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 to you all, Just flying by to wish you all a good holiday. I hope the weekend was stress free, OM. You are very brave!

Hi dwardle, hope you had a good time away.

Where has everyone else gone to? Would be great to hear from you, nickschick and Katsch.

Hi Positive - I am still around. Hope you are all well and DD is continuing to improve.

DD2 has just left to stay with friends for the day and tonight. I know she will not get any sleep so have to accept tomorrow and possibly the next day written off! Would rather that than her not able to do these things.

I am interested to know what you all think of DH's ideas at present. He is convinced that part of DD's problem is getting up for school. She stresses about having to get up and so can't sleep at night and this adds to all the other stresses during term time and probably contributes to her being ill. This does make sense, but he thinks she should therefore not be laying in bed late in the mornings during the holiday, but should be up and have some structure to the day and not just laze around doing nothing. She on the other hand thinks the holiday is for doing nothing and so we have a clash. DH is worried that if she does very little during the Summer holiday she will find it too hard when she goes back to school. I know that normally the school hols are for relaxing and recharging the batteries but is it different for DD? What do you think?

I'm afraid I don't have an answer. If DD stresses about getting up for school it's because she hasn't been well enough to. It doesn't mean she won't be well enough to in future. I think you should maybe let her take the lead but make sure that the last week of the hols she has a 'practice run' .ie gets up at normal time for school and see how she feels. The 'stress' of getting up is 'ME symptoms' imo. If that is still the case in Sept you know what to do....You will have to explain that 'normally healthy' DC can get up, do get up and do sleep through the night even if they have had late nights/mornings and also manage if they haven't had a good night's sleep. It may sound harsh but you have to remember what your other DD can do. LP will deal with 'brain rehearsal' and it may well be that your DD is 'stuck' over school and will need help with that, but I don't think you can pre-plan this.

In Suffolk from the 14th for 2 weeks....

Hi Positive - how is your bit of hot paradise? Still in the micro-climate I hope. We all nearly got carried away here yesterday thinking that summer had arrived!!!

Hi OM - Micro climate of hurricane force winds blowing stupid drizzly rain everywhere, unfortunately!!!! Not been to the beach once yet these hols!!

Just a quick post, cos I am only for a few mins.

21 again - What you wrote about the mornings is very much along the lines of what Dr Esther Crawley spoke about when she came to see us in APril. I know our DDs are in totally different places with ME, but we were told that no matter what happens DD had to only have 9 hours sleep and always get up at 8am, even if she only got to sleep at 7! (at the time DD could do 20+ hours a night/day) I really believe that getting that bit sorted out was the key to everything else falling nicely into place over the past couple of months. This has not really happened through the holidays I have to admit, so hopefully we wont slip into the school problem in September too. Good luck if you decide that getting a teenager up in the holidays is the way to go! It would be easier if she agrees to it, won't it, rather than battling every morning!

Love to you all and DCs. now my signature!!!!

Thanks both of you for your answers, they have certainly helped. I think sometimes it is easy to lose sight of what you should be doing and why. DD went to a sleepover last night and they only slept for about 2 hours!! She has stayed awake all day and went to bed at 6.00pm, so I think a bit of a lay in in the morning and then continue as we have been. We are not getting her up really early atm, just not letting her lay in until midday. We shall see...

OM I could make 18th, 19th or 21st if you would like to meet. It would be lovely to see you, and I presume you would have DD with you? If you want to wait and see what the weather will be like that is OK by me .

WOW WOW WOW

I have just spent a day in Southampton shopping, shopping and more shopping with DD! Can you believe it??????? My feet are throbbing, my legs are aching, my purse is empty and I am ecstatic. Just 2 months ago DD had spent nearly 6 months crawling from bed to sofa and needed help getting on to the toilet. I am just so proud of her and how much she has done in such a short amount of time. Seeing how far she has come makes me even more determined to allow her to do what she wants to. If she starts to fall by the wayside, at least it has been worth it for days like today, and she will be as determined to get back to it. Not looking forward to CBT nex week! Another battle coming probably, but just to see her today, makes it worth me arguing, I think.

Hope you are all enjoying having "normal" teenagers too.

Positive - that's soooo great! WELL DONE for having such a lovely day with your DD. All these things add to the bank of 'successful days' which are what she needs to keep building on. Don't fret about CBT. Most of our girls put up an initial fight and then acquiese (sp!) in the face of reason!!

21again - it would be fab to meet - yes DD will be there. 21st would be best whatever the weather! You tell me what time (not too early!) and where (maybe Swan lounge??)

Positive - this is the best news ever!! I so hope we all keep using these smileys from now on. I hope there are others reading this who realise that it does all turn around, and can do so very quickly. Your DD is a star and must be feeling very pleased with herself. How old is she Positive? You probably have told us but I have forgotten. Tell her how proud and pleased we all are for her as well.

