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!

pinkpanettone - my DD has been seen by Dr Crawley and a few on here have done really well with LP.

Hi all, back from my first travels. Fantastic week away. Four days here, then off again with DD3 to visit DD1. I hope DD3 is up to the 6 hour car journey (plus boat for 1 hour!) She keeps telling me that she will sleep all the way. I know we will get payback afterwards, but on balance we feel she needs to get away for a few days and she really misses her big sister.

Only mananged 1 session at school this week, but half term now. She has gone back to being incredibly white all the time, but is still walking and eating fine.

Hope Ofsted went Ok Dwardle and you can now relax with a large glass of red and a week of stress free ahead!

Well, we've all made it to half term. Well done! Hope you all have a well deserved good half term week.

Hi all - survived the big O and glad to see half trm. dd is okay - she has been in school most of this week and finished her english coursework with As so am delighted about that. Even th she is a bit wobbly about how she feels, she is SO much better and is working now - she is using her LP techniques. Still awaiting the scan but things have calmed down.
Glad to hear from everyone hope you all have good half terms and the dreaded lurgies go away!

Dwardle - glad you survived, and brilliant news about DD. LP can certainly be used for all sorts of different symptoms, I was reading Phil Parkers site and watching some of the videos there yesterday. I really do feel it is an important tool even though our DD didn't need it.

Positive - have a great time visiting DD1, I am sure the benefit for DD3 will outweigh any problems that the journey may give.

Optimistic - enjoy your break, and I hope the weather stays reasonable.

Hi Katsh Choc and Nickschick - hope things are getting better.

We will be away from tomorrow and back next weekend. Will be thinking of you all...

I hope the silence on this thread means that you are all doing well and enjoying the half term.

Here, DD3 is terribly excited about seeing DD1 tomorrow. Actually, I think the excitement has used up all her energy and she was in bed by 8pm feeling awful! At least it will be a different bed for her to sleep in for a few nights, even if we don't manage too much else!

Dwardle - school backed down about the review date when we started asking questions about why consultant had not got an invite! Now date reset yet again and paed IS coming! Yeah, result!! - round 321 to us I do believe!

Have a good week.

Well done, PAO! Yes - success to you and very well deserved.
Things are FINE here - dd is fine about school, but when you remove it from the equation, she is totally normal now! Hmm. How are all yr dds? Finding it interesting this week - it is 1 year since she went downhill so rapidly. Going to see her counsellor tomorrow - forst time for ages.
Hope everyone is enjoying the amazing half term weather.

Hi, glad you are having good half term. We are a bit up and down here. My parents came to stay and although that enabled me to leave the house a bit dd2 has been left very exhausted. So difficult to find a balance. Grandparents left yesterday and dh is now at home for the rest of the week - hurray. DD2 is having a very quiet day today, and has first play therapy session tomorrow, so hoping that she isn't too tired for that. At least with dh home it means the other 2 can get out for some physical activity - they are hoping for a big bike ride tomorrow - making the most of this lovely weather!
Social services have come back to me to say they can't offer any respite, so I'm now hoping my DLA application ( finally completed and about to be sent off when postal strike ends) bears some fruit and we can pay for respite from it. We shall see.
Enjoy the rest of the week. PAO I hope you have a good visit with your dd.

How is everyone?

Hi all, back from a half term trip away. DD is fine although she did have a couple of dizzy spells. I think one was because she hadn't eaten properly (this has happened before), and the other because she was very tired (but normal tired).

Dwardle - how did the session with the counsellor go?

Katsh - Sorry DD is so exhausted, did she manage the play session?

Positive - looking forward to hearing about your trip to see DD1.

Optimistic - hope you have all had a good time.

Nickschick and Choc - hope to hear from you soon.

Enjoy what's left of half term and post soon.

hi all,

Glad you had a good time away 21again. Dwardle - so pleased things are good with your DD.

Katsch - Just wanted to warn you that DLA are taking ages at the moment to process applications. Ours took about 4 months, but everything is back dated, so a nice lumpsum came through which came in really useful. I hope you are successful.

Hi Choc.

We had a brilliant few days away. DD coped really well and today she has been surprisingly well. I know as soon as I type that this time tomorrow I will be moanin g about how bad she is again, but i am trying to be positive!
A little trauma while we were away when DH said that our bank account had been frozen because someone had cleaned us out of £3000! I was 350+ miles away from home with no money and no petrol! A little hairy, but I must admit the bank have been really good and after some panic phone calls they were fine. Still a bit cash less and things still being investigated, but we will get the money back before too long.

