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!

OMG I was only offline for one day and so many posts to catch up with. I went to Wimbledon with a friend and had such a lovely day but we went in for a cup of tea and completely missed Venus' match!!!!

My DD was the same as most of your DCs in that she never told anyone what was wrong with her and I think it seems common for them to be in denial. As soon as she felt better, then for her that was it and she was never going to be ill again, which probably meant more relapses than if she had taken things easy. Nickschick I agree with Optimistic that because lightning is quick it may well suit Sam. I really hope he does pick up, he has been suffering for so long.

Dwardle LP on Tuesday!!! I shall be thinking of you next week and if I can possibly get online out in Portugal I will do so. I just know she is going to do well .

Positive isn't it just brilliant that your DD went to the cinema? OK there is some payback but just for her to experience a little bit of normality after feeling so ill for a long time is the best thing ever. Your life looks so hectic at the moment and I am sorry DS is feeling homesick. He will soon be home and back to normal. Good luck with the CBT, it is quite a slow gentle process but DD has benefitted from it hugely and I hope the practitioner is better than the last.

Choc good to hear from you and well done to DD for doing the exams, she has also come a long way. I know very little about the perrin technique and am going to look it up and follow your DD's progress with interest.

Optimistic my DD like yours has been in a concert this week and had a very late night but has coped. It is so good to see DD singing again it is something she loves and has had to miss out on so many times over the last eighteen months. Do you know I have been re-reading some of our posts this morning and I can see how the improvements are all becoming apparent. Even Poss who hasn't been here very long has seen changes. It is so good to know that although the times are very difficult, they do come through this and it has helped so much to talk to others going through the same problems. This is a lovely thread and I hope there are others reading it who can take heart from it and maybe use some of our advice.

Katsh where are you? Do keep in touch.

Have a fantastic holiday 21again and thanks for all the encouragement.

One for Optimisticmumma but would welcome all views.
having really read the LP book, I am seriously wondering whether I should be taking dd to a conference on cfs just after she has done the process - I think not and am wondering whether to use train tickets to have a fun day out with her instead. What do you think?
Pos att - great start with school - well done.
Interesting you all saying your dcs in denial - my dd has really accepted it

Dwardle - in my honest opinion - no. I really don't think she'll want to go by then but yes have a fun day out instead. We can still meet up - and support Positive. I'm looking forward to meeting you both in RL. Shame 21again is away - she sounds so nice!!!

Back to LP. If all goes well the idea is you don't 'run' the cfs neurology so you have to stop all actions/thoughts etc that take you there again. You can't do both. You have to work with LP because that's what you've chosen to do.The conference will probably focus on symptoms and other treatments etc so what would be the point? That's why I was concerned about taking DD to GOSH. In the event because the consultant knew about LP he handled all the questioning wonderfully.

Hope this helps.

Love to everyone. Gosh, Positive I don't envy you this weekend!!
21again - you lucky thing! We went up to Wimbledon after school last week and had a disasterous time as the queue was so long. Last year it worked really well! Have a lovely holiday! Perhaps we may meet up at another time. I would be intruigued to meet you after all our posting!

Nickschik/Katsh/Choc - have a lovely weekend.

Optimistic's answer certainly makes sense to me. I would still love to meet up if you are around and hear all about it.

Thank you for your posts - really confirmed my thoughts and am also feeling pleased cos I think I am beginning to really get the idea behind LP - which is good!
Had an idea about a meeting place - what about John Lewis cafe? - or is that further up Oxford st than where Wimpole st is? My RL friend and I spend hours having deep conversations in the one we visit! I did live in London for 5 yrs but have not been to Oxford St for AGES so am a bit hazy about what is where. Can you help on this, OM?
I think dd and I are just going to have a shopping fest- her fave occupation when well anyway! So, meeting up for a coffee would suit us just fine. Sorry you are not there 21again
Went to see dd's consultant on Thurs. Did not mention LP... saving that til it has worked... but came away feeling quite positive anyway. He managed to make dd feel successful about her progress and normal about the bit that is still a problem, i.e. not getting to school because she feels too tired and lethargic.He said that feeling better on weekends and holidays was normal and that the mind was willing but the body wasn't yet but to look at what she can do, and has achieved - e.g. now usually sleeping, in control of panic, getting to gym or going for a walk to the shop....dd really picked up. I mention this because it really echoes what you have been saying in the posts about your dcs. The are making progress and it really helps to look at that. Was spec thinking of you, posattitude
Nickschick, are you able to do that with Sam at all? Katsh, hope that helps for you - things will get better.I am so with 21again about CBT. I did not go with my dd so it was private for her. Sounds like Sam might benefit from that?
Sun is out - hope everyone has a great weekend!