Hi all - so glad to read that things are good with some of the dd's.
I have been a bit busy with 3 under 10 at home full time since school broke up. dd2 is doing ok - I guess better because no-one has deadlines so life is a bit more relaxed, but then she wants to join in whatever is happening ,so even though we are limiting activity as a household to try to keep things quiet for her she is pretty fatigued. We had our 2nd visit to consultant locally last week. She took things much more seriously this time, and agreed that dd has moderate rather than mild cfs and that we needed more help. She's been started on melatonin, which has been wonderful, and we had a visit from a specialist paediatric cfs nurse as well. She has seen 205 kids with cfs since 2005, including a few as young as mine (7). She was really helpful, and gave me good guidelines on pacing, and talked with both dd's which was great. I am trying to figure out logistics for September, given dd1 will be at school as normal, dd2 having to go say x 3 per week but in the middle of the day( and not always even when planned), and ds will need some of me too. I am hoping that 2 weeks holiday ( from tomorrow - camping in France will give us thinking time and happy family time.
I find you a continuing encouragement so thank you and I hope that you all have a good few weeks.

Katsh - lovely to hear from you, have a great holiday. You sound like such a sensible mum. I'm sure with all the help you are getting, life will be back to normal sooner rather than later.
Keep in touch when you are back and have a lovely time.
xx

Hi Katsh, Great to hear from you. Have a good holiday and I hope you come back all feeling refreshed. You seem to be getting good care, with the cfs nurse etc. Its really good to get that in as quickly as possible and I hope you feel supported by everyone.

Just flying past, so not a lot to post. DD is out with friends, but probably done too much this week (no not probably, she definitely has). But she's happy. Won't know the plan for her education til September, which is slightly frustrating, but totally out of my control (from mrs control freak, thats hard and every other emotion going!!!!)

Micro climate kicked in and am now sunburnt.
Have a good holiday everyone.

Hi to everyone..

Optimistic - 21st would be fine, shall we say Swan Lounge at 2 Oclock? That should give us all plenty of time to get organised. Will you be online while you are away or should we have another way of contacting each other in case anything crops up for either of us? It will be lovely to meet you and I am looking forward to it. Meanwhile how is the other trip going or are they home yet?

Positive - glad everything is going well. It is good to read your DD is enjoying herself with friends, it is so important to them especially when they have had to miss out on so much.

Dwardle are you back yet???

21again - 21st at 2 will be fine. We will definitely be there and if you have a problem we will wait. I'll try to go online in the morning....
DS1 back from trip and they were all brilliantly behaved...I must say it is a huge relief!
I'm really looking forward to meeting you.

Hi everyone- back from sunny france - seems like we missed the deluge! We only had 1 day rain and that's the vendee. Bliss.
we had a great time and the best of it is that dd is absolutely fine. She spent yesterday at a festival with friends and is full of energy still. She was just so normal on holiday - so different from the last 9 months. Friends say they can see such a difference in her - she is animated and very talkative again. She has been behaving like a normal teenager! She is off out with a friend tomorrow and we are going to Scotland on Tuesday! (Just 2 of us to see friend)
I cannot quite believe it and sometimes hold my breath - but she is back to her old self!
Skimming through the posts, I was interested in the ones about getting up. DD had to be up by 8 during term time - suggestion by consultant - and I think it was very important. However, not sure during hols. I am leaving dd be to a point - depends what we are doing. Was v interested about the school days - feel LP has given dd a tool to use on the school days if she finds it hard to get up.
The thing about not doing too much is also interesting. Dd would have days when she just felt awful despite not doing anything. I think emotional and mental wellbeing is crucial, also not thinking that you are ill - it is important to focus on feeling well. So maybe, restricting self when feeling fine perpetuates the feeling of being ill and does not actually store up energy for the bad days. I don't think cfs worked like that with my dd.
Just reread posts and as usual agree with everything you have written - delighted for you and dd, posatt, and for you and dd, 21again. OM - sounds like things are going great for you too.
Katsh - so delighted you have finally got proper sympathetic support. Melatonin is ok I think. My dd had it but was very difficult about it (hates tablets!!!) Quite often used for SEN children to settle them. Try not to think about Sept - is a whole month away. We all know how much things can change in a month.- see posts from posatt!
I just love summer - esp this one! Keep posting everyone. I am not sure if I will get to computer when in scotland but back at weekend . Keep smiling everyone. Wondered how chocaholic is getting on with perrins - any joy?

Hi and welcome back dwardle!

So good to hear that dd is doing so well. Life's still good here. Although we have discovered a negative side to how things are improving. DD now has the energy to be a "normal" teenager and have the tantrums to go with it!!! I remember thinking just a few months ago that I would never feel bad about DD throwing a wobbly about something, cos I would just be pleased she was well again. Oh how wrong I was. She showed us with flying colours yesterday how determined and vocal she can still be!!! BUT she also showed far more maturity than before she was unwell by calming down quicker and actually apologising and being prepared to discuss her reactions afterwards.

Love to all and keep enjoying the holidays.

Positive - isn't it great to be normal again?!! Seriously, it is marvellous and I am so pleased for you, Your DD was in such a bad way and she has improved so much and life is good again .

Optimistic - glad the boys had a good time and I think the weather was pretty good if I remember rightly. Looking forward to 21st and should bring DD with me.

