have absolutely nothing positive to say about him. Emotional intelligence of the chair I am sat on! Avoiding him like the plague and going to the chairman of governors.
There is the possibility of another school, but we feel that would be our final resort, as we chose the school she is at for their special needs above the alternative school, where DD would probably not get the best special needs help that she needs, if you unerstand me.
Teenagers want computer now, so will catch up later xxx

Did you say yr dd has a statement?

Hi all - so pleased you are all so positive about the LP. I feel very responsible for you all and hope that you all have the success we have had. I kept telling myself something that our practitioner said ' why would your DD NOT be in the 85 per cent for whom this is successful?' and it became my mantra because believe you me I was full of trepidation mixed with huge excitement as you are now...

Positive - I totally agree with Dwardle. Friendships are far, far more important than academic achievement. As our Human Givens counsellor said when I said that health was so vital..She said'Is it? or is it the quality of your realtionships?' and I have remembered that line ever since.

I don't want to boast either... but I will.... DD like Dwardle's has come top of her class in history and missed most of it. It strikes me that a lot of lesson time is wasted and that one to one a child can learn so much in a short time. We just used a GCSE revision guide and hey presto!!!

Positive - Have you heard of 'Every Child Matters'? Just look it up and quote it to your pr**k oif a head teacher. Just write down what you wrote on here and say it again to your school. It was powerful stuff! Ask for a meeting and see what happens.You might like to print off the NICE guidelines for CFS/ME as well while you're at it!!

Hope you all have a great week!

Hear hear,optimisticmumma

Hi all,

Dwardle, yes she does have a statement, although this seems to have been all forgotten since she has been ill. We brought a review forward when she was diagnosed so that we would be able to discuss everything properly, but were told not to mention her illness as it was not relevant. We were told that the way she would learn would not change just because she was ill. If they said this now I think I would argue, but then we were a bit bemused by it all.

Optimistic - I love the idea of going to the head and calling him a power crazed, woman hating idiot!! Or perhaps you meant other comments!!

Letter is written and will go to the chairman of governors, We will see what happens from there and perhaps ask for a meeting, if I am feeling brave enough. Will read "Every child Matters" info.

thank you so much for your support. You have made me feel empowered to stand up for DD and to face the school again, with slightly shaking knees, but I had scuttled away from any confrontation after being fed up of their attitude. I now feel stronger to start again.

Have a good week all of you.

Optimistic WOW!!! Your DD is a star . I would love to have seen her teacher's face, you are right about the amount of time that must be wasted in schools. She must be feeling so good right now and I am so pleased for you all.

DD is back at school and hopefully coping OK. Will keep you all informed about the LP progress.