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!

Dwardle - sorry that you are feeling overwhelmed I do hope that you get an answer to dd's pain soon - does that mean that she is at home? It's good that Ds is a bit happier - I hope that Ofsted goes well for your dh, and that you find the space to get your work done.

Dwardle, So sorry that this is all happening to you and your family now. I really hope the scan shows a cause that can be sorted for you DDs pains.
Don''t forget yourself in all the stress around you. ENjoy a glass of wine, or some time with your trainer - is he young and dark and mysterious???
Keep your chin up and this will pass. Is Ofsted this week? Hope DH is ok.
I know it is not the done thing on here, but to you and "speak" soon.

Dwardle so sorry DD has been ill but glad like you that it is not chronic fatigue. When will she have the ultrasound? I remember having pain in a similar place and was eventually diagnosed with an ovarian cyst which simply dispersed on its own. I do hope things pick up soon. You have such a lot on your plate right now and I can understand the feeling of being overwhelmed. Take a deep breath and try not to worry. (((((Hugs)))) to you,you sound as if you need them right now.

Katsh - I agree you should take up therapists offer, it does help to offload onto someone else. Good luck with the blue badge appeal.

Thank you thank you for your hugs and words of support. DD managed half a day at school today. Am about to go over DH's observed lesson with him! It is tomorrow.
Sadly my trainer is female and very thin/fit - but great and I have lost loads of weight but without feeling hungry and still drinking at weekends
Thanks again - back soon!

Dwardle, you have shattered all my visions of you with your trainer!

Hi all..
Sorry you're having a *p week Dwardle.
Since when were hugs not the done thing??
(((((hugs))))) to your family. 'It too will pass' as they say.
Katsh - agree with everyone else. Take up all offers of help. You never know...

Love to Positive and 21again...

Hi all,

Dwardle - thinking of you. How did the lesson go for DH? How is DD today and how long do you have to wait for the scan?

We had a breakthrough here today, or maybe a bit of a breakdown! DD has been getting more and more exhausted by the end of her hour and ten minutes each time I collect her. On the way home today she broke down in tears and admitted that she is finding it all too much. She is supposed to be increasing again next week, but knows she really cant. At least she has finally admitted it! So came straight home and emailed CBT lady and head of the unit to let them know that we do not want it increased next week and perhaps it all needs re-assessing as to where we go from here. I am so pleased that DD felt able to say this and we did not have to force her into doing anything that she objected to. Head of unit emailed straight back and was lovely (I still find this attitude really alien - she is human, approachable and listens! WOW!!!)I will expect an answer from Mrs CBT tomorrow.

I hope everybody else is still doing ok.

dd went to school today
dh coped okay!

Good news about your dd, positive attitude - it is really because she is accepting Does the unit timetable have to be so structured? could she go in if she feels up to it - put decision into her hands so she is in control? We found that really reduced coinflict and led to a calmer life. DD DID opt to go in quite often!
So pleased unit head is lovely - great to prove there are some nice educationalists out there!

Dwardle - so pleased your DD was well enough to go to school. Tell your DH well done, he can relax a bit now, and I hope you are feeling less stressed. Have been to the gym today, it is amazing how much better it has made me feel - I was very lethargic beforehand. I'm sure you are feeling the benefits of your keep fit regime and it does inspire you to keep going doesn't it?

Positive - we found that reducing the pressure on DD made such a difference to her so hopefully your DD will relax a bit knowing she does not have to increase next week. Possibly, acceptance is part of this and will help her to start to improve.

DD is doing so well right now but I feel a bit guilty posting about it. I know some of you are having such a bad time at the moment but remember we have been there and know how desparate it all feels.

Katsh, Nickschick and Choc hope everything is improving.

Optimistic hi, hope you have all beaten the swine flu bug .

21 again- Please keep posting and don't feel guilty! I love to hear that someone is coming out the other side of this. We need that to keep positive. it is lovely to hear and I cant wait for the day I can post good things again.

Hi to you all.

Come here for a mild rant.

Just had conversation with Mrs CBT!