Dwardle - lovely to hear from you again although briefly, have a great time in Scotland and looking forward to "chatting when you get back".

littlepollyflinders we are over here...!

Littlepollyflinders presumably you are a Mum struggling to deal with CFS in a child. Please come and talk to us, we have all been through what you are going through and importantly we know how you are feeling .

Bumping so we don't get lost.

Littlepollyflinders Hi come and find us!

All gone a bit quiet on here, hasn't it. I really hope everyone is quiet because you are doing well. But I know we will be here for anyone who needs us.

New fridge freezer has arrived and I am stupidly happy with it. This is instead of a holiday this year, along with, hopefully, a wet room. Just waiting for the quote on that. Now we are actually glad we did not go on holiday as we are realising how slim the line is between good days and bad days!!!! Had some big bust days !! CBT lady and I are at odds slightly.

Still unsure about schooling, which is causing dd a lot of stress. - may have something to do with the down turn???? I just wish I could do something, or know what is going to happen. GGggggrrrrrr!!!!! She is getting stressed about which uniform she will need etc. as well as the general knowing what she will be doing. Must be patient!!! This is very difficult for mrs impatience! Along with Mrs control freak and mrs Evil!!! I can be mrs nice too!!!

Anyway enough ramblings after a quick drink of pink bubbly. I will probably read this tomorrow and wonder what on earth.....
Have a good weekend and keep posting, so that we can encourage others that there is light at the end of the tunnel.

Hi to EVERYONE who has been on here.

Hi All
Am still here - just been in scotland getting midged
DD is still going strong - went on 8 mile bike ride without batting an eyelid, spent all last sat at a music festival and still got up at 9 on sun.
She is totally normal - bit of teenage grumpiness now and then but just fine. I cannot really believe it!
PAO - can really understand joy at a new fridge freezer and wet room!
Sorry you are still having bust days. Can understand frustration re sept. am thinking much the same but nowhere near as stressful as for you as dd has nice school and oodles of support. Suppose all you can do is hang on in there!
Hope you are all ok. We are! DD is about to decorate her room - wow! DH has gone to see his dad in sussex and I have a trashy novel! Have no idea what ds is up to and do I care! I love summer - even when it rains! We are going to Yorkshire next so I am sure it will rain lots there!

Hi Dwardle and welcome back. It is so good to hear DD is still well and she will continue to be so now, I am sure. Enjoy Yorkshire but please don't forget us all here and I hope you continue to post. We all enjoy chatting to you and of course your experience will benefit others too.

Positive - I understand the apprehension about DD but try to get her to focus on the good things and tell her she won't be the only one who is a little bit nervous. She has improved so much and she can continue to do so .

I am meeting Optimistic at the end of the week so I shall let you all know how that goes, I am really looking forward to that .

Have a good meet up OM and 21again. Is it books under the arm again?? It was so weird when we met up. We sort of knew so much about each other, but knew absolutely nothing about other parts of our lives. Have fun.

Love to you all and thanks once again for the encouragement.

I have a confession to make . I have lyed slightly changed the truth and told the CBT lady that we may (that makes me feel a bit better) be away, so have cancelled the appointment for this week. I just could not stand the condescending "Mrs B....." speech for yet another time. At the end of the hols it will be easier as life is more routine for everyone then. The thing is I know she is right!!!

So pleased that all dcs are doing so well and enjoying the summer. Long may it last!

Positive - Maybe if you are both at odds over things it would be a good thing to find another therapist, or does your DD get on really well with her? We tried a few different therapists until we found one that really suited DD. Hope your DD is OK.

DD is very well now, she has had lots of time with friends during the hols and we still have quite a few things planned. She is spending some time with the grandparents next week and before we know it school will be starting again . I have always enjoyed having DDs home during the holidays although I must say I do quickly slip back into a different routine when they go back to school.

Love to everyone, stay well .

Hello All - glad to see that there is lots of positive news. Sorry I haven't been around for so long, I have lurked a couple of times, but found it difficult to focus myself enough for an update. Well, Perrins is certainly not for the faint hearted, there are many downs but also we have had a lot of ups. In the last couple of weeks, DD has been out more times than she has for almost 2 years. This has included 2 outings to the local Harvester, the last one was last Friday and we ended up having lunch there, again the first time we have been able to eat out with her for almost 2 years . The vast downside is that she goes downhill very dramatically after treatment, almost immediately. This is very hard for her when she is usually feeling very well when the practioner comes. This weekend was especially tough, with very bad leg pain affecting her walking (which always scares me as it reminds me of how things were last year). But (fingers crossed) she seems to bounce back, and when she does she is definitely a lot better than she was before treatment started. We were warned that it was considered "good" to get worse before an improvement (it is all to do with releasing toxins in the body) but it is very hard and I suspect would be almost impossible to "sell" to a younger child (DD is almost 18). We also have 4 minor and 1 major massage routine that has to be done everyday, so it's not an easy option but we are making progress so we're pressing on!
Enjoy the rest of the summer and I'll try not to leave posting so long next time.