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!

Dwardle - nice to hear that all is still so good! i am not surprised! I wasn't meaning to be rude when I said meeting up was weird. I thought it was great too!!. Have a great week and keep letting us know how DD is. I'm sure everyone on the thread would like to know - what a lovely girl she is!

Positive - agree with Dwardle re Study Centre. Surely they have to make provision for your DD even if there is no-one else. Sounds like you have a plan though. I hope she keeps feeling better....

Hi all,

Yes I got home safely, thank you. Arrived after 9 absolutely exhausted, but just in time to watch the Tour De France highlights, so perfect end to a very good day! .

It was great to meet up. Wish I could have stayed for longer. But the conference was good and well worth going to. It gave me a lot to think about. One thing that came across very clear was just how little is known and how little different groups agree about things. Some exchanges were very heated. I am really pleased that DD had made the first steps of improvement before the conference, as I think if I had gone just one month ago I would have gone expecting certain answers and would have been disappointed.
The biggest thing I got from the afternoon was from the guy from the education department. Following his ?bit? I went and spoke to him about just a few school bits. His eyes were on stalks as I asked his opinion. He asked what the school policy said, when I told him they didn?t have one he was nearly lost for words, spluttered and was genuinely appalled. I was then asked if I would be prepared to speak to a meeting that would be arranged with the island school heads, with Dr Crawley and AYME people. It wont be for many months and DD will probably be nearly through the system, but in a way that will make it easier to say exactly what needs changing for others without it being all personally for DD. (if you understand my logic) I was so chuffed!

Also there was a male teenager there (thought of your ds nickschick) who had done the lightning process and looked absolutely fabulous (not in a paedo way!!) His simple statement about LP provoked the most aggressive outburst of the afternoon, poor guy!! Dwardle & OM, if you had been there I am sure you would not have just been sucking lemons, but throwing them too!!! I strangely found myself totally agreeing with this young lad. On reflection, the people who were so against it were very negative people and I think you perhaps need to be positive and proactive to ?get? the idea of LP. Maybe I am totally wrong. Maybe I will be thrown off here for being controversial and saying that. I am not saying, if you disagree with LP you are a negative person, it was just an observation of the people who got so heated about it and were very rude to this young guy, just airing his opinion. Am I allowed to say that? If not, just scrap it!

Oh no another long post, sorry I just seem to get carried away!! So much to say, or just verbal diarrhoea, not too sure, but I'll stop for now.

Love to everyone. I hope the last week of school goes well for those able to go!

Oh yes yes yes Pos Att - you are exactly right. The thing about LP is you need to think it could work for you and be open minded. How awful that people can be so rude!
If you are thrown off for saying that then I will be too as I agree with you. The thing is, it is up to everyone to make their own mind up but if there is something that lots of people have found successful, then shouldn't they share their findings? It's not like we are all complete suckers being sold a fake that does not work! Almost wish we had been there too to support - but not what dd needed yesterday!
WOW - you are a complete star re the education on the island. How amazing and how wonderful not just for you but for other children in the future.Am so pleased (if that is right word) that others think what you and your dd have gone through is appalling - because it is.
DD planning to go to theme park next weekend with mates! WOW WOW

Positive - well they can throw me off too!! I actually believe although I have never said it on here ,i don't think, that some people almost enjoy being ill with ME. What I mean is... that some people are defined by their illness, become important in their circles because of it and have no other life to live. I don't think our DC are like that AT ALL by the way. BUT I DO think that some adults are... Why would you dismiss something that is so successful even if you don't 'get it'? It's just so arrogant and wrong. I too feel for this lad, who presumably had felt quite nervous maybe about speaking to a load of adults. How very rude of them.Anyway - I'm so pleased you got to talk to education chap and yes, what a feather in your cap if you could speak to the bigwigs about your experiences. Wow!

Dwardle - I'm so pleased about your DD. You can look forward to a normal life now. Say goodbye to her!!!

Totally, totally, totally agree with you 100%, OM. Since day 1 I have been determined not to go down that road. I do positive!!!
They did answer a question about LP secrecy by saying that Phil Parker was now discussing his findings and being more open and working together with researchers, which must be a step forward.

Theme Park!! WOW how good does that sound for your DD?? Hope she has a fantasic time.

I am feeling really rebellious tonight (just back from the pub, actually) so if anyone wants to know address is directioneeded at aol dot com . Use that one and i can then give you my proper one, but I did not want to put my proper one here! - note spelling....how I have put it is the right way. One n in middle! (understand???? or is the wine talking rubbish????)

DH wants to set up a dadsnet.com cos he feels left out.

Am having major panic - dd woke this am with sore throat and cough - went to school and was sent home cos they have swine flu and are being v cautious. She looks rubbish but does not have temp. She is adamant that she is not doing cfs - she says she feels totally different. Don't think she is ill enough for swine flu.
Have emailed her practitioner for advice .Oh no!

