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!

At the risk of being a complete bore, Solo, have you tried Lightning Process?
It was a total miracle for my DD. I won't go on as I know opinions can be divided but it was like flicking a switch for my DD.
Worth a thought??

My friend told me about this and I was very up for it until I saw the cost...I don't have £6 in my purse, let alone £600 for the course...if I ever get enough money,I'll certainly be doing it I would so love to be 'normal' again optimistic

It is a crying shame that LP is not on the NHS as it has "flicked my switch" too Solo.

(love that expression optimistic and is just how it was for me although for a while I think I was on a dimmer switch!)

Can you tell me what it entails exactly?

Solo - sorry it's so expensive for you to do. It's very difficult to describe and to do so can give people pre-conceived ideas which are then obstacles to them completing the course successfully but basically it is a three day training programme where you use lots of different techniques to brain train yourself away from symptom spotting etc. It takes practice and I do think teenagers access this sort of thing more easily because they are not yet following set patterns in thinking and behaviour and are in the 'teaching/learning' environment still.
If you can be bothered to scroll back through the pages to last March my DDs LP experience is detailed (In real time!) there.

Suffice to say - if there is way you can do it in the future I absolutely recommend it. As they say it has an 85% success rate so why not?

I am really hoping that you can find a way....xx

Hi everyone - really interested to read all the posts - congrats re the baby - what lovely news,EricaMaye
Yes - you should definitely appeal, Katsh - and you should always do form on worst case day. Friend works for CAB and they help with forms like that all the time. I have had pupils refused and then they have succeeded on appeal.Did school write on it? Do you know what they wrote? Did you get any backing info from yr doctors?
Solo - my dd did LP as well and whilst she still has a few issues, it is brilliant. Am so sorry it is not on NHS.
dd did 4 days then did not get in on friday cos she fell over in the snow! She then nearly set fire to the house and had to ring the fire brigade! All was okay in the end and we now have 2 lovely new smoke alarms!!!

Solo - if you go to page 6 of this thread it explains LP a bit better....

Dwardle - welldone to your DD. Shame about nearly setting the house on fire

Ericamaye - sorry not to have offered my congrats! Well done but take care to look after yourself properly and take all the help you can get!

thank you! I wish it was on the NHS too!.

I have read a few posts on page 6, but I can't take in loads at once(I know you know what I mean), so I've stopped at 14:21 and will return later.

It is so true about forgetting what it's like to be well or normal ...you certainly just 'know' the illness after such a long time...I certainly 'wasn't going to let it beat me' in the first 3 years of being in the fog and for many years beyond that, I lived in the past...'I used to be able to...'. It took a very long time to stop doing that ~ until all I could remember was feeling ill.

Sadly, I really don't have any way to raise the money for this type of treatment, so I'll just have to live with ituntil it goes on it's own I guess .
I am very glad it's helped those people who have done the LP though...it's always good news

Hi everyone,

Hope everyone is doing well and getting back to some sort of "normaility" after the snow and holidays.

DD has crashed a little this week. Went to education unit for the first time for a month on Wednesday. First day of the increase to one and a half hours. Unfortunately they had an art "music" class. She said that as soon as she heard the music her brain switched to sleep mode and she fell asleep! She always listens to music when she is really tired. So first day was not a huge success, but try again next week!

We have a paed appointment on Monday. Mrs CBT has not been in touch since our "discussion" about whether we were prepared to listen to her and I said "no". Not sure whether that's the end of that, hope so!!!!!

Have a good weekend everyone.

Hi quick question for anyone out there tonight! We are having a meeting with school tomorrow which will be our first with the education welfare officer and headmaster ( previously SENCO and class teacher). DD has not been in school at all since 23rd November, and in the 2 mths prior to that managed a max. of 3 hrs each week spread over 3 mornings. She was pulled from school on the advice of her doctors, and we are seeing improvement since that time. I think that we are going in order to discuss how her education can be continued, and my understanding is that we should be getting some sort of home support for her. Is that right? Is she "entitled" to anything, or is it completely dependent on the resources of the LEA? We think that she would now be able to engage with some home learning, which was not the situation before Christmas. I'd be very grateful for any info/ wisdom. Thank you .

