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 - glad your DDs seem to be doing well Optimistic and 21. DD was very tired on Sunday after our visitors Saturday but seems to have bounced back which is really good. We just went for a little drive round in the car which is brilliant. Strangely, she finds this very disconcerting, having not been out in the car much ..says it feels really fast!

Hi. Need to ask a question. What would you do? DD as you know is not as bad as your DDs but the pattern we are in at the moment is like this:
Sat - awful until acupuncture then fab - lively etc. has a friend round for an hour. In town for half hour to choose top R+R in between.
Sun - quite good still. Quiet day till 1.30 then sun lunch with toddler cousins. 21/2 hours. R+R before and after.
Mon - not quite as good but does lessons 2,3,4,5. Home for R+R
Tues - awful can't go in at all
Weds- aawful can't go in at all

Am thinking after next meeting and after half term cut right back to 1 lesson a day and build up slowly. She is coming round to seeing that good days leading to bad more often.

I'd really appreciate comments on above but be gentle with me as I'm feeling v. sad having just come back from GCSE options eve and seeing all other healthy girls and wishing mine was. Also talk about all opportunities coming their way in Y 10/11 and all I want is a girl who can do half time! Was very wobbly with form tutor who prob thinks I'm mad, depressed mum Help!!

This is exactly the sort of pattern we have with our DD. If she was at home full time it appears she could live a pretty normal life, but the stresses and pressures of school are simply too much. I know that my last post looked pretty upbeat and full of hope but the reality is that deep down I have no idea if this will be too much. One thing that occurred to me reading your post was whether the acupuncture is giving her body a boost in some way but - is it a false boost and she is using energy that simply isn't there? I'm not sure if I have explained that very well but hope you get the meaning. The reason I ask is that I was reading up about the various different ginsengs and that point was made about some of those.

I know exactly how you are feeling and I have been there a lot. The period before Christmas was especially hard for some reason and, on one occasion seeing all her friends running out to play hockey and looking so fit and strong, just reduced me to tears. Around this time DH and I had a chat with DD's paediatrician, and half way through the chat he turned to me and told me I looked tired and sad and that this would transfer to DD. He urged me to go to our GP and to try anti-depressants and I did just that. At the time I felt so overwhelmed by everything and I know I couldn't think straight or rationally about the illness. I now feel so much calmer and able to cope that I know it was the right thing for me. It is a temporary measure and I'm not suggesting this is for you, but letting you know how desparate I was feeling.

We are here for you and sending you love and support. I do hope your DD picks up again soon. This is such a heavy burden at times, and we simply want them to be able to lead something like a normal life. There is not much worse for a parent than having a sick child, but we have to keep hoping and believing they will get better - and they will!!

I know two other families of teenagers who had this illness and those DCs completely recovered, the vast majority do and there is no reason to think that our DCs will not be the same. It is just so hard sometimes to keep sight of this fact.

I will be thinking of you today and please post soon and tell us how DD is. Tell her there is another year 9 girl sending her lots of love and support who understands exactly what she is going through.

Will be thinking of you and please post soon.

Thank you so much 21again. It's lovely to have your support as at the moment I just feel so tearful all the time. I think my DD is actually far more resiliant than me - bit of role reversal going on 'don't worry mummy ' etc. I am going for some therapy this pm so hope to feel calmer later.

I know that acupuncture does only relieve the symptoms and that the effects are temporary. Tell me about your herbalist I think you said you were using one - we've got an appt with Jo Dunbar (who's been mentioned in the posts) next week so that's something to look forward to.

My DD still in bed - didn't get to sleep till 1am . Should I let her sleep as long as she likes. Dr Crawley would say no I think!

Feeling a bit better now (no smiley for wobbly smile!)

Thank you so much 21again. It's lovely to have your support as at the moment I just feel so tearful all the time. I think my DD is actually far more resiliant than me - bit of role reversal going on 'don't worry mummy ' etc. I am going for some therapy this pm so hope to feel calmer later.

I know that acupuncture does only relieve the symptoms and that the effects are temporary. Tell me about your herbalist I think you said you were using one - we've got an appt with Jo Dunbar (who's been mentioned in the posts) next week so that's something to look forward to.

