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!

21 again - what great news. Am so pleased for you and esp your dd and it gives me hope. dd is okay but always has a headache.
Glad you have dumped Mrs CBT, Pos!
Do not understand the 1000 posts - is this a Mumsnet rule? MUST NOT lose touch with you guys so - Pos - do what you have to!!!

21 - It is so encouraging that your DD is feeling so well now and sees CFS/ME as behind her. As dwardle says, its really great for us to hear that someone has come out the other side.

Dwardle - Sorry your DD is still suffering headaches. Hope this improves soon.

Apparently when a thread gets to 1000 posts it explodes is taken off or something. I will keep an eye on it and leave it a little while, but will start another one before we get to the thousand. Then I will post a link from here to the new one, so that we can all jump onto that one.

Just noticed the new faces.... Oh I think they are quite sweet. MN never ceases to amaze me!

Have a good week everyone. this will be our first week of 2 sessions of one and a half hours!!!! Whoa exciting.

Thanks Positive, I would hate to lose contact with you all, we've been through a lot together!!

Just had a phone call from school, DD not well. She did complain of a sore throat this morning and I gave her paracetamol, but apparantly there is a bug going around and a lot of them have been off. Shall pick her up about 12.30 and she can have a lazy afternoon.

Hi to everyone, hope things are OK .

Hi all, we've taken a bit of a dip here but not as bad as pre-Christmas, so hopefully will pick up soon. I got my DLA refusal reasons today, and thought I'd share with your their top comment

" (DD2) has varying levels of fatigue. It is particularly bad after excessive exercise" !!!!!!!!!!!

I just can't get her off the treadmill and she does insist on going for 5 mile runs twice a day

I don't feel I have the energy to appeal, but the inaccuracy of it is making me enraged, so perhaps I will.

Katsh I know nothing about the DLA, but knowing what I do about CF, it all seems very wrong. I can understand just how you feel but if you do have the strength to do so, then perhaps you should appeal. I am sure some of the others will have better advice for you.

DD in bed now. She has had some scrambled egg on toast and a cup of tea and is now settling for a marathon "Lord of the Rings" dvd session. She certainly doesn't seem too bad and school says they have a lot of students away at the moment. Hopefully she will be over it soon, and I have to say that now - when she gets a bug of some sort - I don't worry at all that it will be a problem for her.

Katsh - Sorry things have dipped for your DD. I tend to think tht as soon as I say that things are getting better it is as if CFS has to prove me wrong! For Months whenever I said DD was doing ok, everything went wrong within days. I hope she picks up again soon.
As for the DLA, have you contacted AYME? They were really good when we filled our form in and may be able to supply some information to back up your appeal. "Excessive excercise" It would be laughable if it wasn't so insulting!!! If getting out of bed is excessive exercise, then they would have a point. Definitely contact AYME. I could not have got through the first year of this without them.

21 - Hope your DD gets over the sore throat. I am still at the point of near paranoia about bugs. When DS was feeling unwell at the weekend I tried to keep DD in a different part of the house - Big house, so very manageable. I know I will have to get a grip sometime.

Bad day here too today. Seems like everyone is struggling. DD has struggled to stay awake today. Moving around the house has been too much for her. Oh well, always tomorrow!

Katsh - feeling a bit stroppy tonight but you MUST appeal - they turn people down all the time first time round. One of my best mates works for CAB. Shall I ask her advice? But think AYME advice is your best bet to be honest (am sure there is mumsnet speak for that but....!)
21again - sorry your dd is unwell. Ds is also not well - spectacular cough! Got commuter dr appt tomorrow - at 7.30am!!!!!
dd very mixed - she is really stuck on the what she can't do groove and is driving me mad!
POA - take care and keep smiling!
Going to lie down in a darkened room now!

I am sure I heard on radio 4 recently about a lady being turned down while having chemo for cancer and when she appealed she was told 3/4 of people appeal and then get the DLA after all! So go for it

Hi all...
Katsch - go for it! I would be furious too! It reminds me of DDS dep head who, at the age of 13, turned to DD and in the most patronising voice told her she would get a merit mark every time she got in to school at the beginning of the day - it took all my strength not to screech at the silly woman. I simply gave her the 'What it feels like to have ME' and told her to read it!!

DD is still going well here. I sometimes wobble I must admit especially when some supposed experts say that it is always with you. I DON'T AGREE. Apart from the 25% group PEOPLE WHO HAVE CFS/ME DO GET BETTER!!!!
Sorry to shout but I have to believe that as my darling D does. She just refuses to be ill any more and luckily she is at the stage where she can think like that. It would be so easy to slip though especially when there is pressure.
Take heart everyone - particularly this week when ME is so much in the news - the vast majority of people recover and our children will....