Hi Katsch.
I'm slightly hazy on all this but it is my understanding that your DD is entitled to some home tuition as she can't access school and you haven't deregistered her.
Although my Dd was at secondary school we got to a stage where we had to 'apply' for the home tuition. I think your DD has to go down the 'special needs' route in order for those needs to be met. Forms need to be filled out so that her needs can be assessed. I think the funding is now through school itself. (Am pretty sure it's now part of their budget apart from funding for the first 'statemented' child in each school.
Look up 'Every Child Matters' on internet. It is the multiagency document that may have some useful stuff in it.
Don't worry about your meeting. Ask the question: is my DD entitled to some provision? The school are sure to be 'on your side' especially at the primary stage. I'm sure they will want to do all they can for your DD.
Good luck. I'm sorry that this is a bit vague but hopefully Dwardle (primary head) will be along...

Thanks very much optimistic. I will look for that document. Hope things are going well for you these days.

Hi Katsh and all. I think you are entitled to 5 hours a week from when she has been out of school for 14 (or 15) working days. You therefore qualify for that. In our area it is called "Hospital and Home Education" but varies a bit area to area. If you search on your local authority website you hopefully will find something. The school usually has to fill in the paperwork and apply. Then you should hear from the supervisor and it will then be down to the availability of tutors, although I think this will be less of a problem at primary level than secondary.

Hi
Not much to add to the excellent advice already given except to say that if you are remotely concerned, don't agree to anything tomorrow. There is also an organisation called Parent Partnership that exists to support and advise if needed.
Do not think you need a statement for home tuition.
Try not to be too worried about the EWO involvement - they can be very helpful - but do take along all your correspondence from paed - I assume you get letters writing up each appointment.
Very good luck tomorrow, Katsh.
How did you get on at paed, PAO?
Things here are up and down. DD is now 20% of the way into 6th form having got a 'b' at gcse english lang.She had a glowing parents eve - amazed staff even knew who she was, she's there so rarely, but she is on track in all subjects, even maths.Hoped this welcome boost would remove more stress but she is not great today. LP practitioner SO helpful but we are not quite there. Oh well.
How are you all?

Thanks choc and dwardle. I've found the DFES document about education for children with medical needs ( thanks for the document suggestion optimistic) and have dug out relevant letters. Thank you for your information and reassurance. I am feeling a bit more calm about it all now I have to say it's great to be at a point where I think dd could engage with some home education. She is definitely better than she was back in November / early December. I've a busy morning - dd1 had hydrotherapy at 8.30am for nasty chronic nerve disease that she has developed , 9.30am sees me at school for the meeting, and 11am is dd2's 3 mthly appointment with her paediatrician ! I think I may treat myself and dd2 to lunch out if she's up to it . I will let you know how the meeting goes.

Sorry Dwardle , meant to say, glad that parents evening was so positive but I'm sorry that today hasn't been such a good day. I hope tomorrow is better. Choc - good to hear from you . How are things going for your dd?

Katsh - So glad that your DD has improved slightly. If possible, can you print off the "Access to education for children with medical needs" document and take it with you? Glad you have found it as it covers everything. I am sure the school will try their very best for you, but basically they HAVE to provide education (yes, 5 hours a week) AYME are very good with all the legal stuff involved with this, in case you need to have any help. I realise this is all to late probably for today, but as Dwardle says, don't feel pressured to agree with anything. (I wish I had listened to this advise 18 months ago!!) Our home tutor was fantastic and she totally could "read" when DD needed "jollying along", or just leaving as she just could not cope with anything. The great thing DD liked was that she did not even have to use energy to get dressed when she was coming. She would sit in PJs. DD was only doing 10 mins at a time at her worst, so we found them very flexible and understanding. I hope you do too!

Hospital appointment went well, thanks Dwardle. THe paed, yet again, was able to get everything into percpective. SHe is great at reminding us how far DD has come and not how far we have to go.
Just plodding along here, no real improvement.
Sorry that your DD is struggling still, too, Dwardle. But good news about all her school work. It is so frustrating to take so long, isn't it? And I find it hard that sometimes DD appears to be so well, then so .....not! If she is seen by anyone when she is well, I have the "Oh I saw DD and she is so well now. Isn't it amazing.you must be so pleased" and i find it so hard, cos they then don't see her unable to stand without leaning and just struggling to stay awake for the next few days. I know people mean well and i don't mean to be ungrateful for their encouragement. The life of a hermit yet again seems appealing.

