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,
Never done anything like this before! Had this link sent to me by a friend and was so excited to read your posts. Positivity at last!
My DD was diagnosed in September (1st Dr visit, weren't we fortunate!) Dr Crawley visited 4 weeks ago and we have just completed 2 weeks of getting a baseline and reducing sleep from 20 hours to 9! Hard going, but threw ourselves in 100%. Yet to be convinced it has been worth it. We have had to have the local consultant visit to check DD ok after a big choking episode due to not being able to swallow.
We have given up on education (yr10) after being treated really badly by the school. (not believing us and actually implied that I had written the consultants letters myself!)Home tutor now in just for 10 mins lessons twice a week as that is all DD can cope with.
Hope it ok for me to join you. Support would be fantastic.

Hi everyone
Good to see you are still posting!
Dd and I have been to gym this pm - she asked to stop afetr 15 mins but then enjoyed messing in pool.
She had 3 weeks of relative wellness - not so good this week but she is working now!
Hi esp to pao - sorry to hear you have had such a poor reaction from school. That is bad. My dd's school have made such a difference to how we have coped.
In my opinion, you are wise to not stress about education (and I am a teacher!!) Dd's consultant said to treat child holistically, and school was big prob so when we removed that as a stress - trying to force her to go, life became less stressful and dd was much calmer. She has told psychiatrist that she feels believed - very hard to get to that point but worth it. As she has felt better, she goes to school a little bit and has started to do a bit of work. She has had to cut back on gcses but I am optimistic that she will get them and if she does not, then we will think again. It is not end of world and she is coping with cfs and IS getting better. My dd's consultant went into school to explain - is that an option for you?
Hi also to Noonki - good to hear from you and v helpful comments. How are the rest of you and your dcs? Please keep posting - sorry I have been quiet!

Noonki - thankyou so much for your post and it is interesting to read about the wheat intolerance. Another mum who I have been speaking to in RL has a DS with cfs. She tells me that apparantly at GOSH where they have a CFS section they insist on a test for wheat intolerance as a matter of course. It appears that many of the symptoms are the same and it is obviously worth looking into.

Welcome positiveattitude - it is good to hear from you and I am sorry that you are having to go through this. CFS is a dreadful illness and it is hard to watch anyone suffering in this way.

How did your DD's illness start, was it a virus like so many seem to start with?

There is a lot if information on this thread and we have come a long way. My DD is much better and coping with much more now, but I can still see some symptoms in a small way when things start to get on top of her. I am still thinking very seriously about Lightning Process if what we are doing at the moment doesn't work. Optimistic's DD has had fantastic results - see earlier posts, and my sister has a friend who I keep in contact with and she has had the same good results.

Keep posting on here as it certainly helps to talk to someone who knows what you are going through - it has helped me a lot.

Dwardle - good to hear from you and I am so glad your DD is starting to improve.

Hi, thanks for the welcome.

I totally agree with you, dwardle, about easing off on education. It certainly took pressure of all round, although I am still trying to have a little communication with staff so that if DD returns there it should ease things for her.

21 again - As you said, yes, DD's CFS has been tracked back to having glandular fever in June last year, although we did not realise it was GF at the time. She appeared to recover from that, but as soon as she returned to school in September we realised that things were not right. Slippy slope downhill since then, unfortunately!

It was so good to read through all your posts. I found it really encouraging that your DC's had improved and you are so positive about their progress. I know it is difficult, but I really do not want to get trapped into being negative all the time, or accepting of how things are going to be for the next few years. We know we have a long road ahead, but one step at a time!

I would really appreciate any posts here!

Hi Positive - My DD is doing really well having been ill since Christmas 2007. She has not had a relapse since January this year. I think some of the basic things I have learned -which are probably common sense anyway - are if DD gets a viral infection she takes longer to recover than others, not to have any vaccinations while they are recovering from CFS, and keep a daily diary. The diary proved invaluable to us at the end of 2008 and we were able to pinpoint stresses that we hadn't thought of when we compared with our calendars. We also used the diary to note down DD's symptoms so we were able to see where the improvements were.

We noticed a big improvement when DD started sleeping well at night, and that came after a couple of CBT sessions.

