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!

Littlepollyflinders welcome - but I'm sorry to hear about the accident. Like Optimistic I feel your DD will probably bounce back, but is feeling a little shocked and traumatised right now. Totally understandable in the circumstances. Have heard about the effect that wheat and gluten intolerance can have on a body and thankyou for that information. I don't think it's an issue with my DD as she is so much better without excluding it from her diet, but it certainly is worth exploring for some people.

Choc your DD has made such progress, I hope she can continue. Shame the teacher didn't give you some warning of what was happening and hope you get it all sorted soon. I'm sure DD will cope now that she is so much better and stronger.

Positive - I echo Optimistic's comments about the CBT lady. If she is very experienced in all of this and your DD has faith in her then it should work, if not please be very careful. We have all had some very hard decisions to make and it is a tough time. Hugs to you.

Dwardle - hi, I hope all is well with DD.

Katsh and Nickschick how are DCs.

Hi guys I am so sorry to hear that some of you are having a bad time at the moment. Any consolation I did not want to accept that I had ME. I refused to admit it despite having it confirmed by the Drs etc. I was frightened as I thought it was an illness that did not get better. Anyway I still did LP and LP will work for many issues so you do not need to accept that you have ME. Just do the process and it works anyway.

My heart goes out to your DC as I have tried the trying to be normal, special diets, CBT, pushing myself through it But none of this worked because my brain was still reacting in the ME loop. LP gives you the strategies to cope. When you feel the symptons do the process and it changes the way your body reacts and over time the symptons.

I know it sounds like I am on my soap box and I am no way telling you what to do or how to do it but just that my heart does out to you all. I was there - I was that person struggling to be normal. Now I have just come back from 7 hours teaching, having got up this morning to walk the dog first and drop off my darling toddler at childminder

Thank you Dinamum for giving us a positive perspective on all this. It is really encouraging that you are now so well and able to do all that in a day with no trouble. Another LP evangelist - you are in good company on this thread!

Thank you all for your comments.
I have spoken to the head of the specialist unit this afternoon and she was really good about everything. I will discuss with DH tonight, but my feeling at the moment is that we will give it a couple of days, but pull the plug instantly if things are going wrong, whatever CBT lady says!!!

Littlepollyflinders - I hope your DD recovers quickly and bounces back again.

Choc - Poor DD, after such a good start. I hope the tutor can understand your concerns and adjust it all for you and DD.

Education meeting does not look as if it going to go ahead now - my choice!! Postponed so that we can have people there who should be there!

OM - Not as shiny as it should be - and probably not as shiny as yours!!!

Have a good weekend everyone and I hope all Dcs can relax and enjoy themselves.

Dinamum - I echo all your comments! I was trying to say something similar but you said it so much better! My DD was down to 20 per cent of school and the threat of home tuition. We did LP and it was nothing short of a miracle! She has been back 100 per cent of the time (give or take the odd day) since March. I totally agree that LP gave her the tools to be well and stop running the ME loop. For instance, this week she has had a headache and as I said previously I began to be worried but she has used the process and has been to school for the rest of the week despite her headache. This time last year she would have been off for the whole week as she had no confidence in her ability to be well. She is out now at a film evening
It's so nice to hear your comments regarding LP as you are an adult who's done it and you are able to express the benefits first hand to everyone. I went on the course with my DD but I haven't had ME so it's difficult to imagine. I have found the techniques useful for me when dealing with anxiety etc etc

Hi there everyone. I have come on to have a rant!
I have decided that DD3 can be horrible!! Please dont call social services!
I am fed up of doing everything I possibly can for her and she just shouts and takes everything out on me, or causes arguements with siblings and I end up getting all stressed out.
She had been getting really down about not being able to do anything, so last evening she was allowed to a friends house to watch a dvd. Negotiated the timings etc. Anyway, she came home an hour before the agreed time, due to feeling bad, then straight to bed. Today she is foul! I have not had a nice word from her all day.
The rational mum part of me knows this reaction is because she is too tired to cope with life. She is fed up with all the restrictions CFS/ME has caused and she is struggling far more than she wants to admit to herself, or anyone else.

Once again I have had enough!
Just read back through the most recent posts and I am pleased that you ended up shouting at your DD on Wednesday, OM. That made me feel better! I do love her and I know I should be more patient, but sometimes I feel just like screaming back at her! What's worse, sometimes I do!

