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!

Sorry, Dwardle. Thought everyone finished on 17th! Oops, sorry, done it again , .
How is DD now, Dwardle?

21again - hope LP chat is useful....

Positive - am sure your DD will be fine. Raining here too.

Love to all.....

Hi, we're still in term time too! Thankfully DD got through her "leavers concert" ( leaving infants for juniors) today. She sat with the teacher operating the CD player, and enjoyed being part of it. I was worried I'd get upset but it was ok.
finding it all v. hard going still, and feeling desperate for expert management. Can I ask those who have been to GOSH who they saw there? Sorry I can't remember who has been where! HOpe the LP chat went well today.
I hope it's stopped raining where you are

Hi all, had an interesting chat with the practitioner. He was very nice and explained a lot to us which backed up what we knew already. The CBT that DD is having is based on the same principles, i.e that the pathways from the brain have become used to a certain action and this has to be changed in some way. He said he thought it was a good idea for DD to continue with the CBT for the time being, but had not come across anyone like our DD in that she is so well in between relapses. He firstly said that he thought he couldn't treat her while she was well, and that we would have to wait for another relapse before considering treatment.

We asked about the possibility of talking to different practitioners and preparing the ground in advance of another possible relapse, and then going to whichever practitioner had a course at the appropriate time. He said this was a possibility, but then decided that maybe she could do the course while well and if she then suffered a relapse later on, could have a one-to-one session to reinforce the process.

This second possibility is what I wanted to hear and I would have been happy if he had said that at first, but unfortunately it had the effect of making DH lose some faith in him. We are however, going to contact another practitioner who we know is more flexible about when she does the courses, and does more one-to-one treatments.

It has given us a lot to think about, but I do feel a bit down about it now. I know that DD is not going to relapse during the holidays, it is simply when things get too much at school that her brain tells her body to shut down. I just wanted to try to prevent it happening again and thought LP would be the way, but she is very unusual and the practitioner says he has never done the process on someone who is feeling completely well.

I do know that lots of people get better without doing LP, and maybe DD will be one of those, but I feel we have "missed the boat" and I can't take DD to LP without DH agreeing as well.

Katsh in answer to one of your questions, the practitioner said it doesn't matter whether someone has had CFS for four months or forty years, the process works just as well in both cases.

I need to go away and think about this but it would be good to hear from any of you with your comments on this. I think I had pinned too many hopes on LP, but waiting for DH to come around to it means maybe it can't happen now. Sorry I have become more and more pessimistic as I write this post, I need to sort myself out.

21 again, don't get down about this. I think it's more that you need to find a practitioner who is more 'intune' with you from the start. The comment about 'one-to-one treatment' I don't understand. At no point does LP talk about 'treatments' it's all about 'training'!! This is possibly why you have to have some sypmtoms to 'train' with iyswim!!Your DD would go to train herself in dealing with her illness so if you are not ill you can't!!
Try not to feel down. Be happy she's well. Yes you probably will have to wait until she's ill again. BUT.. she may not get ill again. I agree with you. Line up another practitioner for when/IF she has a relapse.As far as DH is concerned, well I'm sure I would feel the same as him. The chap you talked to didn't sound all that great to me either. It strikes me he did a U turn when he saw a potential client go...shame..., but it doesn't mean LP is not the right thing to do at the right time. You certainly haven't missed the boat.
I'm sure DH will fell differently if your DD does get ill again.
Hope you feel abit better. Keep in touch.We've been through a lot together.

Katsh - sorry forgot to answer your question. We were referred to the Adolescent Medicine Clinic at GOSH which doesn't help you but I would imagine they have a Paediatric CFS service. Try the website. Your consultant will know somewhere locally that has a Paed CFS Outpatients service that they can refer you to. Hope this helps. Am so glad that you had a nice day and that your DD was catered for. I do know how you are feeling. My 3 DC all transferred to the 'juniors' too. New head, new uniform, mixed up friendship groups...It's harder on the mums I think!!

Thanks Optimistic you are absolutely right, and I feel much better about it all today. DD is continuing with CBT now on a weekly basis throughout the Summer and, considering how well she has been doing with this, there is no reason why she shouldn't continue to improve.