My DD still in bed - didn't get to sleep till 1am . Should I let her sleep as long as she likes. Dr Crawley would say no I think!

Feeling a bit better now (no smiley for wobbly smile!)

21again - how do you deal with DD off school. Have you told school she will be off until further notice or do you phone in every morning? It's that I find so soul destroying too even tho it's an answer phone!! Unfortunately my boys are at the equiv boys' school - we don't have mixed here - so the school don't really know us as a family which doesn't help. I thinks it must be easier not to feel so isolated as far as school is concerned as your DD1 goes to same school.Is that right?

My two DDs are at the same school so DD1 tells them her sister is ill and I don't have to phone in. That does make a difference and I know when this illness first started that it was a horrible feeling phoning in every day.

We were using a herbalist at the beginning but DD got worse after the summer and so we have stopped that for the time being. Homeopath tomorrow for the first time so I will report back after that appointment.

DD is in bed now I took her out in the car and suddenly her vision went and she got the most awful migraine. She was in tears from the pain and although we did have some paracetamol in the car they didn't seem to help at all. Hopefully she may sleep it off.

Had to stop typing there as I could hear DD sobbing upstairs. She has been in awful pain and feeling nauseous, but I think she may now be asleep. I have heard that migraines are quite common with CFS and suppose she may need to see the GP to try to get some relief for them. She had suffered from them intermittantly before this CFS took hold but hadn't had a really bad one since last year. Having said that, her relapses always start with blurred vision. Could there be some connection?

sorry things arent so good for both your DDs. I'm not on mumsnet as much as usual atm (I have complicaitons with younger DD too atm). Anyway, Optimistic in reply to your question, I think Dr Crawley would talk to you about "boom and bust", it is a very typical ME thing of good days, so you do more, followed by bad days when you feel awful. It is a very difficult thing to do, and in the end we had no choice, but you have to ease of so much that you are on a level. I would say that some of your DDs leisure activities were too much for her and I know that is terribly difficult for her (and you to accept). There is a lot of info on pacing on the AYME website I know. I need to dash now but will look in tomorrow. Hope you both have a good evening.

I had ME for three years and did the Lightning Process last year-there was a teenage girl on the course too. My life has been transformed by the treatment-I am now working full time ,driving ,running....activities and experiences I hadn't been able to carry out for years due to ME.
I would definitely recommend that your daughter tries it (downside is it ain't cheap-approx £500)

Can you tell me about it Arctic roll? I have looked on website but ir's a bit vague and the bit that put me off was the implied residential side. However there is a practitioner about 20 miles away so if you could explain it to me I'd be grateful!

Thanks for that choc ! I have made progress in that DD has admitted that she is overdoing it and has agreed to colour in chart again. Hope both DDs are OK. Look after yourself too.

21again - so sorry about migraine - my turn to be supportive I think. Hope she recovers after sleep. Do try acupuncture as it will give immediate relief. That's why we got into it as DD had such bad headaches that pain relief didn't work.Don't mean to bang on about it sorry if I seem to...

Hi everyone - DD slept for two hours and felt better when whe woke up, although a bit wobbly for some time. Thanks Optimistic for your support it does mean a lot, and Choc too, I do hope your DDs both start to feel better .

I am going to email my sister's friend who went through lightning process before Christmas. She had gone in for the treatment barely able to get out of a chair and came out a different person. She has since had to cope with her husband having an operation and as far as I know is managing well. Will let you all know when she replies.

Great 21again. Had a breakthrough with DD in that she has agreed to let me fill in her pacing sheet and of course that has led her to monitoring her activities a bit more. Now I need some ideas for 'yellow' activities ( low brain/theraputic things) for a girl who doesn't really do art, music etc. We need something 'lite' she can get in to. Any ideas??
21again - things will pick up for your DD bigtime once she has seen doc crawley I'm sure, so keep going with your ideas till then. Would be useful to keep a diary of DDs symptoms, triggers, and how much TV/computer/reading she does in a day, as she will go through it all with a fine tooth comb and we were unprepared!!
Have a good day. Talk later. keep posting.