She has been to a conference on CFS/ME last week and wants to come and discuss things with me. - Fair enough, I am all up for as much information as possible.
She then went on to say that she noticed that DD had been having McDonald's meals when she has been round and thought she would come and talk about DDs diet with me. Apparently, the last time she visited home DD had one for lunch before her appointment. I remember the day well. Mrs CBT had phoned me at work and said that she would come 30 mins earlier than planned, leaving me no time to get home and do a lunch before the appointment and DD was going out afterwards and would only be having a light tea. So, due to the rush I grabbed a MCd on way home as a treat. Is that so bad!!???? I can count on one hand the number she has had over the past year. But she does consider it a treat when she does. DD, and the whole family, always have a homecooked meal each night and actually DD3 is a veg lover anyway. Not keen on fruit though.
Went on to say that if I was adamant that DD would not cope with increased time next week, then we would delay the increase and stick with the 1 hour 10 mins. I had written to her this week and said no way could it increase as she was not coping with what she had now! She said if we sort out diet the increase would not be a problem !!! She also said DD needs to get used to the time, so must not reduce it.
I just feel as if she has just really misread the whole situation and certainly not understood DDs attitude and how much she is struggling at the moment. Still not sure where the line between pacing and graded exercise is, and have we gone over that line?

DD was really bad yesterday and was unable to eat her tea (no, not McD,- Chicken breast + veg!) because she was too tired! She comes home from school and sits on the sofa for at least an hour before she has the energy to be able to think straight! Is that how it should be???

Ok, so maybe I am being irrationally tetchy about this, But I really feel as if she is questioning my parenting.

Positive - you don't need to hide under a rock or be worried about rotten tomatoes It sounds as though Mrs CBT is totally misreading the situation. The problem is ( as I in my limited experience see it) that professionals go to conferences, read books, meet a number of children with CFS, but they never have to take one home with them and try it on 24/7 . I suspect if she did then she wouldn't feel that cutting out the odd McD's would fix it all.
Your dd sounds as though the unit is really taking it out of her, and she's just not ready for the increase yet. I've had to be a bit firm with our school and say we are only increasing after dd has managed 2 weeks at the same level successfully. What I don't tell them is that my definition of success is that she has a bit of energy to play, to be happy, and not to be a volatile thundercloud in our midst - and as with your dd, that she also has had enough energy to want to eat her meals.
It's all so complicated, but you sound as if you are doing great. Just let the diet comments wash over you and don't take them to heart. I can't remember which of you suggested that I stick my fingers in my ears and sing loudly when people gave me unhelpful suggestions, but maybe it would work in this situations .
hope the day gets better.

Positive - of course it won't hurt DD3 to have the odd McD! how bizarre of Mrs CBT to think that cutting it out would help! Do you think she was thinking about the coeliac link? Has DD been tested for this, sorry I can't remember.
You have to do what you think is right for your DD3. this illness is very confusing and it does make you question your parenting without some old trout suggesting you can't parent properly.!! As far as lying on sofa goes. ALL kids including my DD come home and veg out for an hour before doing anything else!!

Come on, Positive, keep cheerful and get that sink shiny. It will make you feel better - honest Don't fret about what others say, stick to your guns and what you feel is right. It might be worth having a 'full and frank' discussion with DD3 to see where she is with her thinking...

BTW - she will get better, you know that don't you?

Completely agree with Optimistic and Katsh - the odd Mcdonalds will do no harm, indeed if your DD sees it as a treat, then it can only be a good thing as it will be something she looks forward to.

As far as pacing goes, I do think it should only be increased if DD is happy she can cope, and it doesn't sound too much like it at the moment. The website AYME gives some good advice on this if you haven't already seen it.

I hope you are feeling less fragile now. When is the therapist coming to visit? At least it is the weekend now and DD can relax a bit which should help. I hope you get some time to relax also. Isn't it weekends when you are allowed a drink?

Hi to everyone have a good weekend and keep posting..

Oh you poor thing. I think people get better despite conventional medical treatment not because of it!! What is that CBT lady on about!?!?!

