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!

Hi all - just 'popped' home overnight to pick up DS1 GCSE results tomorrow I;m more nervous than he is!

21again - thank you for your lovely comments regarding my DD - we really enjoyed meeting you too!

Positive - so sorry DD is feeling so bad and that you were put in such a horrible position. You know what my advice would be don't you????

Calgal - welcome to mumsnet. I'm so sorry you have CFS/ME and I don't envy your situation one little bit.
I am going to recommend that you do the Lightning Process ( Google: Phil Parker + Lightning Process). Two of the DDs on this thread have done it with excellent results. Don't be put off by the 'cagey' feel to the website or the 'evangelical' type videos. I do also have a step brother who has ad CFS/ME for 25 years. He is doing LP in Australia in Sept on the back of my DDs results. I thought he was funtioning perfectly well but evidently not. I will let you know how he does. Also, when my DD did LP the others on the course were adults. We regularly see one of them who is also now completely well. 2 of the 3 others are better and one is not.
It is well worth looking into and I cannot recommend it enough! HTH

Hi to everyone else on the thread!!

Hi OM, waiting for GCSE results for DD2 here too.I am up and pacing the room, she is asleep and says she will go when she can be bothered to get out of bed! I'd be knocking on the school door to be allowed in a first light! It's either going to be a good day today, or totally rubbish. Today determines what she does next year. A lot rides on today! gulp, gulp, gulp!

Hugs to all.

Hi Everyone.
Just read through all the posts - dd is up ready to go into school to get module results for things she learned/ revised at home in the main. I think that passes will really boost her confidence so am really nervous for her! Try not to worry about yr dd too much
What happened about swine flu? Feel like I have been away for ever!
Will be back later

Hi dwardle. Good luck with results!

Swine flu turned into chest infection for DD3 and she still suffering. I have also had the panic moments of thinking that it has been going on for so long that it could lapse into CFS. I know this is irrational, but this was just how DD3 started. But no, she will be better soon. Luckily, I think she must have been at the contagious stage whne she was away as no-one else here has had anything, but out of the 130 people she was away with a HUGE percentage have been ill!!! or sorry that was cruel to grin, but just self preservation!

Hi all, going in for results soon, it really is nerve racking isn't it? DDs have been with grandparents this week so we will meet them at the school in a while. Good luck to all our DCs they have worked hard and deserve success .

Can't stop now will be back on later, love to everyone.

Hope you all had good news today. Is everyone being shy and not wanting to say what they have got? Very proud here. DD2 got 8 A & A*, 3 Bs, and 2 Cs.
Also had good news about DD3's education. The head of the specialist unit has said that she will sort out a plan for her and she will be able to go to the unit. We have a meeting to sort it all out on the 7th and she will start 1 hour a day on the 8th. All looking good!!
I am slightly nervous about her return and although trying to be positive I am also wondering how she will do and how long she may last.

Hope you have all had good results and good days!

well done to your DD2 Positive and brilliant news about the unit for DD3. You are very fortunate to have a facility like that I think. My DD got an A in the GCSE she took. She used the NEC for materials but was basically on her own with a bit of help from DH where necessary so we are well pleased.

Fantastic results Choc and Positive, and thoroughly well deserved . Positive that is such good news about DD3, hopefully this will take some of the stress away and she will start to feel better again.

DD1's results were great - 5 A*s and 5 As, and to celebrate, she and three friends are at the Reading Festival this week end (an early birthday present from us). We are very proud of her, she has worked hard .

Positive - that is wonderful - well done to your dd2
Brilliant news about dd3's place at the unit too. Try not to worry too much - I think we have all learned that we cannot control cfs or our dcs!!!She will go when she can and that will be a start.
Well done to yr dd too - Choc - that is a wonderful achievement.
DD got results for 4 modules - 3 science and a maths. She got 2 bs and 2 cs so am v pleased for her as she hardly went to any lessons. She was esp happy as some of her friends got same grades as she did so she felt one of the gang! She has put all her work in order today ready to get some coursework done!
OM - when do you think you really accepted your dd was better?
Hope your other dd is starting to recover, positive.
I did feel for you about the carpark. Just remember that some people are vile. I think LP would suggest that you choose to ignore them!!!! Is dd okay about it all now? How is she doing this week?

have you thought of anti virals such as ldm1oo oreganol oil olive lead extract raw garlic engystol heel or a homeopath
such as chris boardman at the rosedale clinic he is also i think in oxford part of the month he had healed bahavioural children to pms a mind of information and has been practising since 1979..

Just googled the Rosedale clinic, it is an interesting read and obviously one of many alternative clinics available. I guess different herbs will be appropriate for different people if they chose that route. I think we all take the view here that certainly alternative therapies have a place in the healing process for CFS and obviously for lots of other illnesses.