Oh, Positive - don't beat yourself up. You are being extremely patient and she is extremely fed up and taking it out of the person she loves the most because it's safe to do so!
Is there no way she will agree to LP? Has she reached the point where she's desperate to be well? Sorry, I know we all have choices but I feel so much that if she gave it a chance you could end all this....
You know that she could email mine or dwardle's DD to discuss it. Not sure what is stopping her....

Hope you're feeling better after your 'rant'.
That's what we're here for!

Positive - she is feeling so bad and fed up that her normal reaction is to be grumpy and horrid. You are all living under the most dreadful stress (I know, I've been there) and arguments are a natural consequence of this.

I agree that LP is very definitely an option to consider. I know we didn't do it but DD's relapses were considerably short lived and she was never as bad as your DD. DH and I have agreed that if she had been worse we would have had to go down that road. I think we have been lucky and she is coming through this on her own - which many people do - but your DD does not seem so fortunate right now. Optimistic and Dwardle are the people to talk to about that, but we are all here for you and understand what you are going through.

Rant as much as you like, this is a good place to do it, and try to take a little time to spend by yourself. Perhaps a bath where you can just relax and shut the rest of the world away even for a short time.

Thinking of you...

Thanks for the positive encouragement!
I am feeling more relaxed now. DD has calmed down, too. I do agree with what you are saying, and she asked for her food to be cut up at tea time tonight, which is the first time for a few months. She just couldn't cope with the cutting and feeding. She must be feeling really bad again. A few weeks ago I wrote about how I felt going back downhill again and I am sure it is 100% more frustrating for her as each step of the way is something she thought was behind her!
I am sort of steering clear of the LP talk at the moment just because she gets so wound up by it whenever I have broached the subject up til now. I WILL pick my time soon and test the water again. IF she gets to the point of wanting to ask questions with your DDs I will be in touch, thanks for the offers.

Hope all your weekends have been good.

Oh Positive
How many times have we all been there?
Great advice from OM and 21again - they are such wonderful support
OM - spoke to LP practitioner on Fri - really helped so THANK YOU!
Positive -It is really hard and of course your dd will take it out on you who else?!!! When she is calm, you could try the emotional intelligence stuff - put yourself in their shoes - bit, but I am sure she is feeling bad about it all anyway. I know you are scared of a crash again but maybe it would help acceptance - maybe that is what is already happening? Esp if she has asked for help tonight?
Had tricky weekend here with ds - too long to go into now - but why when things are just getting better with dd - slowly- does ds go off on one
dh and I have to go and see his dad in sussex at half term so I have persuaded him that instead of night in travelodge, we are doing night in gorgeous hotel! Leaving children with my lovely brother, father of new baby. Realised just how much stress we have been under when dh agreed toplan with NO objections
point I am long windedly trying to make is that maybe, Positive, you may need to actively have a plan for you time - even rarely and snatched. I have (confession time) signed up with personal trainer - is WONDERFUL!!!!! someone looking after me instead of me as carer.

Great to hear you sounding more like yourself, Positive!

Guess what? I have been officially diagnosed with Swine Flu by the man at the helpline. Still feel absolutely awful and have got my code for tamiflu . Unfortunately DS2 has it and DD is still looking awful too and I think is about 2 days behind! Her attendance is going to be down again . Why does it feel like a competition to get her atttendance up? I find myself with calculator in hand working it out

Trying to persuade DH to sleep elsewhere but he insists he is made of stern stuff! DS1 has resorted to getting us all to pass him things with a pair of kitchen tongs and has used up a whole load of gel!

Poor you OM - are you going to take Tamiflu?
Try not to worry about dd - doing swineflu now means she gets it over and done with before it gets cold and dark and she can get back into the swing of things. It is not long to half term which might be a welcome break. I sometimes feel summer is too long and the autumn term is a very nasty shock to the system. A short break is somehow more constructive. Love yr ds1!
Get well soon

DS1 I should add did make us a shepherd's pie from scratch yesterday so he's not that precious really.. Unfortunately when he asked for our opinion 3 of us were unable to taste it!!!!!
Am phoning doc regarding tamiflu. My inclination is not to take it, but you are prescribed it as a matter of course as a one off so you have to cash it in really....
DD was sick in night but no temperature yet...
Hope all DC are having a relatively good day [weak smile emoticon]

Oh Optimistic - so sorry you've all got swine flu . I hope DH is looking after you and am very impressed with the shepherd's pie. I know how you feel about the tamiflu, I think I would be reluctant to take it but not really sure why!! Hope DD is ok and if she does get flu at least you know she can deal with any after effects.