Email from DS's friend who is "feeling really brilliant", and her grandson told her she was "like a normal person now". She tried the pacing and like so many others found it very hard to stick to. A friend of hers went with her to do lightning, she had had CFS mildly for a couple of years and she is also doing very well. It certainly is very interesting and worth keeping in reserve I think.

Optimistic - so glad your DD is back to the pacing and I really hope you see some results. Thanks for the tips re Dr Crawley, we haven't heard from her yet but should do so soon.

We saw a homeopath today who really seemed to know what she was talking about re CFS in that she endorsed the pacing and stressed that even when DD feels good she must refrain from doing too much as she will only have a little bit of energy and as soon as that is used up there will be another relapse. She said that DD was very typical of many youngsters who get this illness - very active, high achiever etc. I am hoping DD at last accepts that she mustn't try to overdo it - we'll see how long it lasts! DD has some remedies to take and she is very positive at the moment, maybe the placebo effect will make a difference, I don't really care as long as we see some improvement!

Have a good weekend and will post again soon, DD is feeling good again today, and fingers crossed for a short but successful day at school on Monday.

optimisticmumma-I did the Lightning Process course over three days and it was a non-residential course-my practioner was a lady called Linda who lived in West Sussex -sorry to be vague at this point I will try to find the full details later.
I was initially quite cautious about the treatment as it had caused quite a stir in the ME community and there was quite a lot of cynism about it. I think that people aren't supposed to talk too much about it makes others instantly suspicious as if it's some strange cult or money spinning con. However I had heard two success stories of friends of friends who had done it and eventually becamed so desperate though I'd give it a go.
People who've had the treatment are encouraged not to discuss the treatment as it might harm the chances of others going into the treatment with pre-conceived ideas.

Thanks arcticroll, I understand what you're saying. Do you think it is something a 13/14 year old will be able to do? She is finding the pacing so hard....

Optimistic - I asked that very same question of DS's friend and she seems to think that lightning is well within the capabilities of a thirteen year old. I think that if the decision were solely mine I would definitely book it, but DH is more cautious and wants to explore other avenues first. It probably is the right thing to do but I do feel impatient sometimes.

Took DD shopping today for some bed linen as I had promised her. We managed to park close to the store so she didn't have far to walk, and then stopped for a cup of tea before walking back to the car. So far so good.

The homeopath yesterday recommended that DD took a good mineral supplement ( with vitamins) and also probiotics which will help the immune system. She is also taking fish oil capsules with EPA as opposed to DHA (whatever they are). This was recommended by the consultant to help combat any depression and are quite a high dose.

School have been great and yesterday told us that they will accomodate whatever we want for DD, it takes such a weight off our shoulders for the time being.

I hope everyone is OK and Arctic Roll thankyou for telling us about your experience with lightning.

21again - sounds like you had a good day. Thanks for the info on supplements. Glad school are being so good. I'm kind of nervous to do lighning as I feel if it didn't work what then?? I'm almost keeping it for final big idea!! Does that make sense? My DD continuing to be so good. She has been much more on a level as she is keeping more of an eye on her 'red' ( high brain) activities. She has managed 3 reasonable nights' sleep so I'm keeping everything crossed for this week. We are going to try 2 lessons a day only. If too much we'll go to 1 lesson. Two of her schoolfriends surprised her yesterday by making a cake and bringing it round - so lovely of them. Have a good week and keep posting.

Optimistic - I do know exactly what you mean about keeping lightning in reserve, and I veer from thinking like that to wanting to try it straight away - especially when I feel desparate. I am fairly sure that if all else fails we will try it.

It makes such a difference when friends are supportive like your DD's - how lovely of them. I am so pleased your DD is doing well and hope she has a good week. Our DD is going in at morning break tomorrow and finishing early, and then hopefully again on Wednesday. No school on Friday as she has a CBT session, so two days only and school are arranging for DD to see their special needs teacher - because she does have special needs - to help with anything she can. Apparantly one of the Sixth form girls has had CFS for four years and she is going to have a chat with DD tomorrow. So I have to say that we are very lucky and getting a tremendous amount of help from school.

Will be thinking of you tomorrow, and Choc if you are around I hope everything is OK.

21again - did you manage to get DD into school? Our best plans scuppered by 3in of snow!! Still, everyone here including DH as no trains to London so we're off to do a bit of sledging and have some lunch (not for long tho as I want to preserve DDs good health.