Thanks for the information Pushkar, it helps to be armed with as much as possible .

Hi to everyone - not long before most of our DCs are back at school, good luck to them all.

hello all Just caught up on your news. Well done on the great results in GCSE's and the increased energy of some of the girls. Great about the specialist unit positive. We had a good time away , although as you'll all understand , a bit sad too, as it certainly wasn't like a "normal" holiday. I guess this is our normal now. Travel etc was too much for dd so we had a big bust day on day 3, however after a few days where she didn't leave our tent, or pitch things got a bit better. It just meant that we did a lot with me at the tent with dd whilst dh took the others away to swim/ beach/ bike ride etc. Hard, but still good to have a change of scene. Now trying to clean house that was re-wired while we were away, and get my head around how this term will work . Gotta go and finish the cleaning ... I certainly know how to have fun on a Saturday night

Katsh - good to hear from you and I am sorry DD had a rough time on holiday, but glad she picked up after a few days. It is difficult to deal with and sad to watch them missing out on so much - we have all been there. Do you have a pacing programme recommended for DD, and are you trying any alternative therapies at the moment? On the cleaning front - it's a pain to arrive home from a break and have to start cleaning like that!!! Hope you are finished now .

Hi Katsh, good to hear from you. I hope DD has survived the travel home better and can have a restful few days before school starts. Just a tip, not sure if the others would agree, but I would say, don't expect too much from attendance at school. It really doesn't matter if your dd doesn't make it a lot. It is better to get her health sorted than to worry about attendance figures. Education can be sorted later. I know I am probably being very hypocritical as I spent the most of last year worrying about DDs lack of education.

Big busts here!!
DD has crashed big time and didn't even do too much to explain it. A bit concerned that this could be how we go for a while. She is absolutely adamant that she is going to be going to the education unit, but i am worried about her pushing herself like she did last year to try and prove that there is really nothing wrong with her. Hey, Ho!! Another frustration. I have to admit i feel a bit resigned to it all a bit more now and am not fighting it all.

Enough waffle from me. Hope you are all doing ok and have had good holidays. We don't return to school til 7th here, so one more week of lie-ins and stress-free mornings!

Positive - I am so sad to hear about DD's relapse, we never quite know what the triggers are. It's as if the stresses that DDs have to face are being stored somewhere but not dealt with, then something apparantly minor can come along and tip the balance and the body reacts in the way it has become accustomed to, i.e relapse. That certainly seems to fit the bill as far as our DD was concerned.

The unit sounds great and DD doing one hour per day hopefully will be something she can cope with. This can then be increased by little amounts once she has proven she can deal with it and shouldn't put too much pressure on her. I hope she picks up over the next week, just give her lots of TLC and tell her we are thinking of her . She sounds very determined but don't let her push herself too much.

Hi all.Just got back from suffolk last night so no time to post. My DS got 8 A* and 2 A. Also A,A and D(whoops) in AS maths. Will retake the D. We're v. proud of him. Well done to all the girls. My DS will be very jealous that your DD is at Reading, 21again, as he is wtching enviously on TV as I type.
Am so sorry about the relapse, Positive. At the risk of sounding like a broken record will you not consider LP?????
Dwardle - I am beginning to trust that DD is recovered 6 months on from LP. I am sure you are wondering how your DD will get on for the new term. All I would say is she is bound to get ill at some point when she is around bugs and stuff but you mustn't panic and presume that she won't recover. I also feel a tiny bit anxious about DD starting the new year ...
Love to everyone else on the thread.
Enjoy the remnants of the hols.
xx

Hi Everyone - another grey and damp Bank Holiday here!!
dd is off to my brother's this eve - she is staying there to do her work experience that she missed back in May. Then off to school next week. She has been doing work too for last few days.Yes, OM, I am anxious but am trying to hide it from dd!
Congrats on the great results for your ds- wwhat a star!
Oh, Positive, I do feel for you and yr dd. Totally agree with your comment to Katsh re school - also speaking as a teacher, Katsh - just let her go at her own pace. Same applies to your dd, positive Your dd is just doing what my dd did pre LP - going on well, then a crash. I suspect this is what dds of others have been like too. 21again - how is yr dd and how are you feeling about the start of the new term?
The one thing about LP is that I feel dd now has strategies that she can use. We will see.
How is yr dd, choc? Can you see progress from the Perrins now?
Take care, everyone and keep posting.

Hi all - DH has gone to pick up DD1 and friends from Reading. They had an "awsome" time (seems to be the in word now)!! Meanwhile I have the computer to myself for a while so can read at my leisure.