Dwardle sorry you have had problems with DS and I hope they resolve themselves soon. Just as one problem disappears another rears its ugly head!! But.... have a great time away in Sussex, and am very envious of the personal trainer. Are you noticing a difference in how you look and feel yet or is it too early to tell? I have a vision of you water bottle in hand and looking very toned.

Positive - it is so disappointing when DCs relapse just as we are getting our hopes up that this may all be behind them. I re-read this thread the other day and it struck me that one common feature for all the DCs was the pressure getting to them when they return to school. I know your DD is in a special unit but she probably feels the presssure nonetheless. We noticed a considerable difference in our DD when we told her school was out until she felt better. She was then able to muster some strength before resuming pacing. It was as if a weight was lifted and she could concentrate on recovery. I know everyone is different but it doesn't hurt to know these things. It has been the same for our DD with the change of schools now, she is still well and doesn't seem to be considering the possibility of being ill again.

Katsh, Nickschick and Choc hi and hope things are going well.

DD still has stomach pains one week on. Dr a bit perplexed and symapathetic!
She is not at all like she was when she had cfs though which keeps me going.
How are you all and your dcs?
How is the swine flu?

Feeling much better today, Dwardle although DD is full of cough/cold/splitting headache but no temp so no swine flu....
Sorry to hear about your DD. Have you asked her 'does it feel like before when you had CFS or not?' If she's nothing like she was before then be heartened!!
My DH is proving invaluable at telling me our DD is ill/well! I have totally lost my judgement when it comes to her health!!
Presumably Doc has done to usual stuff - periods/gynae/appendix etc etc. What about intolerances?
Hope all is well with you at school. Ours has been decimated staff-wise this week..

hi all,
Glad you are feeling better OM and dwardle, I hope DD is feeling better. 21 - hope your DD is still coping well at school.
Hi to choc, Kasch and Nickschic and anyone else I have forgotten.

Well, I thought I would come on and tell you all how we are doing. I am quick to get on here when I am in dire need of a shoulder to cry on or a kick up the bum, so here is some good news today, instead.
DD has managed 2 days in a row without having a meltdown. Only on Monday i was wondering whether we should stop everything and go back to the start again with the pacing, or just shut the door and ignore life for the next 8 months. Tuesday, she woke up fine. She has coped with her time at school without having huge grumps and is even quite lively - well, lets not get carried away here, she can be bothered to go upstairs and get ready or school without stopping to summon up the energy! How do you all cope with this rollercoaster? I know that this will probably not last, but am enjoying it while it is here. CBT lady is going to phone later to see how she is doing and I will have to eat humble pie and admit that she could have been right yet again!

Long may it last. Have a good day, everyone.

So glad you are feeling so upbeat, Positive. Well done to your DD

To put some perspective on all this.. my DD who is now recovered from CFS/ME has had 5 days off already this term. There is a lot going around atm.

Hope everyone else is doing OK on the thread.

Well done Positive's DD, that is such good news. You see what she is capable of, she has shown such determination and she will beat this .

DD is really well. She has coped with a full timetable and this week played in a hockey match on Tuesday afternoon, meaning she didn't get home until 6.45pm. She has said she is tired this week and her eyes feel heavy but I can hear her laughing and joking with her sister, and the more of that she does the more her brain gets used to the positive patterns. DH spoke to her maths teacher today who told him that she has come second in a maths test and they want her to sit a gcse maths module in November. DD isn't keen but we will discuss it with her at the weekend when she will have had her test results and should be feeling more confident.

Please take heart from this, they do get better although I am very aware that relapses can and do still happen at this stage. I do appreciate that we have been lucky to be able to change schools and that DD has settled in so well.

I hope everyone else is well and coping with the nasty bugs around.

I wish I could delete my last message. Thanks for the kind words though!
As soon as I formulate the thought that things are going ok, they all explode in my face! terrible afternoon and evening. One very angry, frustrated teenager does not make for a peaceful house!

Positive - so sorry, how are things now? That is exactly how I have felt in the past. You just start to feel you are getting somewhere and it all falls flat again. It is so wearing.

Hi all,

I hope you are all "doing life" and doing it well with DCs and that is why it has gone a little slow on this thread.

dwardle - how is your DD now? Hope she is better and doing well at school.

Choc - Hows it going with the online education?

