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!

Oh I forgot to add - Prof Findley also advised not to allow any injections for at least a year. I had already said no to the cervical cancer jab as I had doubts about DD's ability to cope with any side effects, and her relapse following a flu jab last year was very bad. The homeopath has also advised against for now.

DD is having another CBT session tomorrow and is feeling really good atm, she is positive about beating this for good and certainly her problems over the last week and a bit have been very minor compared to in the past.

Interesting reading up about Prof Findley. The more I read about everything the more unsure I seem to get!

The inevitable slump has happened today, but it could have been a lot worse. She could not have coped with this just a few weeks ago, so really good step forward.

As for the school, don?t worry about being devils advocate, optimistic. DD is adamant that she will not return to the same school where she was not believed and was treated so appallingly. She was made to feel so bad every time she struggled into school and ended up in the sick room after a short time, only to be left alone as they refused to call me and allow her home ? even after consultants letters stating she had CFS! The stories I could tell would fill a book I suggest a title -?How NOT to treat an adolescent CFS/ME patient and How to make a mum absolutely fume!? I really could not trust them to care about her enough, or listen to her if she ever needed to stop or slow down. I really could not face the constant fight I had with certain staff, sometimes daily. It put so much pressure on everyone. DD?s good friends are friends from out of school, so she is not that bothered and after not being in school for so long it seems like such a hugely worrying place now. The small tuition centre is her preference. They only have maximum16 pupils at a time and she feels she will cope better in a place that size. The fact that she would be entering year 11 in September is a good thing as they will keep her on at the tuition centre for 1 year, until she left there and we have many more options for post 16 education the following year, so timing could be perfect.

About the immunisations: Does this include the flu vaccine? I was thinking I would ask if DD could have it for next winter so that she had some protection against it, as I felt that she may be susceptible to viruses. After reading your post it looks as if I got that all wrong. I will have to do some more research!

Good luck for those tackling school this week!

Positive - the tutor centre sounds ideal in that case. I wasn't suggesting she go back to her school, just another one, but I forgot your DD will be in Y11 so it's perfect! One year to have help in a small group with GCSEs and then take it from there. If it helps, I have found that my DD hadn't missed as much work as I had feared. She got her end-of-years results and has done well considering so much she had to teach herself. I'm so glad that your DDs slump wasn't so far back. I'm not surprised. I think it's great that she is more positive in herself and that is reflected back in her health. Regarding the flu jab - I personally wouldn't give my DD it. I found that actually she avoided most of the stuff last year as she wasn't really out in the big, bad world!! She got ill just after doing LP because she went back to school etc etc.

21again - it's lovely to hear you so positive. I'm so glad your DD is almost there. Send her our love. We think of you both often!

Re the vaccinations - yes it does include the flu jab. We did exactly what you are thinking about Positive - DD's problems all started with flu and so we thought that by getting the flu jab we would be protecting her from the same problem again.

Unfortunately DD relapsed really badly, much worse than before, but we had been advised by our GP and paed that there was no reason not to do it. We have since learned from other sources that it is not a good idea and Prof Findley reinforced this. I suppose we have no way of proving that the relapse was caused by the jab but it is not a risk that I personally would take at the moment.

Thanks for your good wishes Optimistic, DD is full time now, and is really determined to beat this. Her CBT session went well again tonight and I certainly feel much more confident.

I'm not going to read 14 pages - so this may have been said already. Gluten can act as a sedative on some people, causing fatigue, brain fog and depression because you're constantly tired and can't life a normal life. Anyone suffering from chronic fatigue needs to try 2 weeks - as a minimum - on a gluten free diet. The first time I tried this it didn't work because I missed traces of gluten. The second time I noticed a real improvement and carried on - I now have the energy to exercise regularly and I'm slowly regaining my health.

While this will not be the answer for everyone it can explain why some people have good days and bad days. It isn't that they've "overdone" things but that they have eaten more gluten. It is cheap to try and could give your child your life back.

Hi Everyone
Sorry I have not posted for a while. This term is really manic and time just flies. First, thanks so much for all the comments. OM you made me smile about sitting at the back sucking a lemon! That is so not me that I was really relieved! Have been browsing through some of the practitioners on the website and also like the idea of staying away so that gives us more scope. I need to get a few work things out of the way and really sort this.
DD has had a really rotten 2 weeks BUT she is annoyed about it - I think she is getting her fight back! Was thinking about what you said, pos attitude, about the good days and the relapses. I think the good days give our dcs hope as they remember what it feels like to be better - so then the relapses are a pain but there is a good chance that another good day will come. Does that make sense?
I SO agree with you 21again about school - my dd is much better during holidays. This makes me unsure about doing LP during hols as it will be harder for her to feel the difference if she already feels well - I worry that if she feels great, she will not need to use the techniques and will forget??? DD has been having CBT since Jan and it has helped. She can use the techniques now - though is very reticent about discussing them!
Cho - would love to hear more about Perrin - have had that mentioned by others and I am very interested in osteopathy.
I totally agree about avoiding jabs - was agut feeling for me so relieved to hear others feel same.
Has anyone tried the gluten free 2 weeks? Know someone who has coeliac and it took MONTHS and private health to diagnose - basic blood test did not show it- and she is SO much better on gluten free diet
Am tired, frustrated and not a bit fed up - I just want my poor dd to have a happy, healthy life

Dwardle - I'm sure she will! As you say - get this term over and a bit of head space available to think!
Gluten thing is interesting.
I said this before but DD had an appointment at GOSH on condition that she had a coeliac test first, so that makes sense.