DD2 goes back to school on 7th so a few more days to make the most of. I understand there is a sleeepover planned at one of her friends' houses but haven't had the details yet. She is well and looks fit and healthy although she hasn't done much physical exercise this Summer. I feel she should be able to cope, she is a different girl to when the CFS hit her. She was a very good cross country runner and consequently looked like a stick insect with not an ounce of fat on her body. Having obviously given up the running she has filled out and looks a far better shape and much stronger. Her rate of growth has slowed down and I think that has helped her to build strength also.

As far as she is concerned she is better although who knows how many niggling doubts there are lurking. I wish she had the tools that LP teaches so that she could deal with any symptoms that may rear their ugly heads, but, as Optimistic rightly pointed out, people do get better without LP and so why shouldn't she? I find I am quite looking forward to her returning to school simply so we can find out how she will be.

Dwardle - excellent news about your DD and her work experience, she is doing so well and the longer it goes on the better she is coping .

Positive and Katsh how are your DDs and Choc is DD still improving?

Hi everyone
Good to hear your news, 21again. Yes - people do get better from cfs and your dd sounds like she is very well placed to have a great start to the new term. I am sure she will be fine and will go from strength to strength. It is interesting to hear what you say about her body shape changing - does she do any exercise now? My dd is supposed to be coming to the gym with me but....!One of the downsides of feeling better is that she is becoming more teenagerish! Ah well.
How is everyone?

Glad everyone is doing so well. Interesting about the body issue. DD was a competitive ?spelling? swimmer and was really broad and muscley ?spelling again???? She is now scrawny looking very thin. No clothes fit her, so a whole new wardrobe appears to be needed.

Its crap, crap, crap here!! DD is really struggling. She has not beeen able to go out for a week again now. She is struggling to walk at times, but is so determined not to go back to the crawling and having to be lifted. She would rather not eat than be fed again as she was 4 months ago. It is so much harder the second time around, as I know how bad it can get. I know we will cope if it gets as bad as it was again, but I really don't want to have to. When your DD's relapsed, did they go back to their worst, or did they not? I have mentioned LP, but a very frosty reception from DD. I know that she needs to be 100% convinced, or there is no point. I think the location here could be an issue, how do I find out if there is a practitioner here? We are quite limited by water issues if you get me! Come and help us smile again, please.

Am gutted for you.
Wonder - could our dds help at all? Mine is away just now but am sure there may be a way of getting them in touch. Could Optimistic help here?
We all know how you feel and have been there with our dcs. I still do think LP is worth looking at - the website has a practitioner finder.
Anyone got any other ideas to help?

Thanks dwardle. I have looked at website. No practitioners here. There is one that would be ok if we stayed overnight in a B&B or hotel or something. But this adds a lot of other problems with 4 other DCs to consider (+ work, but that could be sorted)

My heads gone into a bit of a spin at the moment and I am back to having sleepless nights worrying about her again. We had a good few weeks and I know we will again.
Thanks again. I am pleased your DD has done so well and is now being a normal teenager!!

one thought - dd's course was only 10am-2pm. Any help?

Positive - I feel so bad for you all and I know exactly how you feel, it was the same for me whenever DD relapsed. I used to allow myself to think that she was better in between each relapse (why wouldn't you?), only to feel completely knocked sideways by it all again. After a while I think I got more used to it but it was always hard to deal with.

I understand the difficulties regarding LP living where you do but, as Dwardle says, look on the map on the LP website and you may well come up with something close.

Wasn't it you who told us about your DD reacting well to the faith healer? Forgive me if I am wrong, I've tried but can't find the page right now. Maybe if that is the case then you could contact that person again for help.

None of us can predict how this illness will pan out, it is as individual as we all are, but your DD will get better. You have seen the light at the end of the tunnel but haven't reached it yet. Try to stay strong for DD and I am sending you some very heartfelt (((hugs))).

I hope you are not suffering too much from lack of sleep, it is awful laying awake worrying and things always seem so much worse at night, (I know, I've been there the last two nights but that's a story for another day).

Thinking of you today and will be back to check for any posts from you later on, take care..

Positive - so sorry you are feeling so bad . Could my DD help by getting in email touch with your DD? I'm sure she wouldn't mind. Also - have you thought about one of the residential courses. Your DD may well be frosty but you could still do all the groundwork/ get the book/ load up the video clips etc etc so at least you would feel you were doing something. Can I ask you why she is so 'frosty' about LP? You may just have to keep working on her. She may well come round if she doesn't get better quickly by herself. Atm she probably feels she will be better soon and therefore doesn't need the help.

Take care of yourself, Positive. Things will get better for your DD and you. It's just sh** when she's been so well and you've been used to a more normal life.

Dwardle/21again - hi