OM - Are things still good with your DD. Did she get Swine flu? How did she cope if she did?

21 - Thanks for your post. Hard isn't it. It sounds as if your DD is doing well at her new school. Good on you! (and her!!)

Katsch - How are things with your DD at school?

Nickschick - How about DS?

Here, DD has managed each day last week, increasing to 1 hour 10 mins, but we have had huge fall out in the evenings, which is becoming a bit much for the rest of the family to have to put up with! Things have been all a bit fraught and I am basically fed up of walking on egg shells!! Last night she did actually agree that she was horrible when she was too tired and trying to keep going. I am still considering knocking the whole school thing on the head, but DD absolutely loves it and I feel it will destroy her confidence if she has to stop. Maybe I'm clinging on to the fact that just maybe she will get used to it and will be able to cope better. I suppose as things go on her health will go one way or another, but I don't know how long to give it. Thinking we will have a long think at half term, if we get that far.

Have a good week.

Hi positive - hello everyone else. Glad your DD has managed school, but sorry about the fall out. It's not pretty is it? I know that walking on egg shells feeling so well. I hope that you get some clarity in your thinking on school. I have a school meeting on Wed this week, and although sometimes I want to ditch it, dd really likes it. Sounds rather like your dd too.
We are off to an assessment appointment with the local CAHMS service at 2pm. I'm hoping that is going to give us some of the tools we need to manage the whole psychology of this illness. I've no idea what to expect, and I'm a bit nervous.
DD had a better week last week and managed her 3 hrs of school, plus an extra trip in for class photo. She also managed ds's 2nd birthday - we had arranged to go to the local park, rather than have people here, and she came and played, and the afternoon and next day weren't as awful as I thought they'd be. We may be seeing a slight increase in energy levels - but I don't want to set myself up for a fall by being too hopeful! You all know what it's like.
We got turned down for a blue badge - dd can walk,almost all of the time, but we are trying to cut out all unnecessary walking as it does tire her. That didn't seem to fit the criteria. Have any of you applied and failed, or appealed?

Anyway like positive said, I hope that the quiet is due to rl going well. Look forward to updates soon.

Positive - it is hard to deal with the situation but remember DD is still so much better than she was. I think you are probably right that if she had to give up school it would be a huge blow to her confidence, what does the CBT lady think?

Katsh how did the meeting go? Hopefully they will have given you some helpful advice. Your DD coped well last week, but can you appeal against the blue badge ruling? It makes such a difference if you can reduce the walking especially as you have other young children to cope with and you can't leave DD at home if you go anywhere. Maybe your GP can help with that?

How is everyone else? DD had a good weekend, going out with her oldest friend - someone she doesn't go to school with. They caught the bus into town, went to the cinema and after a bit of a walk around town caught another bus back. It did her good and I think helps to be with someone different, but someone who has been a constant throughout most of her life. They don't see each other too often but I think it is good to have friends outside school and talk about different things. They are lucky that communication is so easy for them nowadays, facebook etc!

Hope all is well for everyone, keep posting..

Meeting went well. We were all seen together, so felt a bit difficult talking about dd's behaviour etc in front of her, but they've suggested that she see a play therapist weekly ( I guess that's CBT for little kids ) and the psychiatrist who assessed us today has also offered me a session with her, or more if I need them, as she correctly assessed that I needed some talking space. I am exhausted tonight ( doesn't help that 2yr old ds is turbo charged) - these things always take it out of me. Anyway I feel very positive that we are going to get some ongoing support.
Yes 21, I think I should enlist some help to appeal the blue badge. I am seeing the nurse specialist this week, so she might be able to provide a supporting letter or something.
I do hate that our kids have this illness, and I hate that we need the support of nurses, psychologists, psychiatrists etc, but I am so glad that they are all there.

Sorry have not been posting
DD has now seen GP 3 times, been to A&E and still has pain! Tonight she was referred for ultrasound. Still not sure what it is - is in place for appendix but she does not have all other symptoms and is not getting worse. Am SO fed upHowever, she is NOT chronically fatigued!
dh has Ofsted this week too. Ds has calmed down/cheered up so that's good. I have too much work to do.
Posatt - I really sympathise and am not sure what best steps are - have you tried asking cbt lady? Do I dare ask
Katsh - play therapy is very good usually. Do take up offer from psych - won't hurt and may help.
Sorry not to be very supportive or communicative - just feel overwhelmed.