Oh my goodness!! I hope she is ok. Must admit I am trying not to be a panicky mum too. DD4 had temperature/sore throat/headache etc. on Saturday and Sunday Today I am desperately trying to tell myself I feel well, but not really working!! DD3 (ME sufferer) has said that she feels really grotty today too - 1st day she has been unable to walk for a month. I am trying to keep my feet on the ground, but inside am panicking. Let me know what your GP says. I did think of phoning today, but thought they might think I was overreacting!! But now thinking maybe I am being negligent!!! Oh help, which way to turn. - the stuff on swine flu is so vague, but I am assuming DCs with ME would fall into the "high risk" category?????
Sorry, not exactly an encouraging post is it.

Did not ring GP as she is not really that ill- emailed LP person but not heard back.
She is a bit brighter now. FED UP!
You sound like your lot are in the wars. Not sure what swine flu is like! - despite having read 700 missives from the LA/HPA/whoever. Think temp is important - but am not totally sure

Dwardle - please don't panic! My DS has sore throat and temp. Lots of it here but NOT swine flu!! DDs school has 2 confirmed cases but says all should go in as they are just as likely/unlikely to get it in school as outside iyswim.
Please listen to your DD. She says she is not doing cfs so she isn't! I've had so many conversations with DD like this. She is just ill! If she's feeling brighter that's great.

Positive - have you gone on to nhs direct symptom checker? Phone GP and ask is DD is in the risk group and get some antivirals if necessary that seems to be what happens. It's not surprising she has had a backward step if she is ill. She WILL get better again. Hope you're feeling a bit better yourself!

Post tomorrow and let me know how you all are

Hiya - Have calmed down now but now I have sore throat too!
Lovely LP practitioner rang both me and dd this am which was really helpful - but we both still feel rough!!!

Pos - how is everyone in your house?
OM - thank you so much for calming me
Where is everyone else?
Choc - how are you getting on?
Nickschick - how is Sam? How are you?
Katsh - how is your little one?
21again - how is the tan?

Hi all,

Have felt awful for a few days, but coming back to the land of he living today. DD has suffered too, but seems to be recovering too.

Dwardle - Hope you are feeling better. Have you and OM finished for the summer yet??

Worst week of the year for me to be ill as I am trying to get ahead of myself with work, so that I can do fewer hours through the hols!

Hi Katsh, Nickschick, 21 where are you all?? Hope things are good with dcs.

Hiya .

Glad to see lots of improvements health wise in your dc - its great when things are improving isnt it.

We are ok here Sam is hanging on in and doing better at the moment.

Its now summmer hols so fingers crossed we all enjoy a happy healthy time.

Hi, hope all starting to feel better. we are still plodding on here. My parents have arrived to stay for 8 days so I am delighted to have reinforcements. Things aren't great at the moment, and I find the fact that CFS is such an uncertain diagnosis ( in many people's minds) that everyone who knows wants to suggest other possibilities and treatments. I appreciate the concern, but find it so hard to not become utterly overwhelmed by it all. How do the rest of you cope with that?
Another question for dwardle and opt - is LP something that anyone tries very early on post diagnosis, or is it something that potentially works to greater effect if you have had cfs for some time?
Sorry - bit of a down post, but thought I'd at least pop on here to say hello. Have a good weekend.

Katsh that things arent so great for you at the moment.

I know exactly where you are coming from its very up in the air 1 day at a time here too.

I have had people suggest so many things to me that I sometimes feel my mind is overflowing,im fortunate at the moment bcos I seem to have built up a 'support' network in some people and I dont feel quite so alone in the fight anymore- although this is subject to change .

Back in the land of cooking, cleaning, washing, ironing, shopping, gardening etc, and rain!!!!

DD1 at Heathrow as I write, waiting to take off for Miami (where it is also raining)! I must try not to worry, but neither of us like flying and so I will only relax when she is on dry land.

DH has gone back to work where they have had a suspected case of swine flu.

Trying to catch up properly with thread and hope to hear more good news from you Dwardle.

Katsh I have also wondered whether LP is good early on, hopefully someone will know. We actually have an appointment with a practitioner next week for an informal chat without DD. DH really is the cynical one so hope this will help him to understand a bit more. If anyone wants me to ask anything I would be happy to do so.

Hi to everyone else, will post again later on and hope you are all well. Tan is fading fast!

Lovely to hear from you both again.

Enjoy the holidays both of you and Katsh, have some time off while your parents are around!!

I still dread anyone saying "Oh my aunt (eg) had that for x amount of years and she did........" I have perfected the art of swithing off brain and thinking "What a plonker!!" while smiling inanely and nodding in the right places!!(i hope ) Everyone means well, but it can just be too much!!!!!!!!! Other than that stick your hands over your ears and run around the room like a lunatic screeching "get me out of here" at the top of your voice!! They wont say it again, but probably they'll call for men in white coats instead, and cross the road when they see you approaching next time!!