She is extremely well now, and I do understand that she would need to experience symptoms in order to practise LP. I also think that it is not a good idea for DD to just do nothing and rest for the next few weeks and then expect to go back to school full time. She needs to play some sports, and have some structure to some of her days so that it is not such a shock to her system in September when she does go back. We can go swimming, play tennis, walk the dogs, ride bikes etc, and make sure she spends time with her friends. Does this sound like a good idea? I think she needs to maintain her fitness level to a degree, and perhaps catch up on a little bit of work. I'm not talking about all day everyday, just not vegetating simply because she was ill earlier.

21again - I think you are absolutely right about the fitness side of things. If your DD can improve her physical fitness it can only help! Our DD is doing this (she has joined the local gym for the summer!!) on the advice of the GOSH team to build up her stamina. I really feel your DD has cracked this from how you describe her. The main thing is to reassure her that she WILL be ill but it can be 'normally ill' iyswim. The biggest threat to her recovery is the assumption that if she gets ill, it's a relapse and so she has CFS/ME again.I'm sure the CBT person is working on this belief with her but it seems to me that, that would be most useful. Hope this helps....

Thanks Optimistic, you have always been a huge support here, not just for me but all the others. DD certainly is on good form and went for a long bike ride today on her own. She came back from the CBT session very upbeat, but won't ever tell me what she talks about. That's fine by me as long as she's getting something out of it.

Dwardle how are things? Looking forward to hearing how DD is.

Hi to everyone else, keep posting..

Hi Everyone
Well, after a week of cold, dd bounced back on Sunday and since then has done 2 days school, sleepover, lunch party, shopping, swimming at 8.30 am and other things too boring to mention!There has been no fallout at all.
She is back to normal, including teenager behaviour
We went to see her counsellor yesterday and he was thrilled too. He could see lots of links between LP and CBT. He has agreed to keep her on his books until she has been back at school a while but I don't think she will need to go again!
We are off to France on Sunday and have a lovely summer planned so I am optimistic!
Was thinking about your posts.
21Again - I think LP would be much more effective if you are feeling bad- one of the things if you are well is that you would have to remind yourself about feeling ill, which is exactly what LP teaches you to stop!! One of the main reasons we did LP in such a hurry was to get it done before the hols and whilst dd was still feeling so bad. So, if you are holding it as an option in the unlikely case of a relapse, then that would be very sensible imho (in my humble opinion??)
I think that your plan of CBT and exercise and fun is EXACTLY the right one and, incidentally, exactly what the team at dd's cfs clinic advised. They really encouraged dd to join the gym - with great sympathy for me as I have to go too and pay!!! I really understand what you say about body shutting down re school - that is my dd too. I am not going to think about September as dd now has a tool to use. I am sure that the CBT person will cover that with your dd.
Pos att - hope all is well with you, and your dd. It is good to hear good news from so many of you. I wonder how your dd is, Choc. Katsh - good luck finding a specialist and am so pleased your dd made the end of term. Hope you have a good summer.
OM - as usual, am in total agreement with your posts. Have a great summer
It has stopped monsooning (new verb- to rain extremely hard) so I am happy!

Hi all,

Will you please allow me to indulge myself in a little bit of motherly pride!! I have just spent 2 hours smiling like a cheshire cat!! - Just like that!!!!!

We have just been bowling with dd3 (&dd4 +friend) and I was bowled over by how alive and bouncy dd was. She looked the best she has looked for a year now and we all had a fantastic time. She looked so beautiful and tall..... I still am amazed she is so tall after being so used to her crawling everywhere for 6 months! Her eyes are sparkling and she is truly brimming with life (ok for short periods, but hey, let me get carried away just a little, please!!!) I am so happy for her! She went shopping with friends yesterday and plans another day out with friends on Monday, with tomorrow being a bit of a rest day! I know she could be doing too much, but I have just begun to think that we will cross that bridge IF we come to it and slow down if she feels she needs to! Maybe a stupid decision, but I really don't want to hold her back. "M.E. has held me back for too long" was her response when I said she should perhaps be prepared to slow up a little. Long may this all last!!

I cannot believe how far she has come in such a short time. Nearly as quickly as her downward spiral over the winter months.

Anyway thank you for allowing me to share that! I am really pleased for you too dwardle. All sounds really good! Have a good holiday.
We were advised not to book a holiday for this summer... I now regret that, but we are planning on having a nice wetroom built instead!
When you wrote monsooning i thought you had been shopping and spending lavish amounts of money!! (monsoon, the shop, where I could spend a fortune!)

