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!

Katsch - that is exactly it. I do feel, like Choc, that our DDs will ultimately be better people because of this. How is DD today? Do hope she is coping. She sounds such a wonderful girl and a credit to you .

DD felt sick and dizzy yesterday afternoon but has gone in today. She ate very little lunch and then wonders why she should feel the way she did. These symptoms are exactly what her therapist said she would have if she didn't eat properly. Apparantly cottage pie for lunch "wasn't very nice". What on earth can be that bad about it??? Some stern talking from us telling her that she was not ill, everyone gets dizzy if they don't eat etc and that she would be ok. She is seeing her oldest and best friend tomorrow who she hasn't seen for some time, so that should give her something else to focus on.

Hi to all, keep in touch..

Good for you 21again.

I have to say that my DD takes in a packed lunch now and eats in bits and pieces during the day. At least then I know she will eat what she takes. Would that work for your DD?

Glad to hear all is still going well. What a momentous couple of weeks for you!

xx

Not such a great day here - dd all set to go to school this morning - up, dressed, breakfasted and then went down for a rest ( which is usual), and just couldn't get up again . I'm not sure what has knocked her, but she is so fatigued today, and has spent almost the whole morning on her bed. She got up for lunch, but has chosen to go and lie down again. Her little brother has a cold, so maybe she's about to come down with it. Dh is away for 48 hrs so I'm hoping she's not this bad for the whole time, or the others are looking at a Saturday stuck in the house.
21again, I hope that lunch is "nice" today . It's hard for the dd's and for us to separate the normal things that happen - eg don't eat, feel dizzy - from the CFS stuff. You sound like you were pretty clear on it, so I hope today has been better.

Katsh - am sending you a big hug. I'm sure you are right about DD coming down with a cold. Can you get some of those great friends of yours to come round over the weekend so that you aren't on your own, stuck in the house?

Have a better weekendx

DD had a good day yesterday and came home on top of the world. DH picked her up from school and had been waiting where she wouldn't see him. Her body language and whole attitude was very positive and she seemed completely at home and relaxed with the girls. We now have to continue to help her to remain positive. She has shown she can overcome this last hurdle now and we must support her and keep her bouyant.

The advantage of the new school is that it is much smaller and the staff are very much more involved with the pupils. DH phoned yesterday evening to confirm how DD had been getting on and the lady in the office said that she had noticed what DD was eating that lunch time (bearing in mind what had happened yesterday). They know she has been ill and were aware of what had happened on Thursday. It certainly does help to know they are so watchful.

Katsh - how is DD today? I do hope you have a good weekend with her.

Positive - is DD getting to the unit ok? Hope to hear from you soon.

Choc Dwardle and Optimistic - hi how are things?

Katsh - Big hug for you. So sorry that you and DD are having a hard time of it. We have all been there, just hang on in there and it will improve. I really hope dd has a good weekend. It sounds as if the school are really supportive.

21 - I am pleased your DD is enjoying the new school. Have a good weekend.

Choc - Glad the online school is going well. That is a really positive step for your DD to feel good about herself.

dwardle - Hope headache didn't turn into anything. You must be so pleased how well your DD has done. Long may it continue. I really hope all the bad CFS is behind you.

OM - Ditto from above, except the headache bit!

Here DD had seemed to have coped better this week at school (1 hour) and I was so pleased that her downturn seemed to be just due to everything being new and different. She is so determined to increase her time there. However I had noticed that she seemed to "disappear" for at least an hour or 2 each afternoon into her bedroom. She has always wanted to go there to have some space to herself, but when DH came home yesterday I was just going to investigate what she was doing, but DH got there first and she was totally zonked on her bed. Talking later she is trying to hide from me how exhausted she actually is because she thinks I will say she cannot increase her times and she is just so desperate to be "normal". We have opted to keep going, but she has said she will be more open with us about how she is feeling, so that we can just do what will be best in the long term.