I think you just need to filter what you look into and what you take seriously. DD could be rattling with pills if we did what everyone suggested, not to mention a very bleak bank account!!

I am supposed to be working, so best be off, but love to all.

Thank you . Positive you made me smile! Nickschick, I'm sorry it's a bit all over the place for you too.
My parents comment after 24hrs with us is that I need to find a consultant I totally trust and then just follow their plan for management, and then confidently bat away all other suggestions.
Anyway gotta go, but thanks again for the understanding.

DD has shocking cold - not swine flu as no temp, but the nose, throat, head version. She says that is NOT cfs and I believe her. Then she dropped laptop on her foot!
Still got 2 days of school left and has just dawned on me that we go away in 1 week!
So all not brill in our house but am still positive.

Was v interested in posts about 'advice' I too got loads of unsolicited advice and just learned to ignore it! Katsh - sounds like you have great parentsAt low points it was really hard, though. I am with posatt on this one!

I think LP could be used early on but think you need to talk to practitioners - would need to find one that has done children.

Probably just a coincidence but I remember Optimistic's DD having the most dreadful cold after doing LP. That is all it was - a cold - but it really was a bad one. Maybe something to do with the immune system, or not...?!

Katsh I think everyone here has had the problem of too much well-meaning advice. It's impossible to try everything or take it all on board. We listened very carefully to our Doctors, but have since decided that you do definitely need to speak to experts on CFS. Our GP and paed were good, but not experts in this field and we know that some of the advice given by them was not good. Help is at hand but everyone is different and what works for one does not necesssarily work for another. It takes time, but you have the advantage of a long Summer break to try to establish whaat is best for DD.

Must go now friend has broken her arm and needs some help, back later.

Hi all.

Dwardle - so sorry your DD is not well but 21again was right, my DD had the most horrendous cold ever just after LP and all believed it was her immune system kicking in.

Katsh - I really believe you have to come to LP in your own time. You have a particular issue in that your DD is so young and it would need a very skilled practitioner to help her understand it. You are also in a difficult position in that as your DD is young everyone is getting involved in suggestions/care because people do at that age!! As everyone has said you have to filter it all out. You have to have your own plan and stick to it. Try not to get thrown off course by well-meaning others. Now I'm going to be a well meaning other and say you could do 2 things. First get access to a top consultant (GOSH or other) at a dept where they have a CFS outpatients service. Secondly, go straight to Phil Parker (LP) and just find out if your DD can go for LP if and when you are ready for it, so at least you know whether you can.If not I would recommend some CBT. I really hope this helps. It is sent with a lot af love from a Y3 teacher and a mother of a CFS child!!!!!!
Have a lovely holiday and try to have fun.

Nickschick - hope the holiday proves a fun time for sam and that he improves.

Positive - how are you????? Hope you're feeling better!

21again - so nice you're back! We all missed you. Swine flu is now in all my children's schools and I think that youngest DS might have had a very mild dose, but he's well now.

Today is the first day of the holidays! Hurray! I love this day best of all with the long holiday stretching out before us....

Hi everyone - Hope all the DCs are enjoying their well-earned rest, and that they will get some sunshine this Summer!!

Dwardle I do hope DD is feeling better and has beaten that cold. How is she now?

Positive you posted some time ago about your DD thinking she was better as soon as she started to recover. My DD was exactly the same, after each relapse she would go back to school and try to do everything thinking she could cope. Problem is, she wouldn't consider LP or even CBT for a long while as she was convinced she didn't need to. She is now a lot more open to those treatments and CBT has helped her enormously. Tomorrow we talk to the LP practitioner and I will hopefully get more information to help us make the decision as to whether she needs to try it. I think she would benefit, but it's not completely up to me.

Keep posting everyone, it's good to hear from you all.

Hi 21, thanks for the message. Are you nicely tanned?
Yes, DD does consider herself fine now. Which in one way is good, rather than accepting the illness, I suppose. At the moment she is improving in leaps and bounds and all going amazingly well. We are pushing the idea of relapses to the back of our minds and hoping that she will just continue to improve. I suppose the further she gets without a relapse the better. She does still get tired, but seems to be getting better at pacing herself. She is certainly not needing so long to recover from doing to much either. BUT I am also keeping my feet on the ground and not expecting too much too quickly.

Last few days at work for you dwardle and OM?

Where's the sun gone?

SOME OF US HAVE NOT BROKEN UP YET!!!!!
Will post when I have!!!!!!

Ooooops!! Sorry Dwardle. At least it's pouring with rain here if that makes you feel a bit better. Off to chat about LP this morning .

21 - Hope the LP chat goes well.

Dwardle - Yep raining here too. No beach today!! Unless I want to become a duck!! I am sure the sun is waiting for your school to finally close, then it will shine on the righteous!!!! (black cloud heading my way then!!) Don't worry I still have to work through the hols

Hope everyone well.

DD plans to meet some friends this afternoon. Hopefully won't have too much fallout to contend with later. Lovely to see her doing "normal" things again.