Thanks ladies. I've been in touch with AYME and they are going to send me their DLA info pack. I'm also seeing dd2's nurse tomorrow so will talk it through with her. I know you're all right and I should appeal, so it's just a case of getting my focus on it and doing it.
Optimistic - of course they will get better How can we think anything else. I am glad that your dd belives that too.
Dwardle - hope dd moves out of the rut and that ds's cough goes.
POA I hope that your dd is less exhausted today
21 - hope dd is recovering from her bug, and enjoyed Lord of the Rings !
I'm feeling a bit miserable this week but my Homestart lady is coming round later for 2 hours, so I'm planning to drag myself to the swimming pool for a brief bit of excercise and then I've arranged to pop in to a friend's for coffee. HOpefuly that will make me feel a bit more than a carer for a while. HOpe you all have a good day.

Katsh I do hope you are feeling a bit stronger. That two hour break is something you really need, and a coffee and chat will do you the world of good.

DD still not well, has had a sore throat, headache and nausea and has no energy. This is the first time she has been ill for a very long time and although the nausea has gone, she is still suffering. There are a lot of bugs around at the moment but not sure if DD is suffering any longer or worse than anyone else.

Hope everyone is having a good day .

21 - sorry that dd is still feeling rough. Hope tomorrow is better.
I had a v. good time out - homestart are great - and I made myself behave like a lawyer ( which I was ) and not a mother, and I contacted the DPW and found out all that I needed to know about appealing, and requested copies of all the reports that they relied on ( including from her GP - who hasn't seen her at all through her illness, and her teacher from September, who had her in class a few times ). I am now resolved to treat the appeal in a factual and not emotional way, and we'll see what happens.
We did have more giggles from dd2 today than I've heard in a few days, so that was good. She hasn't lost her sense of humour and has decided that the most appropriate birthday celebration for an about to be 8 yr old with CFS is a .......Pyjama party so we'll have a daytime pj party for her in a few weeks time! Hope today went ok for you all.

Katsh I am so happy to read of DD giggling, and you certainly sound in a more positive frame of mind. It is great that you are able to get out to see friends now, it has done you the world of good and I hope you can continue to do it from time to time. Good luck with the appeal.

DD is feeling better and has gone back to school today. Her friend has been off for the same length of time and with the same symptoms, which shows that DD is able to deal with illness "like a normal person" (for want of a better phrase).

Hi to everyone, have a good weekend and I hope the improvements keep coming .

Hi all
21again - glad dd is feeling better and back at school.
Katsh - well done - that is exactly the way to get your appeal through - which I am sure you will. Is very hard to divorce the emotional when it is yr own child, isn't it!
Glad you had good time out and the PJ party sounds a great idea
OM - totally agree - they DO get better - dd, though not perfect (in any way) was out partying on fri night and made it into school for some of every day last week -including an exam. What success! And success breeds success - have taken to actually noting successes with great regularity - tip acquired partly through work and dealing with v challenging children, but also thinking through LP - we actually articulate what the success was, however small- and celebrate/ praise so the focus is shifted to what we HAVE achieved - not what we haven't.You may notice, but do you spell it out, esp to dcs?
Lots for everyone to chalk up this week then.

We are seeing dr at CAMHS tomorrow - that should be interesting
POA - how are things? and Choc and hi to everyone else too - have been reading if not always posting. ds was off school for 4 days - argh stress - but much improved by today, thank goodness. Hope this week coming is better than last- for me, not dd!!!

Dwardle - Hope this week improves for you. Good idea about noticing the positives, not the negatives.

Katsh - PJ party idea sounds brill. Hope it all goes well and DD enjoys herself without tiring herself out too much.

I am struggling to come on here and post as I keep reading all the positive things that your DDs are able to do and we are really flagging here. Sorry, I don't mean to sound as if I am not happy for you all, I am. Just hard to take at times. I know DD will never go back to her swimming, which was her great love and pride before she was ill. She is struggling to get through each day at teh moment and is sleeping more and more again, although we are trying to keep a check on that and halt downward spiral. She ahs been out with friends once since the beginning of December. Planned a 2 hour friend visit, but could only manage less than an hour. Then absolutely flaked for a week afterwards. She is still managing the schooling, 1 1/2 hours twice a week. Paed says she is very fragile and we must be careful about pushing her too fast.

Must go DS has a swimming gala and I forgot! Got to take him NOW apparently!

PA hang on in there things will get on the up again. There is no reason why she should not get swimming again.

I couldn't even turn over in bed a few years ago but went for a jog today - she will too

Sorry to ask but is LP out of the question? I expect you have said but wading through the posts would take me all night!

Hope the swimming gala went ok.

Positive - We all understand how it feels, just post when you feel you can and know we are here for you. DD will get better but some take longer than others, she has already taken some huge steps. My DD used to be a fantastic cross country runner and has obviously had to give it up along with other things, but other opportunities come along and will do for your DD. Try not to get too down - although it is so very hard - and do take heart from the success stories.

New thread has been opened here. to keep the sanity flowing.

I've posted on the new thread!!!!!!!!

Forgot to add - ace post, Dinamum - thank you