dwardle & OM - Can i please pick your education brains. I am so very happy with the way we have been treated at the unit. They believe what i say and treat DD with belief and respect. (Totally alien concept after the school last year) However, the school are still very much involved as DDs place at the unit comes out of their budget. We have got the date for DDs final statement review before she leaves compulsory education. This is organised by the school (urgh!!) but with input from the head of the unit. I am already getting very wound up about the review as I feel as if 2 worlds are going to collide. One from the school where we were treated so badly and one where we feel so differnetly. I need to know how to handle this. Also, at her review last year I was told not to mention her illness as it was irrelevant. How can it have been irrelevant if it reduced her education to 2 x 10 mins per week for the rest of the year???? Am I allowed to bring her medical issues into the discussion.? Surely that will have had a huge impact on her future education. She will leave school with no qualifications as we are using this year to get her back to a "normal" life, but don't want her put into the "special needs" group at the college next year as we feel she is not in need of that "specialist" group. Any tips????
Sorry, a bit disjointed all that last bit and I will come and explain more if you need me to. Just had a bad mum time after dropping DS at swimming at 6.30 am and forgetting to collect him at 8.30!!! Now got to take DD2 to work, but have typed so much I do not want to have to start all that lot again, so please excuse this awful ramble, but I hope you get my gist!!

Positive attitude the bit where you say that your dd snuck away to rest 'hiding' it from you is so typical to my ds for a long time i believed he was upstairs playing on the x box or ps2 and it was only when ds1 told me that really he was sleeping and hed discovered quite by accident that Sam was actually sneaking into his brothers room and sleeping- Sam is so desperate to be 'normal' he resorts to tactics like this.

Everyone seems to be having ups and downs at the moment.

Things here arent so good either.

Thankyou all for forgiving my absenteeism ignorance.

Nickschick sorry to hear Sam is not so good. Has he acknowledged the illness yet? I seem to remember he was in denial about it for some time and wouldn't consider pacing or any other treatment for that matter. He has been ill for a long time, would it be right to perhaps consider lightning for him or would he not entertain the idea? I hate to think of all our DCs going through such a bad time and wish it could be better for them. I think my DD is coming out of this now and feel that her new school may be the final bit of help she needs, but everyone is different and what works for one doesn't necessarily work for another.

Positive sorry also that your DD is finding it tough. We didn't really have to embrace pacing in quite such a drastic way as you and so I can't be sure if sleeping in the afternoon is "allowed". It was one thing that our DD didn't do too much of even though she was so tired. I know that the others who have seen Dr Crawley will have more advice for you on that. I do hope she picks up soon and at least she is certainly better than she used to be - you must remember that, it is a good sign .

Half my post has just disappeared and I can't for the life of me find it so hi to Optimistic and Dwardle and Choc, hope your DDs are well. Katsh did your DD catch the cold? How is she?

Thanks for all the hugs ladies Yesterday continued to be a not great day, with the prolonged and painful loss of one of her teeth at teatime causing quite a lot of additional stress. Anyway she's not been so bad today. It was sunny and I had no plans to do anything at all, so she was well paced and rested, and we did manage to leave the house for a while to walk the dog and the toddler . DD was pushed in a pram, but did have a little play at the playpark, and survived it all ok. I made playdough this afternoon and the three of them ( including my ever so sophisticated 9 yr old) had a great time doing cookery shows in the garden. So here's hoping the cold isn't coming and yesterday was just a blip.
21again - glad your dd had such a good day at school on Friday. Nickschick sorry things are tough for you at the moment. Hope tomorrow is a good day.

Hi All
Positive first - Can you get hold of a copy of the review document that your LA are using? When is the meeting?
Sorry - going to have to go - will post tomorrow

Katsh and positive hope things have 'looked up'...Hi everyone else hope your all well.

School really is a big thing for our dc isnt it?,its such a shame that on top of what they already feel no matter how we address it school becomes the issue,for us to home ed Sam was to give him a restful time and hope he could 'recoup' (this was before the official diagnosis) now he is at school he is 'determined' to be 'normal' but he isnt and he cant even accept he has the condition let alone work towards living with it.

Positive I cant see how your dds illness can be 'irrelevant',Id definitely want it acknowledging at any meeting with school.

Just bumping up the thread, hope everyone has a good week. Will be back on later .