We still may go to GOSH - they were very nice, knew all about LP, have had Phil Parker in and are going to discuss whether they still want to see DD. She doesn't want to go so if they want to see her we will have to sell it to her!!At least I feel we are not wasting their time and that they know she's well atm.

We'll know tomorrow....

Nice to hear from you Tatt and Dwardle.

My coeliac blood test was negative, yet my health is massively improved without it. There are several of us over on the allergies board with similar issues and I also have a RL friend who encouraged me down this route. Really is better to try exclusion - after a blood test as the test doesn't work once you've excluded it. Blood tests are pretty good but not 100% reliable.

Thanks for that Tatt. I get the feeling a lot of the blood tests are a rather blunt instrument!

Hi everyone slowly catching up with your posts- Sam is the same some good days several bad- but we have had a major breakthrough with school{again}.

So nice to hear from you Nickschick!

Thanks op mumma

Hi everyone
Great to hear from you Nickschick.
Thanks for that info Tatt.

\O Hi dwardle .

Hi all,

good to hear from you Dwardle and Nickschick. Not a particularly good week here with DD3, but we have been worse, so I must not expect too much too soon.

Last day of exams for DD2. Prom tonight....how exciting!

Have a good weekend and enjoy the sun.

xxxx

Hi Positive, sorry DD is not feeling too good but glad she's not as bad as in the past. It is early days, but she has come so far in a short while. There will be setbacks and it is very frustrating for you and for her but try to focus on the pacing, you have seen how she can improve which is very encouraging.

How did the prom go for DD2? I am looking forward to hearing about it. DD1 had a fantastic time at the concert and is now gearing up for Duke of Edinburgh silver. I don't know how she is going to pack everything into her rucksack, DH is away and I think I may ask BIL to call round if she gets stuck. I am hopeless at this sort of thing! Just hoping for some reasonable weather.

How is everyone?

All good here even though DD had 3 days off this week - hayfever etc etc. Going to GOSH on Thurs even though DD is very well they still want to see her so that we don't fall out of the system - very nice of them and now I don't feel so guilty as they know she is fine. DD up for a day off in London!!

DS1 also at a prom last night with girlfriend and lots of friends. They looked so lovely and grown up. I felt like a real old bag - not good for our own self esteem when they are so young and beautiful. I can't believe I'm this old!!
Haven't seen him since but have had a few texts. Just so pleased the GCSEs are over - hurray no more nagging required!!

Keep positive, Positive. Things will get better and easier. Read through the posts from Jan/Feb and you can see how awful it was for me and 21again. I couldn't see how DD would ever get better but she has and so can your DD.

Sorry to hear about the hayfever OM, it can be awful but for some strange reason this is the first year for a long while that DD2 has not suffered with it.

Things are still good for DD and she seems to be coping with full time school well. The pressure is off somewhat now that the end of year exams are finished. She has had most of her results back, and considering how much time she missed and the fact that she did little or no revision, her grades are not bad at all. She is a much stronger person now both mentally and physically, and I can look back to when this all started and I think that although the virus was the trigger, there were other factors which contributed to her getting CFS.

I think that the only thing I really worry about now is DD getting a virus again and whether her immune system will cope. She has been taking a homeopathic remedy to help boasts her immunity and hopefully with the long holiday ahead she will be OK.

D of E equipment is all packed!!! I don't know how it all went in the backpack and I certainly wouldn't want to have to carry it.

Have you tried homeopath for hayfever? Good luck with the appt at GOSH.
My dd seems to be going backwards at the moment but she has 2 more exams on Mon and Tues so maybe she might pick up after that - main symptoms are tiredness, heavy and aching limbs. She managed a good long session in Costas with her mate so it can't be that bad! I agree with you, 21 again that she will be stronger when she is better and that the virus was only part of it. When dd was baby, had endless infections and antibiotics til her adenoids removed at 20 months, then tonsils out at 8. Wonder if her immune system not as strong?
21again - are you going ahead with LP? Have you thoughtabout it Positive attitude?
Lovely to hear about the proms - dd is invited to party on Fri first one since last year that she is planning to go to. Fingers crossed she will be up to it and if I was to place a bet, it would be that she WILL be! Hope all your dcs are having a lovely weekend and you all too - my dh has just bought me a delicious glass of something red so I will enjoy!

Hi all,
Thanks for the posts. Prom was apparently "awesome". She looked so grown up, lady-like and gorgeous. She was not recognised by lots of staff due to her major transformation. (usually seen in jogging bottoms/shorts and t-shirts!) I had not even considered the fact that I must now be really old! Thanks for reminding me, OM. Now feeling doubly bad and very old! I was more concerned about boyfriend knowing how lucky he is!