John Lewis Cafe would be a good idea as we would all be able to find it easily. Not sure either how near it is to conference but it can't be that far!!
Dwardle - part of the LP is 'brain rehearsal' which I think happens later. It deals with the areas in which we feel 'stuck'. For DD it was school. She could manage the rest and it REALLY helped.One other thing, don't be suprised if you come out of Day 1 still a bit hazy and DD doesn't 'get it'.You are taught the process in stages. It happened to us and we felt much clearer after Day 2. Day 1 is a lot of background info. Anyway, I hope that helps.

Positive - let us know about coffee at J L Cafe. It's easy to see the store from Oxford Circus tube.Also, you decide the time. I'll be coming on my own so I can always walk with you to the conference and we can get lost together!!!Just bring an A - Z!

Optimisticmumma - that was really helpful and makes sense. Trainer warned us that we might feel exhausted after Day 1 and also said it was loads of info. My dd's stuck bit is also school!

Ok J L Cafe would be fine with me. I have googled it and it all lokks quite straightforward. What could possibly go wrong????? My kids think it is totally hysterical that I am going to London on my own and meeting you! They have very little faith in my ability to make it without a disaster!
Conference starts at 12.15 and looks like it is just around the corner (ish). I would prefer to leave myself enough time to find out where I am going, rather than turn up late, so sometime between 10.30 and 11 would suit and give us about an hour. How does that sound with you two?

Another huge step here this weekend. DD went into town for the first time since October!! She was determined to go with her oldest sis and they had a lovely time and have left a huge hole in my purse! In my enthusiasm to encourage the outing I told them it was all on me. How can two teenagers spend so much in less than 2 hours??? Lesson learnt for me I think!
Crashed out now, but we are hoping to all go out for a meal tonight, so I hope she will last out and then we will be prepared for the fallout over the next few days. I know we are not supposed to boom and bust, but this weekend is a bit of an exception with everything going on here.
Dwardle - I will be thinking of you on Tuesday.
Choc - I have been looking up Perrin and also prefer the more logical explanation. Please let me know how it is going.
Hi to Nickschick and Katsh and 21!
Have a good weekend. Hope all your DC's are having a good weekend.

Positive - sounds good to me. 10.45 at JL Cafe it is! We'll show those kids of yours....

Hello all. I've just managed to read the whole thread . Dwardle, now that I know about LP, having read of optimistics dd I really hope that it is the way forward for your DD - sounds amazing really. Positive - having heard where your DD has come from it sounds as if she has made fantastic progress too. Nickschick, sorry that your ds is having a hard time.
School induction went well, as the school were fantastic. She only managed 1 hr - home for 1 1/2 hrs and then back for 30 min picnic, but she loved it. I met the SENco and the class teacher, and they are very relaxed about taking their lead from her come September. The class teacher told me that she's going to get cushions in her room so that when dd makes it to school she can rest on them whenever she needs to. The down side was that it was way too much for her and she had a terrible night with nightmares and was really unwell the next day - first time she's cried about being sick, and first time she couldn't walk . However it did get better and she managed into school for 1 hr on Thursday as well. Yesterday we went out for a few hours, and although I had to push her in a pram, she enjoyed the change of scene ( although looking rather grey again today).
Optimistic I'm interested in the referral to GOSH . We are not far out of London, and I'm feeling that I'd like to see a specialist team, as cslt has so far not been great. Her letter from last appointment arrived today, and is vague on diagnosis ( although she wasn't when we met), has said that we are doing elimination diets ( which she said we shouldn't do as dd eats so little anyway), and has forgotten that she was going to refer us to a dietician. Do I need to ask her to refer us to GOSH next time we see her? In your experience was that an awkward request to make?
I am feeling fairly confused by all the different possible approaches to take to this illness, and I just want someone to tell me what to do!
I got out for a couple of hours today and got my hair cut - it did great things for my sanity! Hope that everyone else is having a good weekend.