Hi all,

Rubbish weekend here. Did a major panic - me, not DD!, about the fact that she seemed to be going downhill so quickly again. Had difficulty walking around at home and spent the whole weekend on the sofa, not even really aware of what was going on around her.
We had a talk about the fact that it might not be wise for her to go into school today, but she was insistant that because she had signed a home/school agreement with the words on about the school expecting 100% attendance, she HAD to go in!! I explained that illness was allowed, but not very successful in persuading her.
Today she did seem a bit better and brighter. She has gone off for her 1 hour, so I will see how she is tonight.

Hope everyone else is doing OK.

Hi really hope you don't mind me posting but the thread title caught my eye. I had ME for 5 years - bed ridden for some of that time. I know some of you have already tried LP with your DC but to say that I found it the answer for me. It was not an instant cure but it gave me strategies to cope when those ME symptons appeared. Reading these threads takes me back to when I tried to be "normal", pushed myself to get back to work for a short time each day just to crash out on my returen. After using LP this no loner happens. I just really wanted your DC to be aware that it will help them and that they will get through this awful illness. I reckon we recoverd ME suffers can cope with anything after getting through this illness!
(Also some of you parents may help the LP ti help you to cope with your recovering DC)
Apologise if I have pushed into your thread but I do understand what you are all going through.

Sorry for typos -toddler on my lap - helping!!!

Hi Dinamum - is not a private thread and your wise words are SO welcome!Lovely to hear from you.
My dd is one of the LP ones.

Katsh - just a thought. One way I coped was by finding others who had dcs with cfs/me or had had it, and discussing. This was on this thread and via someone I was put in touch with. Knowing I was not alone, that my dd had similar symptoms, and that dcs DO get better really helped. I also printed out stuff off Gt Orrmond St website which was calming. I also thought - it IS OKAY to feel very p**d off about this but that won't help so I felt like that, got through it and tried really hard to cope. Had good network of professionals who gave reassurance too, which really helped.

Well - last week, after full wellness since 20 July, we had the 'headache'. Paed checked her over on Friday but could not find anything amiss.(she had not heard of LP but was VERY interested, positive, supportive and took website address)
Headache gone by Fri pm.
Sun eve - after full well weekend inc dd in gym at 8am sat with a pal - we have the pain!
Just hovering around the appendix area but no other symptoms - so - I took her in to see GP - who could find nothing.
So - I took her to school.
Am I a horrible, unsympathetic person, too hard or what?
I so sympathise with all of you and the hard times you have been having over the last few days - have been lurking but not typing, but believe me, it's still not all plain sailing here either.
Send huge hugs to you all. Am working at home because ds, who is never ill, has AWFUL cold
am helping positive re the school thing in another place in case anyone thought I had been singularly unhelpful!
21 again - are you still smiling? Katsh - send you big hugs - and everyone else.
Must go back to work now.

Yes, its ok i am not being ignored! Don't worry I would scream and shout very loudly if I thought you were all ignoring me!!! - Or go and hide under a stone somewhere and cry.

Dd appears better today, more lively and not so tired.

Dwardle - hope this week is better. Do we ever relax and go back to being the same again? I can't imagine not worrying now. I was never a mum to trot off to the Dr or anything, but when any dc is ill now for longer than I think they should be I start to watch for every sign going.

Someone at front door got to go.

OM where are you??

I'm here! I read this thread daily but don't always post because I don't feel I have anything much to add!!!
POA - I'm not up to speed on the education stuff so am trying not to muddy water! I knew Dwardle would be helping.

Dwardle - never mind GP/Paed...what does LP practitioner say?it sounds like your DD is still doing a few ME symptoms and you need support to overcome these hiccups.

Dinamum - it's so lovely to hear from an adult who has done Lp successfully for so long. I wholeheartedly agree with your post but it's nice to hear from another source!!

21again - how's it going?

Hi to Katsh, nickschik and choc. Hope your DCs are feeling OK today.

DD has a sore throat today and has not been sleeping well but she is still going to school. The sore throat seems to be doing the rounds at the moment at her school so there's not much we can do about that apart from dosing her up and gargling etc. Her homeopath has left out some remedies for her which should help her sleep. DD has huge faith in the homeopath and so it will probably give her peace of mind and may help her to relax properly at night. I think that with all she has been through recently it is not surprising she is having this problem but I seem to be on tenterhooks the whole time waiting for a call from school. Will it ever go away??