It is so hard to stay positive all the time and this illness affects the whole family. We were lucky that our elder DD was marvellous with her sister and made a point of going straight into DD2's bedroom to chat about school every day. She also used to do her homework in DD2's room. It was company for DD2 and also gave me a break.

Does your DD have good periods when she feels relatively well or is she bad all of the time? It seems that no two people are the same.

Good luck and keep posting...

Hi,

Thanks for the encouragement. DD has just completed the sleep reduction over two weeks. I had expected her to be feeling better at the end of that, but the improvement was not as good as I expected - I think my expectations were too high though! Now she seems to have an endless day of boredom. She says she wasn't bored when she was asleep all the time!!

DD is bed/sofa bound and has not stood on her feet now for over a month. She crawls to the bathroom, but has just started not being able to use her arms to lean on while crawling, but just goes on her knees. We are having to feed her and she can't really do anything!!
BUT she is very positive and really wants to get better, although I am beginning to think this could be more that she is finding it very difficult to accept that she is ill and will not wake up tomorrow morning and be absolutely fine. I think she will need help to get her head around this before too long.

We have got a carer coming in so that I can keep working, just a couple of hours 4 mornings a week, but this is really helping to keep me sane. I have been so fortunate with the medical team, but I am fed up of having to fight for what is best for DD with everyone else. I feel as if I have to be very assertive to get anything done, then feel guilty about putting my foot down, or guilty that I have let DD down by not getting what she needs!!

I am so encouraged that your DDs are getting back to school and improving. Light at the end of the tunnel!!

Thanks.

Hi positiveattitudeonly .......I am on this thread but havent checked in lately what you say about your dd could be my son too but he has very high fluctuations at the minute hes doing ok but i cant plan for tomorrow cos tomorrow he could be stuck in bed unable to move .

Just to let you know we do truly understand how you feel-keep posting cos the support on this thread will help you no end.xx

Hope everyones ok xx

Hi Nickschick - good to hear from you. I know what you mean about not being able to plan anything, we were like that for a long while and we still don't plan anything that can't be cancelled! Last time we "spoke" Sam was looking forward to the Easter break - how did that go?

Positive - presumably Dr Crawley has put you on to a pacing programme and explained it all to you. How is your DD coping with that?

I know how hard it is not to worry, but I have a friend whose son was in bed or on the sofa for three months with cfs. He is now completely well and living a normal life. Your DD will get better but it is difficult to be patient. Have you looked at lightning yet? It is the one thing that gets quick results but it is expensive.

Hiya 21 again xxx

Sam was in reasonable health over Easter and as far as we knew was doing well with his school attendance (bank holidays and appointments were meaning he was having a shorter week) well now it transpires hes been sleeping with his alarm when we thought he was upstairs reading or playing on the x box so basically hes trying to 'hide'- but if thats what helps hom cope -so be it.

What I am dreading is next school year he will be year 9 and they are choosing options a year earlier this time and so steptember will be the start of GCSE time for him and I really dont know how he will cope.

Ahh well we live and learn and what doesnt kill us makes us stronger,is everything ok at yours still?

\o hi Dwardle and everyone else x

Hi All,

21again, thanks for the comments. Re the pacing, We are trying to get a stable baseline at the moment. I think we are about there, so looking forward to being able to increase gradually. Were you as strict with it as Dr Crawley advises? I can understand the theory behind pacing so we will certainly try our best, but getting as strict as counting steps and increasing things by 1 min seems a bit extreme. I know we are going to have a problem being patient with the progress. We are used to living life a bit in the fast lane and have to get used to crawling along on the hard-shoulder!!!

Really not so sure about the LP. Very interested to learn more about it and I am not questioning other people's positive results, but not sure it right for DD. We also have a location difficulty, but if things don't improve with the pacing I would like to think we would be open to anything. DD is dyspraxic/dyslexic, would this affect any of it? Just wondering as it is all to do with pathways in the brain isn't it? Sorry, may be a dumb question!

I love to read your posts about your DCs attending school and improving. Really encouraged that this will be us hopefully soon. Realistically, maybe this time next year.