Anyway, all have good summer hols and relax and refresh.
.

Wow wow wow - am so pleased for you and your dd and so happy and delighted that you can share such good news. just enjoy it and keep smiling!

Oh Positive, you don't know how good it is to read that. I am sooo pleased for you and your DD and I hope you keep posting to let us know how she is doing.

Dwardle - such good news about your DD, I knew she could do it. Have a great holiday and keep in touch.

Hi to everyone else, how are the DCs?

Positive - am so pleased your DD is so well. I think you have just the right attitude re. ME. Also, we really can't control the DCs levels of 'wellness' or really understand where they are. THEY are the only ones who know how they truly feel.

I'm just off to do some Bluewatering with DD...Am also regretting not booking a hot hol but then I remind myself about the airport queues and feel smug!

By the way...is it just me or does the grinning face on here look evil to any one else????? See what I mean?

Love to you all....

GGgggrrrrrrr!!
Just typed out a message and id disappeared! or simply evil

Had said thank you for all the encouraging posts. Still good here.

OM - were you thinking that I was looking evil when I said I looked just like this ??? {shock]
I prefer the suggestive myself.

Hope you are all enjoying the hols and relaxing well!

Positive - you KNOW what I mean!!!
But do you agree???

Glad everything is still going well. Are you going away - I can't remember....

I do know what you mean. I was only joking!!

We were advised not to book a holiday for this summer!!! Grrrr! We had one booked in April and it was all a massive problem and it ended up with me going with other dcs and one friend while DH stayed home with dd3 as she was way too unwell to travel. But can't really complain as just a few weeks ago we would never thought it would be possible. Last night sat and discussed the logistics of a last minute holiday for next week as we are both off work, but seemed a bit nightmarish, so will stay and sun rainbathe at home instead!!! We have agreed to put money toward a new wetroom and a big fridge freezer!!! WOW Don't we know how to have fun!!!!

Love to all, Mrs Evil!!!!

Mrs Evil Love it!!

Re the holidays, we have been in exactly the same position. Have cancelled trips and not booked trips, although now we know DD is well during Summer we can make plans. It does get better as you are finding out, and it is amazing how time flies by and you start to forget what it was like when they were ill . Rainbathe is the appropriate word at the moment, for goodness sake we can't seem to plan anything anyway because the weather is so unpredictable (or should that read predictable)?

Hope everyone is OK, and Dwardle not sure if you are away atm but sure DD is well and enjoying life.

Hi Optimistic when do you go to Suffolk? Do you stay on the coast? It is lovely there.

Nickschick, Katsh and Choc, hope all is OK, keep in touch if you can.

Hi, quick rant and let off steam please!

CBT lady has just come to see DD and had a word with me. She says DD is doing too much and she wants to avoid the boom and bust, which I totally agree with. However my arguement is that DD has REALLY improved so quickly that the small increases are now too small and she is getting frustrated with not doing anything. She has just spent the huge percentage of the last year on the sofa, so I just feel that if she wants to go to a friends house and spend some time chilling with mates, thats a massive step forward for her and for her emotional well-being I would prefer she does that and is happy than dead miserable sat here while life passes her by. I totally understand about the boom and bust and the fact that she should be able to do the same every day, but is that totally realistic in the school holidays when her friends are around. I have prioritised that she should socialise before we can even think about her education for next year and I feel this is so important for her. She has not had a big "bust" ( oh that sounds very wrong, but you know what I mean!!?????)
If she does "too much" one day, she may spend the next day at home with her siblings, but she has not had a real downturn at all. She seems to know her limitation and is very sensible about stopping before she gets to the point that causes damage.

Do you think I was harsh to the CBT lady? I just said what I thought and she was ok about it. She is very nice, which means I can't really argue with her.

Sorry a bit incoherent. I think I am feeling a bit guilty for going against what she has advised. Don't have a go at me. I know I am probably wrong, but feeling very delicate about it all. Please be gentle with me!!!

Positive - no-one is going to have a go at you!!! I've said it before and I'll say it again - you and her know what's right for her. In a sense does it matter if she has a 'bust' ? I totally agree with you in that her emotional wellbeing is extremely important. Everyone has to pace in life to a certain extent don't they? We all alternate quite naturally between heavy days and light days. I really wouldn't worry...You're probably more concerned that you 'talked straight' to a really nice CBT lady and feel a bit 'Gawd' about it!!! I do it all the time but again don't worry about it.