Optimistic your views are always so valuable, you should not feel that you don't need to post. It is also good to hear how your DD is getting on, we all love hearing from you .

Dwardle I know just how you feel right now, as you can see from above. Part of me wanted to keep DD at home and let her rest but the other part told me to treat her as I would her sister - who incidently had a bit of a sore throat last week but not enough to keep her at home. Does your DD use LP on symptoms like those she has just had?

Positive your DD is doing so well and she is so determined. I am glad she is feeling a bit better, hopefully she and you will feel encouraged by this and she will continue to improve.

Katsh, Nickschick and Choc how are things?

Dinamum thanks for your post. I know that LP has helped so many people and I am glad you were one of them. Our DD was not a candidate and hopefully is recovering without it but I have not discounted it.

Meant to add we have had a lovely letter from the Headmaster at DD's old school wishing her success, and stressing that the door is always open to her should she ever consider returning. I wish all schools could be as helpful and supportive as ours has been.

OM - my thoughts entirely re LP practitioner but have not yet got dd to actually email her. Is hard as I do not want to make her.....but!
Why is life never easy
How is yr dd's throat today, 21again? In answer to your q, yes, she should be using LP on her symptoms but she is not being v easy this week!!!! Glad you had such a lovely letter too.
We have just had v helpful meeting at school - they are great.

Dwardle - I emailed our practitioner direct as my DD was just as awkward. Tbh it was me that was feeling worried not her. The practitioner put my mind at rest and so I handled DD better. Your DD probably doesn't feel the need to email. It's you who needs reassurance! does that make sense?
My DD looks wiped today.... She has a huge amount of homework but I have persuaded her to go to bed in a minute and she has done her work in small chunks this evening. I hope I've managed to 'talk her out' of a skive attempt tomorrow!!

Must go and check she's 'getting on'

Talk later

21again - thanks for your post. It's OK I wasn't feeling odd about posting just that I couldn't think of anything to say. !! Just wanted you all to know I am here!!

Thanks for that OM!
Will do that tomorrow

DD much better tonight. She played hockey again today and scored two goals so she was on a bit of a high when I picked her up. She does seem to have been up and down lately but things are definitely levelling out now that she is feeling more settled and into a new routine.

Optimistic don't take this the wrong way but somehow it's reassuring to know your DD looks wiped out. I think that whenever my DD looks like that I start to panic inwardly and wonder what may be happening to her. I forget that they all get very tired and it is perfectly normal for all DCs to be like that and to go to bed early as a consequence.

Must go DH just pouring a glass of wine for us both, for some reason it is going to go down well tonight .

21 - glad your DD seems to be doing well and pleased with the hockey!

OM & dwardle - Sorry that things are a little up and down for you too. Your DDs have come so far though and have done so well. All the research I have seen says that the autumn is the worst time for downward slides, so I suppose it is something we ahve to accept a bit and adjust to. (although probably not in line with LP thinking!) I hope they both make it to school today.

Katsh - How are things with your DD? Hope things are ok.

Here DD is much the stubborn same!!! (ggrrrr!!!) The tireder (oh teacher, is that a word!!!????) she gets the more stubborn determined she is to prove that she is no longer ill and can do anything. She hasn't actually managed to get out of the house, other than the 1 hour school for at least a month now. The more I try to persuade her that maybe 1 hour at school is too much the more she digs her heals in. I am letting it go for a while, but will have to dig my heals in if it continues, which always results in a spectacular firework display of emotions!!!
Anway, we survived a "review" of her carer package yesterday. I was petrified that they would say she no longer needs to have a carer as she can now walk to the toilet and feed herself, but the lady was very nice and when i explained how things were when she is not having a good day, we agreed to have it in place for another 3 months, 20 hours a week, while I work. To be honest I would love not to have other people around in my house as I do like my own space, but it does mean I can go to work and not be worried about DD falling, choking or not being well at home alone.

Off now to do some quick housework before work (impressed OM???). Hope you all have a good day and DDs are ok today.
Mrs Evil