A few good points about DD being ill is that she seems to have done a lot of maturing these past few months. She is more patient than she used to be and more ready to apologise when in the wrong. I think it has bought us closer. It has also sorted out the "good friends" and those that I would prefer she was not so good friends with, who have not contacted her at all.

Anyway, must go and do sandwiches for the family.
Hope you all have a good day!!!!

Havent posted on this thread for a long time, but I have lurked from time to time.
Positive - the similarities between your DD and mine are many. She is now 17 (would be Yr12) and stopped going to school in Yr10. This time last year, she was unable to walk ..couldnt even stand and, also the arms werent to good. We moved her bed downstairs and were fortunate to acquire a wheelchair through a friend to take her to the loo. Dr Crawley visited us at home last June and we started the pacing regime. While I can't tell you everything is back to normal, there has been a vast improvement. She can now walk around the house normally, we have moved her bedroom back upstairs and she is much better in herself. Unfortunately, we have not yet managed to crack the going out part of things, the maximum she can manage is about 10-15 minutes "walk" or drive but we will persevere. We still have to be massively careful about not overdoing things and that will get harder, not easier, as she gets better. So be positive (like your name). Is your DD a member of AYME - it is good when you are in this position to have the support of other young people in a similar position. Happy to talk further if it helps.

Hi Everyone.
Good to hear from you chocaholic
Message esp to you and to positive but also to others. One Mum I was put in touch with had two dds with cfs - one after the other. One was really bad - bed bound , but both now in early 20s, well and with great careers - one a doctor. It will get better - but does not always feel like it.
We have found the Cognitive Behav Therapy very helpful. DD goes on her own, which I think helps her feel in control. CAMHS have also helped guide us in the way we deal with things - helped me to maybe step back a bit - see earlier posts from OM about this.
With the boredom, could your dd try talking books - poss download from itunes into ipod? My dd says there are lots - quite pricy but.... My dd has lots of films and stuff on her ipod which she enjoys - she also had a Jane Austen phase and watched them all back to back! ( you can buy a prog to convert dvds to itunes)
When my dd said she was bored, it was progress as when she was bad, she would just sit there for hours
This thread has kept me sane really.

Thanks Dwardle - going on from what you said re audio books, I had forgotten (shows how quickly you move on) but certainly where I live you can get exemption from the libraries from all charges if you are housebound. I used to get audio books for DD, usually stuff she had already read as her concentration was so poor and also CDs. Definitely worth checking that out.

Hi all. Sorry I haven't posted for a while but it is good to see our wonderful thread still going strong!!!
Nice to meet you, positive!
I feel for you, I really do. It is so devastating having this illness in your family and as a mum used to living life at full speed it is so difficult to adjust to isn't it and so BORING!!!!!!!
I am going to tell you of my experience and the rest of you please excuse me and hop over my post if you don't want to hear it again!
My DD was ill for 2 years. We were lucky. We saw Dr Crawley after a year. Yes you have to follow the pacing prog exactly as prescribed.
It worked well for a while but then my DD got stuck and that became a big problem.
She hated pacing because it made her focus on her illness 24/7 and eventually refused to do it.
After a while we became desperate so looked into the Lightning Process.
The catalyst was the prospect of home tuition which she did not want and a conversation I had with another mum in RL who had been through LP with her own daughter.
You are right - it is something you have to 'come to' in your own time. There is no short cut through to it. Keep it in mind though is my advice.
The website is lightningprocess.com and there are now trainers around the country - you don't have to see Phil Parker to get great results.
My daughter?
Well, she was down to 10-20 per cent of school but stuck, stuck, stuck. She was desperate to get better.
We did LP on 2/3/4 March and she has been to school 31 out of 35 days full time, does horse-riding once a week and tap once a week. More importantly,we have our confident daughter back.
It is not a miracle 'cure' it takes hard work and persistence but nor is it some sort of Voodoo in fact Professor Findlay is doing a research paper on it as we speak.
Our trainer sees many bedbound patients and gets good results so it is not just for mobile sufferers.
I apologise if I sound evangelistic about LP. I am, as our DD's recovery has been spectacular and I wish the same for everyone else. I do understand hesitency though as I was the same - it's a natural response to something that seems too good to be true. However it is true!!!!!
Good luck to everyone. All the DC WILL get better which ever 'method' you use as it is impossible for 'natural' things to stay the same, we change all the time. Keep them positive and try very hard to counteract the loss of confidence in their physical abilities.,,

Optimistic - It is good to hear from you and good timing if I may say so. I have been in contact with our local LP practitioners and am slowly starting to get the ball rolling on this.