21again - I can't believe this is the BBQ summer we were promised!! I was feeling quite smug that we had opted to stay in UK this year (long and complicated!) but now??? We are going to coast, to the lovely place with the beach huts iykwim!! First DS1 is going up with 6 friends and DH is supervising from a B and B along with DS2 . I am a complete wreck about it and at the moment am imagining all sorts - at least 1 death and 3 serious injuries!!! Can't wait for next Tues and him and them back in one piece. BTW it's a mixed group!
We are going for last bit of the hol so will feel relaxed by then but I WANT SOME SUN!!!!!!!!!!!
Please only give me sympathy and reassurance. Pink and fluffy only. [ smile] (i really can't bring myself to do the grin!)

Thanks for that OM. I do feel a lot better about it all now. I spoke to DDs consultant yesterday, who totally agreed with me and said she would support whatever we think is best! She knows DD better than CBT lady and she agreed that DD needs to be in control and is sensible enough to do so.
I really don't hold back if I need to argue with someone who I either don't like, or they are wrong. I just found it hard to be straight with someone who is very nice and I totally understood, and even agree with, everything she was saying BUT.......

Is everyone else away???? We could always pretend that the sun has been shining and the temp in the 90's all week!!! I have been lazing on the beach with cold wine, good book, and perfect children all week. No, somehow I don't think they'll believe me!! Have a pink fluffy time when you go away. I am sure everyone will be fine this weekend. Put your feet up and enjoy some time for yourself.
Hope you are all having a fab time, anyway and I am not really jealous at all!!!!!!
from Mrs Evil

Here I am - computer has been playing up a bit but seems OK now.

Positive - I know exactly the problems this brings. We started the pacing very carefully with instructions to increase by 10% after two successful weeks. This was only OK while DD felt ill, but like your DD she improved rapidly and felt completely normal. While DD was at school we were able to keep the increases to a reasonable size but certainly more than 10%, and last Summer she lived a pretty normal life during the hols. Our paed did agree that at times the 10% increase is totally unrealistic and I think you have to judge each person individually. Probably some experts would disagree with me but I think that during the holidays the stresses and strains are fewer and so the patients can cope with other activities. Certainly as DD got better the increases in activities got bigger. Hope I'm making sense here.

Optimistic - What fun!! Your DH is really brave, is this your DS who has just finished his GCSEs? They will be having a great time, and hopefully the local papers haven't picked up on them yet!!!! . Our DD is going to another concert at the end of the Summer holidays, three days camping with friends. They had such a good time at the last one that we decided to treat them for an early 17th birthday present. They are due to go on the day the results come out so I do hope they all have happy faces that day .

Hi to everyone else... Post if you can.

21again - Yep! DS1 who is 17 in September (old for his year!).Am feeling much more relaxed now as we had all DC plus their 'rents' round last night and basically laid down the law! It was great to see all parents nodding in total agreement and DC looking slightly sheepish as they had each told their parent they were the ' fussiest, most controlling parent out of everyone's'!!!! That makes lots of us then.
Anyway they set off at 8.30 by train x3 and a bus.( didn't want to make it too easy for them!). DH and DS2 set off at 10!!

Positive - you are in a great place to say things like 'we have a micro-climate here as we are by the sea. Raining? Oh dear, we have 90 degrees in the shade!'
Hope DD is still feeling great! My DD is now living a normal teenage life ie bed at 11 up at midday!!!!!! Oh well...

Optimistic - isn't it amazing how they all do that - tell you you are unreasonable while everyone else's parents let them do so much more. It always turns out to not be the case . My brother lives about 15 mins away from where your DCs have gone so I do know the area well. Hope they all have a great time.

Positive - thinking about your CBT lady, has she had a lot of experience in dealing with CFS? If so I suppose you have to think carefully about what she says but I think that your DD will have such a boost from being with friends and it is important for her confidence. I think we are all given so much advice that it is a case of sifting through it and selecting what is right for your DD. Everyone is different and what suits one doesn't suit another although there are obviously general rules for all. Hope your weather is picking up a bit, at least it isn't raining here atm.

Nickschick, have been thinking about you and hope Sam is benefitting from the break, let us know how he is.

Hi to everyone else.

Well maybe you could visit your brother some time when we're there, 21again!!

When are you there?