You know your children better than anyone else. If ME was caused by eating McDonalds the whole of teenage society would be wiped out.

Sorry going to mention LP again but one thing they teach you is how beliefs are just that. So Mrs CBT's opinion is just her belief. If the belief or opinion does not help you enhance your life take no notice of it at all. A philosophy I would adopt here. Do take you things will get better

Thank you for your kind comments. Feeling a lot more rational and controlled again.
Told DH what Mrs CBT said and he was furious. He is dead against any meddling in our private lives anyway and thinks we should just tell her to get lost! I think the appointment on Friday will be her last chance.

Katch - Your comment - "What I don't tell them is that my definition of success is that she has a bit of energy to play, to be happy, and not to be a volatile thundercloud in our midst" - That is so true. Every ounce of DDs energy is used in either getting ready for school or being there. She does nothing else. That is no life for a 15 year old. And I am fed up of the whole family having to step around her as if on eggshells because she is too tired to communicate in a civil way. I think I am going to have to stand my ground on Friday and be strong. I am not very good at that really as I tend to think of everything I should have said after I have agreed to the opposite!

dwardle - Hope things have calmed down with your family. Have a relaxing weekend.

Thanks again everyone, you are all brilliant!

excuse me interrupting. I wonder if you have seen this

Thanks stuffitllllamma. A friend gave me the independent this morning, as it had made the front page. I meant to mention it earlier. I know it's early stages but exciting. Thank you for thinking of us

That's really interesting Stuffit. Thank you.

Katsh Sorry, I keep spelling your name wrong!

Stuffit - that's so interesting. I have no doubt that my DD suffered from an unknown virus for well over 18 mths of her M.E. I personally think that eventually the virus leaves you but you have emotional fallout. ie my DD was recovered from the virus but it had left her unable to be confident in her own abilities to lead a normal life. For us that's when LP came along. It gave her the psychological tools to help her make the steps back to a normal life. I knew the virus had passed because she had no more body temp issues/headache/ tiredness just an inability to 'get back'. That is why I think that it takes a significant amount of time for sufferers to go down the LP path. It is also my explanation as to why LP works.

Hope this helps somebody....

OM - Forgot to say that DD WAS tested for coeliac and it was all negative. Also a bit of a "lightbulb" moment reading your post this morning. DD is still getting the body temperature issues, headaches, shakes and general "ill" feeling. Is this perhaps because she has not reached that stage yet? She has improved massively and perhaps we are nearly there, then the second bit of the recovery can take place. Maybe I am clutching at straws, or maybe I am just rambling on and on! I will google this research bit some more and perhaps use it to show I have more of an idea on Friday's appointment.

Have decided to ask for evidence of any new theories Mrs CBT is going to give me. I will then read up and make an informed decision, rather than feeling beaten into something that she wants to impose.
I will be ready for this!!!!!

Have a good weekend, everyone.

Good for you Positive. No I don't think you are clutching at straws at all. It's only my belief though. I just found that around Feb last year DD didn't seem to look so awful but was still refusing to go to school and body checking a lot. She needed emotional (I refuse to call it mental) help with ,as I say, the fallout from being ill. I have thought a lot about this and think that the emotional impact applies to lots of long-term illnesses.e.g. cancer, lupus etc etc

Please don't shoot me down anybody. These are my opinions and you don't have to agree with them!!!!!!!