Now, I feel all maudling, so will go and make a mountain of sandwiches and chivvy reluctant teenagers out of bed! - I leave DD3 for her carer to deal with! One less arguement for me!

Have a good day everyone and I hope your meeting is productive Katsh.

Well I'm glad to report that today was the first meeting re dd when I haven't felt that we are battling to get help. The EWO, Home learning team, nurse specialist were all absolutely on her side, and they came up with a plan. From end of Feb she will have a "Learning Mentor" who will come to the house. They want to start with 3 times per week - I think that may be too much, but I'm delighted that they will give her that much if she's up to it. After they have conducted a "Health & Safety Assessment" of our house ( must remember to dismantle all booby traps ) the mentor will come to meet dd and we'll go from there. Dh came with me and it really made a difference having him there. I think it's less easy for a school to dismiss 2 parents, including one who is dressed in a business suit and looks very unemotional, as over - anxious, than it is to add the label "anxious mother" to a woman acting alone. Followed that up with a visit to the Paediatrician who said it was the first time that she'd seen us with any news of improvement. So we're all feeling happy that dd is doing better than she was; aware that we may be balanced on a knife edge, but enjoying the up while is lasts . Anyway as always, thank you all for your help last night and today. Positive I'm right with you on the attraction of a hermit's existence. It's so much easier to exist in a bubble of immediate family and no explanations. I hope that your day has been good.

That's great Katsh, sounds very positive.
DD is doing pretty well atm. We had a houseful of 20 on Saturday night and she was fine, just a bit tired on Sunday (but then so was I!). Last night we went out for a meal with some relatives over from France and again today she is OK. The downside is the more she can do, the more she wants to do ..so really it's a more advanced form of pacing than the one we used to do when she was really ill

Am so delighted that yr meeting went so well Katsh - that is how things should be and it is great that you are getting support.

You all made me laugh out loud re hermit's existence - Oh yes, how I agree! I have certain well meaning friends who say "and how is dd" with grave concerned look on face - probably just after reeling off long list of achievements of their dcs - so I just reply "oh up and down" and change the subject rapidly!

Good news re your dd too, choc. Keep up the positive news everyone. My paed was like that too - good at pointing out steps forward. She even read out notes from a year ago to us! Wow - what a difference.

Delighted here too katsch. This thread is like a 999 call! It goes quiet but when there's an emergency everyone rallies round!! very reassuring!
Hi to everyone else...

Glad it was all good Katsh. Hope the week has continued well.

Hi to everyone else, too. I hope you are all coping with DDs.

Nothing to report here, just plodding on......

Have a good weekend.

PS what happens when we get to 1000 posts. Don't we need to think about starting a new thread so that we don't lose everyone? Would you like me to start one, but I don't want to stand on anyones toes.

Oh forgot to add that Mrs CBT phoned this week. We had another "you are not going to listen to me are you?" conversations to which I simply said "NO". I think the "relationship" between us has died a death. She said she would phone again in a month's time. I am hoping that will be the last! (I do feel really mean though!!!)

I have just lost my posts - twice!! I cannot think how I managed that but now have to give up computer. Will try to post properly later but glad to be reading of improvements .

Why does a message disappear if you go back a page to check something? Never mind I will try again .

Positive - I totally understand the frustration when friends think DD is well - we had that several times. Nevertheless, your DD is so much better than she was and you need to remember that. Unfortunately recovery is slow but it is happening. We used to refer to DD's diary in order to get symptoms into perspective to see that she really was improving. Take heart - she is getting there .

Dwardle - Your DD's English result is fantastic, you must be very proud of her. To have achieved what she has in the face of so much adversity is just brilliant. I think that all our DCs have to put in so much extra effort and have had to learn to deal with so much more than most.

Choc - it is so good to hear that your DD is also so much better. Is she still doing the Perrins technique? She is obviously feeling good enough to want to do so much more.

Katsh - It is great that things are improving for you all as well and that at last you are getting the support you need.

DD is still well and got a B for the Maths module that she took last year. She is going to get some help at school to catch up on what she missed in year 9 so that she can retake later on (she very much wants to do this). She really is better, although we do still keep a close eye on her and try to find ways of teaching her to deal with stressful situations as they arise. She does seem to get stressed out easily - but then- what teenager doesn't? On the whole she is coping well with life and certainly never refers to being ill, that chapter of her life is closed as far as she is concerned.

Optimistic - Hi , hope all is well .