Katsh: You really have to push, but initially we saw Dr. Crawley in Bath because I'd heard her on the radio!! I had to completely educate my GP. He said to me 'I've never met a child with CFS'!! After a year we were feeling completely unsupported so went back to GP and asked him to refer me to a paed who was interested in CFS and had some sort of outpatients service. We went to a local authority in south London (not actually our authority but only 3/4 miles away). When our appointment came up I asked him to refer us to either Kings or GOSH. It wasn't embarrassing as we needed an outpatients. Can you be referred to a more specialist paed? Go back to your GP. Also make sure your DD has a coeliac screen.
I'm so pleased school have been good. As I said, as a Y3/4 teacher myself we really want what's best for each child. Just make sure they are kept in the loop.
Please try not to worry. Your DD will get better. She's so young it must be so worrying for you, but she will pick up. Look at CBT for your DD as I think it would work very well for a young child.
Good luck and keep posting....

Hi Katsh - what is cslt?

Just lost my post - grr
Was re-reading first two pages of posts - very interesting how far everyone has come since Jan.
Katsh - seems to me that it would be really good for you to see a consultant with cfs experience. Ours, by complete co-incidence as GP did not know, runs a monthly clinic for cfs and this is in a normal regional hospital, not teaching or high powered or anything. He has calmed us and been very helpful even tho he cannot fix dd! He got us into CAMHS v quickly, came to dd's school and explained lots. So, think it is worth pushing. The paeds at my local hospital knew about this guy - we got to them via A&E as dd was having such a bad panic attack, but we already had an appt with him.
Also, I do think from what you have said that pacing would help yr dd as she is clearly having boom & bust!
Choc - how is yr dd. Was thinking - when I have been to Osteopath, always feel worse then better! If we had had Perrin near here, would def have tried it as I know Osteopathy works.- from personal experience x3
Katsh - am so pleased you had gd experience with school.
Nickschick - how are things?
Hi to Posatt - hope the crazy weekend is going well, OM- see you next week and 21again if they have internet in Portugal!!!!

Are we going for the Coffee Shop on the fourth floor or the place to eat on the fifth floor? www.johnlewis.com/Shops/DSTemplate.aspx?Id=388 Sorry to be so organised!!
Did you say 10.45 OM? Sounds great to me! How will we all know who we are?

Oh no, just read your post and heart dropped to my boots! Please don't let me prove my kids right. How stupid to have two places in the same shop!!

No even worse! I have just opened the link and there is one on floor 3, 4 & 5! How greedy!! One of us go to floor 3, one to floor 4 and the other 5!! Only kidding. Glad I found this out now! I am not kidding when I say that I really am not used to travelling and never been to London on my own before. I know I will be a nervous wreck and that is before I get my head around meeting you two! I'll be the nervous one in the corner. Om did say 10.45, and that's fine for me!

I am excited for you for Tuesday, dwardle. Hope it goes well, I'm sure it will. Have been looking back a bit on this post and I think we are roughly about a year behind you-ish. Very encouraging to see how far DC's have come, but also made me wary of the Autumn, but then I feel encouraged that we will bounce back again, too. Bit of a roller coaster isn't it?

Great weekend here, but I have to say I have spent a lot of time in tears. I am a very emotional person and hate goodbyes. I feel wrung out emotionally and DD3 is not good today, but no surprise there. But so pleased she managed so much. Probably take the rest of the week to recover, but I know she will. Last emotional day is Tuesday when I say goodbye to DD2 & DD4 for 16 days and just a couple of days respectively. I have been banned from taking them to the boat cos they know I will embarrass them and will cry again. They love me really!!

Anyway this was only going to be a quick post. I think I am in danger of becoming addicted to this mumsnet thing! I always hated this sort of a thing with a passion until I joined this thread!

Have a good week, all.

So funny - your last comment is JUST what I felt until this!
DO NOT worry about London on Sat. Once we know which cafe we are meeting in, you just have to walk in the front door and ask the nearest JL assistant. They are the most wonderful helpful people on the earth and will tell you exactly what to do. I am glad I checked tho - must be my organising genes bbut even my small JL has more than 1 place to eat. We will be very sure which floor we are going to before Sat!
Sounds like you need a large glass of wine!