DD has been very well, but as we are increasing the pressure on her bit by bit, we have noticed some worrying symptoms over the last two weeks. She was nauseous, shaky and dizzy yesterday and is at home today, but having said that she seems totally fine today. Other symptoms have been headache, stomach ache, tingly hands ( which usually go with a migraine, and a couple of bad dreams which disrupt her sleep.

To be honest the symptoms are not bad and they all go quickly, but she has been symptom-free for several weeks now and the only explanation seems to be stress. My biggest concern is that if DD goes for LP but at that time has no symptoms to work on what happens? I know the practitioners will answer all of this but wondered what your thoughts are.

Glad to hear your DD is well

Hi 21again. Sorry DD has had a few symptoms. I think my answer would be to say all of the above to your local practitioner. Get his/her view on it all and mention your concerns. In my opinion your DD sounds 'almost there', but would benefit anyway from knowing how to deal with any symptoms that come up in future.She is still near enough to her illness to be able to remember what her trigger thoughts are etc... How does she feel about LP? Does she want to do it? To be honest unless she really wants to go the LP prac. won't take her on whatever you want. My DD had to be assessed and had a private phone call to make sure I wasn't 'pushing' her into it iyswim. Also we are at a good time of year and she may be fine until the autumn/winter and then benefit hugely from what she has learned.
It's great to hear from you. I'm watching but sitting back a bit on the thread as I am very aware that LP is not for everyone and I don't want to hijack the thread

Hi there,

Thank you all for posting still. When I joined you I thought you may have all moved on and wasn't sure that i would get anything, but am encouraged by your positive attitudes.(hence my name!!)

Dwardle, thanks for the info about the audio tapes. I am off to the library in the morning to see what I can find out!! My DD is very dyslexic and had not read a book ever before she was ill, but started reading a lot over the past few months! One positive to come out of all this , only to have Dr Crawley say that it was too high energy for her to read due to her dyslexia!!!
But hopefully the audio tapes may be a way of encouraging her "reading" in another way until she can read properly again.

Opt.mumma, thanks for the welcome. So good to hear how things are for your DD. Please don't think you are being "evangelistic" about LP. It is good to hear, and then make our own minds up, surely. Pacing had been going ok this week (only 1st week!!!! but so far so good) until a friend came round today, probably stoppped a bit longer than she should and DD was totally exhausted when she left. (had a little nap, saying Dr Crawley won't see me!!- only a little nap 15 mins tops, honest!!!)

21again, sorry to hear about your DD having symptons. It sounds as if she has come so far! Hopefully just a little hiccup on the way!

Hope you all have a good weekend.

Positive - great to hear you sounding upbeat!! I'm glad pacing is working, I'm sure it will and it did for us. What really helped me and therefore DD and rest of the family was having people who understood and also to keep trying to do things to help my DD. We did all sorts : acupuncture (which I still think is a great reliever of symptoms particularly headaches), herbal remedies, CBT type counselling to name a few. It helped me to feel I was doing something pro-active. Try to stay upbeat - you and your family will crack this it just may take a little time and trust your instincts. I'll be thinking of you..

Hi OM
Please don't stop talking about LP! You are not hijacking thread - it is very interesting. I think that our dcs have to be in the right place for it - as you say your dd was.My dd would not have been up for it a while ago, and was very low but I think my dd's attitude about her illness is really changing at the moment and I will be revisiting website. Am very interested in the research - do you have any more details?
Were the 4 days your dd missed school when she had that awful cold - and recovered
Positive - hope the talking books are helping. My dd is an avid reader but when she was at worst, stopped reading totally and then went back to old, easy girly trash. She is now reading again! Advice was that mental effort was as tiring as physical - which is partly why she ended up not doing any school work either.But time moves on and things change! She is doing a bit of school now and is living again!