DD is struggling with the pacing at the moment. On good days she is better than she has been for months, but then insists that she can do way more than she should and we end up with the inevitable crash downwards for a few days. I know we are not supposed to do this, but I really need to get DD to understand this and not be stubborn! Unfortunately for her she has inherited the genes from the most stubborn parents on the planet.

21 - I hope D of E goes well, from my experience it is not the filling of the rucksack going out, it is the stuffed, overflowing rucksack coming back with the addition of copious amounts of mud, but a remarkably untouched wash bag! Nose pegs ready?? After one very wet, muddy expedition I even just put the rucksack and ALL contents in a bin bag and threw it all out as I could not face opening it up and sorting through all the mud. I preferred to pay for replacements! I would start praying for a drought if I were you! But always good fun and character building!

Anyway, enjoy the sun everyone and I hope DC's have a good week, whether relaxing after exams or finishing exams. Luckily DD3 has not had to do any this year. I am certainly not complaining - one positive side of the school given up I think. I knew I would find a positive to that if I looked hard enough!

Forgot to say about LP, I am at the point of doing lots of reseach about various options, not just LP, although I do confess to being a bit confused by it all and very unsure what I think about anything. DD is adamant that she won't be made to feel it is in her head. (I know you will say she won't be, but again I think her stubborness, and mine too could be a big stumbling block) We both like things black and white. Not keen on grey areas that I don't understand.

Positive - I understand your DD, as my DD was the same. She read through the LP application form and then asked me if it was her fault that she was ill. Obviously this is not the case but just her interpretation of the questions.

As far as I am aware CBT and LP use a similar explanation for what is happening now i.e that the brain has become used to certain pathways. DD can cope with a certain amount of stress but, when it all becomes too much, her brain is searching for the path to take and the first option is for the body to shut down. She needs to reprogramme so that other options become available, and LP does this in quite an intensive way whereas the CBT is a slower method. At the moment CBT certainly seems to be working for her and I think that as she was already well on the way to recovery, it will continue to do so. If she had not been getting better then LP would seem to me to be the treatment to try. Dr Findley told my friend that her DS didn't need to try LP as it would be like using a "sledgehammer to crack a nut", but he certainly recommends it in worse cases.

I suppose it boils down to the individual and how they seem to be coping. LP doesn't work for everyone - although they do have very high success rates - and neither does CBT, some people don't/can't apply the principles, and many get better without any treatment whatsoever. I think that if DD were not recovering then we would have done LP by now, and we are still open to perhaps doing it in the holidays although as time goes on she seems to be getting better and better, and is very strong and positive now.

Our DD was never as bad as yours Positive, she was always able to walk the few steps to the bathroom and most days would get out of bed and come downstairs for a short while, so everyone is different and it is up to you to weigh up the alternatives and decide what might be suitable for your DD. It is frustrating isn't it? We just want what is best for our DCs and for them to be well, but they will get there, Optimistic's DD is better and our DD is pretty much there now. Take heart and keep posting.

Hi to everyone else..

Positive - didn't mean to make you feel old!!. But..only...how did we all get here??? I still feel about 21 and every now and again something (in this case the school prom) made me feel my age. .

We all have to find our own way through this illness with our own children as only we know how ill they are and their personalities etc etc. It's just so nice to have a chance to chat to other mums in the same boat and to see how everyone gets through this.

21again - I certainly agree with you. I've said before that I think LP is the essence/concentrate of a lot of different therapies but that it's not the only answer. I also truly believe that everyone can get better over time anyway. We were just impatient I suppose.

I found a light up the nose type thingy for hayfever. It's absolutely brilliant but my DC look like Rudolph doing it and it has caused much hilarity chez nous!! Seems to have done the trick though and DD much better. I think it was the culmination of late nights/exams/hayfever etc and I don't think her stamina is back to normal yet. That's something we're going to work on in the hols.

So nice to talk to you all. This thread has saved my sanity this year and I want to officially thank you all!!

Have a great week.

21-Thanks for the very understandable expaination of LP. What you said makes far more sense than anything I have read so far!

OM - But I am 21! I live in a time warp and time stoppped 23 years ago.....unfortunately my body does not understand the theory and wrinkles and grey hairs try to convince everyone of my real age! I just started having kids incredibly young! They will overtake me in a couple of years time! Age is only a number and I say when you run out of fingers and toes to count on - STOP.

I am also very impatient, but I do think it is better to want to improve the quality of life for our DC's rather than just accepting that they are ill and will eventually get better at some point, whenever that may be.

I gave up on saving my sanity years ago, but I do agree this thread has restored my faith in there being some likeminded, positive mums out there who can smile despite illness. Thanks from me too!!

Dwardle - I meant to add this earlier, it is so good to read your DD is invited to a party and even better to think that at last she can think about going. I am looking forward to hearing how she gets on. Do let us know, and good luck for her exams.

Positive I agree about not just accepting they are ill. We have tried to be proactive and have thrown all our efforts into fighting this with DD. Our Paed did say at the very start that, in his experience, DCs with families who work together at this do tend to get better quicker.

Hi to OM, Choc and Nickschick .