No, DD was going in at break time but got a text from a friend saying they are all going home at lunch time, so we have changed it to tomorrow. DD has been out with the dogs in the garden, but not for too long. This is where it is hard to stop her as she feels fine, but I suppose it's where the damage will be done so we have to be strict.

I hope everyone has a good day, will be back to check in later.

Hi everyone. Back to 'normal' today as boys and DH have managed to get in to school/work on train.At least I haven't heard from them...
DD been great since Thurs as she has let me fill in chart and is therefore watching what she does a bit more. All set to go in for 2 lessons so we can preserve this level. She is sleeping much better - not sure if it's the melatonin or just that she is feeling more in control and more accepting that 'Mum was right'. What 13/14 year old wants to admit that??Anyway a good night's sleep seems to prevent the flare up of other symptoms and make everything more manageable. I just hope I have found her baseline at last ( only taken 2 months!!)
Post back everyone. It would be great to hear from you.....

So pleased everything is going well and especially the sleeping. I know that insomnia is a side effect of CFS and causes huge problems for some sufferers,so if your DD can get a good night's sleep it is going to make a huge difference to her. I can remember trying melatonin a few years ago and found it helped me get back into a long lost sleep pattern.

DD went into school yesterday at break time and coped well. She has gone in again today but that will be all for this week. I know she feels capable of doing more and we are having to hold her back but it is very hard for her. She asked me if she could audition for the school play!! Obviously it is out of the question - not just because of the extra hours involved - but also it will let a lot of people down if she is ill. Deep down she did know that but it is such a shame as this is the side of school that she loves. We have to be grateful that she feels well enough to even consider doing it.

Just to add - when I woke DD up this morning she complained that her shoulders were really aching badly. "Here we go again" were my first thoughts until she remembered that she and her friends had been doing press ups yesterday at school - aaaarrrrggghhh!!

Oh God!!. You are definitely doing the right thing and if she can keep it up then you may have found her baseline. My DD had to miss a school ski-ing trip which we had paid for. It was so hard for her but she realised it was well beyond her (I hasten to add that was last year!) Luckily someone else took her place and we got our money back! My DD has a party this weekend and I'm already hinting that she will only be able to do half of it. She is already coming round to itI think it is our job to at least look as if we are considering their ideas even though we know they can't do these things.We've got to select GCSEs next week and we are simply going to assume she is 'normal' and choose the same number as everyone else. If she can't manage them we can decide what to do at the end of Year 10.

I know what you mean - it is so hard when events like parties come up and they have to miss them. The problem is - and I suspect all girls of this age are the same - if it involves sleepovers they get virtually no sleep whatsoever and our DDs are going to suffer as a consequence. At the last party DD was invited to we picked her up after a couple of hours and to be honest she was just so grateful to be out that she didn't really mind. DD also had to miss a week long school trip last year which did upset her but the longer this illness lasts the more accepting she becomes of these problems.

I keep thinking about GCSE options and I'm not sure what choices she will be able to make. I think your idea may be the best as I hate to think that her choice might be so limited because of missing so much work.

No more school this week for DD and she has a CBT session tomorrow so that will prove interesting. She told me yesterday that she doesn't need to talk to anyone and feels fine. I would hope that thinking that way is a plus as she obviously isn't dwelling too much on the illness when she feels well. I think in some ways the fact that her deterioration was gradual did make it easier to accept, although with hindsight, if we had known more about the illness when it first struck, maybe we could have avoided what is happening now. Problem is there is no blood test for it and when she was first having problems we were advised to let her do what she felt she could cope with as far as sport and school was concerned. DD just about kept her head above water for a couple of months but then crashed and has been bad since.

Is it this week you are seeing Jo Dunbar? I hope it goes well and will be interested to hear what she has to say. Hope your DD stays well. Dh and I are seeing the paediatrician tonight to discuss the recent diagnosis of depression by another doctor. To be honest at that last appoointment DD was in the midst of a relapse and feeling terrible. If that same doctor was to see her now I am sure that he would't come to the same conclusion, although I suppose I am no expert!!

Look forward to hearing from you and hope Choc is sorting things out OK.