Hi Dwardle - thanks for your post. I don't have details of the research but it is mentioned on the website and there was info in the GP pack we were given at the end. Unfortunately, I gave it to the GP!!! Yes, DD had 2 days off with the cold and recovered and has had 2 off this term and recovered!! Each time she is 'normally ill' I hold my breath...I think I will until we have more clear space between us and the ME. Glad to hear your DD is making progress, and how are you?

Hi all or anyone,
Could I ask you some advice? We have been doing this pacing programme now for 3-4 weeks, but DD still seems to be going downhill. I thought that with pacing she should be "static" then increase gradually. Does this mean that we have not got a correct baseline yet? Do we decrease activity again?
Bad weekend and bad today.
This does not really feel like an exact science, but a bit hit and miss and I think we are more missing than hitting at the moment! I would really appreciate any info you can pass on to me. Thanks.

Keep positive, Positive!
I know you are going through a really bad time right now. Everyone on this thread has been where you are - just look back over the posts to see.
On the practical side. If your DD is still going downhill then in my experience you have not got the baseline right. As I remember, you have to manage the same level of activity for 4 out of 5 days - ish. Probably there is not enough 'yellow' and 'green'. But, no, it is by no means an exact science. The other problem may be that your DD is doing too much 'red' in one go without interspersing it with yellow/green.Did you make the cards as Dr. Crawley suggests. This is important I think. Really, pacing is like a very,very strict diet. You sort of think you're doing it properly but are you really???
I hope this is helpful.
We are all here for each other so keep posting.

Thank you for that Optimistic.

When Dr Crawley came she concentrated more on the sleep reduction timetable. She did explain about the pacing, but either I have forgotten or she did not really explain about the cards. Is there a website which explains it all? We are also a little lost on what "activities" are allowed in yellow and green time. All we seem to remember is all the "Thou shalt not" s. By the time we had got through all that lot our brains had turned to mush!

An added problem was that Dr Crawley came the day before the Easter hols and gave us the plan, but due to some family being away and having 4 other children we agreed with Dr Crawley that we start the programme when the other DCs went back to school 2 weeks later. During those two weeks DD took a quite drastic downturn, so where we were starting from was not where the pacing programme had been set from. Do you get what I mean?
Pease don't think I am making excuses, we really want to do everything possible and get it right.

I think we need to get a proper plan again for where we are now. Will get this sorted asap - note to self!
Local consultant on holiday til Monday, will call her then.

Thanks again. Really good to hear that there is light at the end of the tunnel. Pleased for you that you are seeing more light now!

Hi positive.
I think there is some info on RHRD website under CFS/ME, but why don't you ring or email Dr Crawley's secretary - I would!
As far as activities are concerned:
Red - reading/TV/friends/ arguments(!)/computer/schoolwork/exercise etc etc. As my DD said anything that makes life interesting!!
Yellow - what we called basket-weaving activities! Therapeutic stuff that they don't have to think about: flicking through mags/drivel TV nothing brain-engaging!
Green - Prescribed rest ie chill out time. Relaxation tapes or guided imagery etc.
Blue - sleep!!
I hope I've got this right but I'm sure someone will add or correct me if not!
The cards were for agreed amount of time for things cut into chunks. If your DD can have say 2 hours of red you could make cards with 15 mins duration (ie 8 cards x 15 mins) on and post them when they're used up. Do same for green and yellow. That way you keep it strict and cut down on the arguments. Did Dr Crawley give you an activity diary chart thing?? If not ask for one may be.
I'm sure you are doing the best you can I didn't mean to sound bossy or unsympathetic It is really, really hard and I understand, I really do.It is hard on the whole family. I have 3 DC and it has been so difficult for my boys but keep going.
Hope you have a better few days. Keep posting and I'm sure the others will post soon too.

Hi optimistic,

You did not sound bossy at all!! I appreciate your advice. Just sent an email to the Bath team email I have, so see if I get anything back.
We did not seem to have grasped the "cards" idea, but just spoken to DD about the concept and she positive about giving it a go.
Just want to stop this downward slide!

Just shuffling on her knees to the bathroom and having shower has done her in for today! No way she will do all her allocated "red" time today.