Hmmm - as usual, you are all making lots of sense! Posatt - was rather horrified at Mrs CBT but just a thought - was she just making false assumptions and trying to be helpful? I am sure a healthy diet helps and am ABSOLUTELY sure your dd -gets one - you are right about the odd McD not being a sin - but does she know that your dd gets a healthy diet? I know lots of children who have anything but a healthy diet (I see in their lunchboxes) and have a ds who is one of them -no fruit and veg!
What it sounds like is that Mrs CBT is totally lacking in some social skills. I am NOT defending her, by the way! Is interesting that she comes to yr house. My dd goes to them for her CBT and I rarely go - it is very much between her and her person there. This was hard for me at first but as I am realising daily, being the parent of a teenager means relinquishing control. I think with me, this is very hard but also very necessary - we cannot control this illness.
Does she have to see dd at yr house? Is she private or provided via CAMHS or Dr? Does dd like her? Could you do dd's food diary for a week and chuck it at her? Is there an alternative??????????? FRom your posts, she does sound very opinionated! It would be very interesting to find out what else she had learned at her conference!
From your post today, it does really sound like your dd is still having virus-like symptoms. She sounds like we were at the beginning of the year. When dd did LP she was more stuck and lethargic than anything else. I SO agree with Katsh re the definition of success - that is ours too.You know your daughter and you know what she can cope with. Don't aplogise for ranting - if we can't rant here, where can we rant?

DD is still suffering and has only been into school once this week. Diagnosis still missing and more and more things being excluded so I have finally persuaded her to redouble her efforts using LP and see if she can use her brain to overcome the pain. She read an article this am which said that children can use their imagination to overcome stomach pain and this seems to have inspired her. I am not at all sure whether this is a stress/cfs/school pain or a real one caused by heaven knows what! GPs have been very supportive and next step is a scan (ultrasound) However, I do think that because it has been going on for a while without getting worse or going, I think she is 'doing' stomach pain, to use the LP language! She found this hard to accept at first but I think she is going to try!
Not sure all this makes much sense as I keep scrolling between posts and typing!
What I think more than anything is as Dinamum said - take no notice of stuff that is not useful and is opinion not fact.

Hope you are all having a great weekend and relaxing if possible! Don't think my trainer approves of wine drinking but there is a limit to how much self control I can exert and what i NEED on a Friday night! Husband survived Ofsted too!

A long post dwardle!

lots of questions, but I will answer the ones I remember. CBT comes to home because when she started DD was unable to move off the sofa. I am not in on the consultation, then she speaks to me afterwards normally. She does seem very opinionated and very unbendable, but she is "ok". DD is not too struck on her and I just get very riled, but I think that is more me not particulary wanting others butting their noses in and being very defensive. I do think she has assumed about DDs diet. I would say that it is a very good, healthy balanced diet, and I was a nurse, so I sort of know what I am talking about! Perhaps she is looking at my "size" and assuming about the family's diet, but maybe that is me being over sensitive. A good idea about the food diary. I will do that until Friday and see what she has to say. I won't give it to her immediately, just wait and be quiet, wait for the advice, which I am pretty sure is going to be what we are doing, then ask if she should have something like "this" and hand her the diary!!!

Another bad day today. I am sure that the time at school is too long for her, or perhaps too many times a week. She's just struggled to eat a tea and ended up choking, which she had not been doing for a few months.

I hope your DD gets her pains sorted out. It must be worrying for you all and very frustrating after you have come so far.

hi to everyone else, Have a good weekend.

Interesting article. DH and I had wondered about this on several occasions. We knew that DD's illness started with a virus but had no idea as to how long that virus was continuing to make her ill as opposed to her being stuck in some kind of rut. Certainly we were not of the opinion that she was ill at all during the Summer, but as soon as she went back to her old school we could see her going downhill. Now that that pressure has been removed she is a different girl and, although she is still facing pressures, she is dealing with them easily. Maybe the move enabled her to change her thought patterns and that was all that was needed.

I think all of us have been feeling our way in the dark with this illness, sometimes getting it right and sometimes not. It seems the more you read the more confusing it all gets. I can see why LP works, and to a lesser extent CBT - although it takes longer. I did ask the LP practitioner whether a patient has to be ill for a certain length of time for LP to work. His response was no and that he had worked with people who had been ill for a few weeks only. Maybe in those cases the virus had cleared quickly - who knows?

Good idea about the food diary Positive and I'm sorry DD is feeling so bad. It does all seem too much for her right now and hopefully the half term break will do her good.

Dwardle I remember talking to my sister's friend who had done LP and she was then using the process to help with other health issues she was having. She got good results so it certainly is worth your DD trying this.

Have a restful weekend everyone, at least half term is just around the corner.