Shall we go to 'The Place to Eat' then,then we can't make a mistake!!!! How will we know each other? Um...let's hang around the entrance and have something in our hand like....a book, or something! There can't be many women outside the place to eat with a book in their hand, can there???? All the people reading this post but not contributing! Ha Ha!!
Positive - you are so right it is a rollercoaster and you can't fast track it in my opinion! Btw I like Osteopathy too but if you don't mind me saying there's nothing illogical about LP. It's just to do with brain rather than physical. That's all.
Dwardle - best of luck with LP. I'll be thinking of you. I know you will have success with it.

Love to you all.

My post has not arrived here, GRRRRrrrr, now I have to remember what I wrote! Right, can I just confirm, the ?place to Eat? is on the 5th floor, right??
Books at the ready!

Dwardle thoughts with you today.

OM ? Sorry wrong choice of word with ?illogical? I meant more mis-understood. Although I have to say that I have worked through more information on LP and have had a bit of a shift in thinking. It does make sense. I know I am a bit slow on the uptake sometimes, but I just like things that make sense to me and I am not good at grey areas where I can?t quite see it! A few weeks ago the more I read the more confused I was, but all of a sudden it does make more sense. I will keep on back burner for if we get ?stuck? at some point. Can I come armed with questions on LP on Saturday? Only simple ones??
I do agree with being unable to fast-track health. Unfortunately I am a bit of a fast-tracker and also I am a control freak, so having something that is outside my control and very slow moving is sooooooooo frustrating!!!

Mental weekend has come to an end. DD seen off to flight this morning. (lots of tears!!!) I am convinced this trip will change her outlook on life.
Anyway now that that is all over, I have suddenly remembered that I have parents evening from hell tomorrow evening. Trying to get all my thoughts together, be calm and prepared. We do have positives to say too, not just going to be moaning parents. Also been invited to a meeting with LA on Thursday to discuss education plans for next year.
I was most shocked to receive a draft policy document ?Access to education for young people with medical needs?. This is the one I pointed out that the school should have in December, and eventually received a copy with the apology last week. I have been asked to give feedback and thoughts on how the school can improve! My goodness, I cannot believe it! They have argued and argued and argued with me. Denied any wrong doing and have just been absolute idiots. I am not convinced that they will read what I write, but given this opportunity there is no way I am going to be quiet.
Hi to everyone on here. Hope DC?s are having a good few days in this cooler weather.

Positive - sounds like another busy week! But good for you to be thinking good thoughts about tomorrow. You do need to go and be constructive. If I were you I'd think about what you want out of each teacher. I started each teacher with ' I presume that you know DD has ME...' and took it from there! Good luck anyway. Look forward to meeting you on Sat, you can ask as many questions as you like!!

Dwardle - hope all went well today...thinking of you....

OM - thinking of you tomorrow - sounds like you may be getting somewhere. Also, whatever you achieve will not just be for your dd but all the other dcs that follow so you are a trailblaizer and a pioneer!
DD and I have had a wonderful day -we both feel so positive! Hard to explain but it all makes sense and is not whacky when you really get to grips with it.Can't wait for tomorrow!
Became an Aunt again today!

Dwardle - hurray!! For newborn dwardle and that you had such a great day! Good luck for tomorrow.

Greetings from sunny Portugal . Found an internet cafe 1.5 euros for 30 minutes. Glad to hear your DCs are doing well and I am thinking of you and DD Dwardle, and huge congrats on the new niece/nephew.

Shall get back on perhaps at the end of the week after lightning finished Dwardle so make sure you post with all the news!!

Positive it is hard letting them go isn't it? My eldest DD is going to Miami to stay with a school friend at the end of next week. She is flying with a couple of other friends but I know I will find it hard when she goes. You want them to grow up and be independant but when it happens it is hard.

Hi Optimistic - no need to ask how your DD is doing . She has been a wonderful example for all of us. Lightning is a big step for anyone and hearing about your DD's progress has made it so much easier to consider taking that step.

Have a great meet-up in London, I am quite envious but I shall have to console myself with a walk along the beach and a nice cold glass of wine.

Katsh glad you are still posting, you will feel so much better just talking to others.

Choc hope things are ok.

Bye for now, off to apply some more sun block!!!! (Sorry)

Nickschick - I didn't mean to forget you. I do hope Sam picks up during the Summer. I have really noticed how the sunshine has a very positive effect on my DD so here's hoping for plenty of that sun. Hopefully time out from school and a relief from stress will be a huge boast for him.

Hi 21, Don't get too sunburnt! And we will try not to get too wet!!!!

Have a fantastic time away, and I hope you all come back refreshed.