Anyway, hope you are all doing well. Keep posting.

Hi all.
Got back from Suffolk yesterday. Weather was amazing for most of the week but we all got trench foot yesterday!!!
The Optimistic household is still being struck down by the aftermath of our piggy flu. Both DS2 and I are on antibiotics now for our coughs but DD isn't too bad. She keeps getting a recurring sore throat but because we have all been so under the weather she seems relatively well!It helps that she is having a 2 week halfterm as they are moving into their brand new school building - wow! I have been so impressed with DDs resilience this term as she has been snowed under with coursework. What I find so reassuring is the way she is tackling the inevitable stress that this brings. She really does seem to take it in her stride and is demonstrating what some of you have referred to in earlier posts - an ability to apply perspective at a young age. Long may it continue....

Glad to hear that most of you have had good half terms. Katsch I am glad you have had some support and given yourself some well deserved breaks and I hope the play therapy went well. It reminded me that when I asked the LP trainer about young children that the youngest they had treated was 9 and much of the course was delivered by puppets - food for thought...
PAO about the money - my constant fear... that you had such a nice time with the 2 DDs. Hope the fallout was containable!

Hi Optimistic - glad you had a good week and hope you all shake off the remnants of the flu soon.

Positive - bad news about your money . A similar thing happened to my in-laws and it has left them very nervous about using credit cards etc. They now prefer to use cash as much as possible which of course has its own problems at times . Hope it all gets sorted quickly. How is DD now? Hope she hasn't suffered too much.

Hi to everyone else. Post soon..

Hi all
Interesting times! Esp big hug to PAO - what a nightmare.
Update on dd - she is okay - not brilliant - but okay! Saw chap at CAMHS and he suggested that her pain may have non-physical causes - which is what I suspected as nothing else has shown up positive. He said that for her to have a 'normal' day in school probably takes twice as much effort as for most people so she was doing brilliantly really. I found this v reassuring - he was very positive with and about her. I think she is ok about what he said. She just always seems to have a minor ailment - this week is a silly cough and she says her throat is sore. BUT she is not fatigued which is the big difference. Anyway, she is off to see someone else in the team when the appt comes through. And she is in school!
Glad to hear the positive news from everyone - well except the money, obviously. That is worst nightmare situation.
Katsh - how was play therapy?

Morning all. PoA - hope the money is getting sorted, and glad you had a good time away. 21again, I'm glad your half term was good too. Dwardle - I'm glad that your dd got to see someone so positive. I hope that things go well for her this week.

Play therapy was odd. For the first assessment the therapist came to our house and wanted to be alone with dd for 45 minutes. It felt very strange to allow a stranger in to my little 7 yr old, so I must admit I eavesdropped a bit . dd liked her, and once the therapist comes back from her holidays mid - November dd will see her weekly at a children's centre. I hope that it will be useful to her - she has so much fear and anxiety and sadness about her cfs that she needs someone with the skills to see her through it.
I am feeling rather overwhelmed by it all. DD is still not doing so well, and I find it so sad, and frustrating, and I'm constantly questioning whether I'm caring for her well enough. I definitely need to tighten up the pacing again . I know that that helps, but it is so difficult to manage alongside my other 2.
I'm sorry to be a bit miserable and grumpy, but 7 mths in I feel pretty lost. I know that being at home all the time is making me rather isolated, but it's hard to see what the answer is.
Anyway, I shall get on with today : ) . Hope you all have a good day.

Katsch I do feel for you. Having had CFS myself it is so hard to imagine a 7 year old suffering with it. BUT the good news is that she will get better and you sound like a fab caring Mum to me so don't worry on that side of things. I do wish that there was an easy straightforward route to get rid of CFS for everyone. As I have spouted before I am a huge fan of LP.

It was so hard for me to believe that when I was bedridden, not even able to sit up to eat, and certainly not enough energy to chew that life would get back to normal but it has and it will for your family too. Hang on in there!

Katsh - I am pleased the play therapist seems a hit with your DD. Don't worry, I have stood at the door eavesdropping too with Mrs CBT, and my DD is 15!!

I am so sorry that you feel overwhelmed by life. I do so know how you feel. There have been many times this year that I have wanted to give up on everything - I think everyone on this thread has expressed the same frustrations. I know it is of very little comfort now to say that it won't last forever, but it won't. How much school is your DD managing now? Don't let any other stress be added on to your situation by "well meaning professionals". I am still learning to nod and smile and then do my own thing!! Thinking of you and hope that things improve for you soon. Your DD is young so i am sure you are far more tied to the house with her, but try to make time for yourself too. I used to have friends come and sit in another room with me when I was tied to the house for a long time, just to chill, chat and feel slightly normal! How about an evening out with DH, too?

Here we have had a surprisingly good week so far. I expected real fallout from last week, but so far it has gone OK. School has been halved and the stress is off from there, so maybe that has helped. I feel as if I am on a see-saw at times. When she increases she goes downhill, then we reduce activity and she is well again, so we increase again and so on. Round and round and round! Still amazing progress from the first half of the year though, so being positive!

Tea is ready, so must sign off. How are you all doing? Hope you everyone is keeping OK. Love to you all.

Katsch - I just wanted to reiterate what everyone else has said. I feel for you at the moment. Just try to do a bit for yourself. You are a great mum but the frustration with this illness is that however you try you can't control it for your DD at the moment. Take heart from everyone on here. Believe you me we have all had terrible times. You must believe that your DD will get better because she will!

Look after yourself. A big cyber hug from me. We are all here for you so come and moan as much as you like!!

OM xx

Thank you lovely kind supportive ladies . The day got worse ... tonight was awful around bedtime, she felt so sick and she expressed all the fears and worries she has, and told me she'd rather die than feel as bad as she does I know she's only little and therefore doesn't mean things like that however it doesn't lessen the pain of seeing her coping with these things.
I will keep all your good suggestions and comforting words in mind. I know she will get better - as they all will.
Hope everyone has had a better day . Big grateful hugs to all of you.

Hugs from me Katsh. I know just how hard this is and how sad you are feeling right now. It is so awful seeing our DCs so ill. You are coping tremendously well especially having two other young DCs to deal with, but as Positive says - maybe some time out with DH if you could get a babysitter. I do remember not actually wanting to leave DD for a while as I felt guilty at being able to go out when she couldn't.

As everybody else has said - she will get better. My DD is still well, it is now two years since she first had flu and got sick. That seems a long time I know but she hasn't been acutely ill since January this year, so the better times started a good while ago.

I know they are all different and will recover at different rates, but take heart. You are being a wonderful mother to her, and in some ways this will bring you closer than ever. Thinking of you today, post if you can.

Katsch - I think although awful for you, it was a good thing that your DD expressed all that emotion. Much better than bottling it up. I'm sure you did reassure her that she will get better because what she needs is a mummy who tells her it will all be OK in the end. Try not to worry, think of that conversation as healing....

Thinking of you...
Post later...
Have a peaceful day...

Katsh - send big big hug.

Me again- dd came home early from school cos she felt awful but has just gone off to visit friend who is long term in a unit for anorexics so in the great scheme of things.....
Totally agree with 21 again and optimistic - you WILL get through this but it is hard.

Katsh hope you are ok - thinking of you.

Dwardle - sorry DD is feeling bad but at least she feels well enough to visit her friend. You are right - there is always someone worse off - and being in the anorexic unit does rather put things into perspective. I hope her friend is improving.

Good morning - thanks for your posts yesterday - they really helped. We managed yesterday a bit better. I spent more time just giving hugs, and less time trying to keep the household running, and I think we both felt better for that. I am waiting for her to wake up and hopefully today will be a reasonable day.
I was glad I was in slightly better mood by last night as my Mum was admitted to hospital with heart problems . She's been unwell before, but this is a new twist, so hoping she responds to some meds they were trying overnight. I got up early this morning to go swimming - I've a dodgy back, and it keeps me moving - but unfortunately dodgy back went bad as I turned to lock the door behind me, so I hobbled back inside and I'm lurking downstairs so as not to wake the rest of the family .
Dwardle - I hope that your dd feels a bit better today.
Have a good day everyone.

Katsch - you really are going through it at the moment aren't you? Keep your chin up. As they say 'This too will pass'. Have as good a day as you can. I hope your Mum improves and you feel better later....

Dwardle - take heart. Your DD is so much better. The anorexic unit definitely puts everything in perspective. Teenage girls are a complex being!Even without the ME they are going to 'do' emotional issues in my opinion. You need to keep gently reminding her to use her LP techniques and give your practitioner another ring/email. She may say that your DD needs some top-up coaching....

Hi to 21again, Positive and anyone else who is lurking!

It's all about perspective isn't it. I've just heard from a friend of mine that her best friend's little boy has drowned. I can't begin to imagine the horror of that. It is important to keep remembering that many people have much more to contend with. DD has gone into school and didn't have to be peeled off me. Really, in the big scheme of things, life isn't bad at all.