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
Thanks for the message 21 - really appreciated. Will keep you posted.
Who is going to London on 11 July?
Totally agree about explanations of LP and about fighting together - our consultant said similar and is why we have gone for emotional wellbeing over school work, however hard that has been!

Meant to add- dd and her friend were discussing relationships with mothers yesterday and both very positive, when comparing with friends. One positive for me is that I feel that we have a good relationship and talk and that cfs has actually helped because I have had to learn to let her be in control and have had to learn to be tactful and calm to avoid stress. In doing so, I have realised what she is capable of if I show trust so conflict is avoided. I would not say we are 'best friends' because we are mother and daughter and I have some great RL mates but I think we have a good understanding and enjoy each others company. Have you found that actually cfs has helped in the tricky teenage years in this aspect?
Very deep and reflective for a Sunday night!

I am going on the 11th! Loooking forward to a day away!

Dwardle I understand what you mean about your relationship with your DD. I think it has brought us all closer because we have actually had to sit and talk things through in a way we never did before. I certainly feel that my relationship with DD is good and we do talk a lot. I do see her pulling away though and trying to be a lot more independant, and I have had to step away from the role of nurse and back to more of a parenting one.

DD had a bit of a sore throat and felt nauseous all day yesterday, however she is much better today and managed sausages this morning for breakfast!

How is everyone?

Please can I move into your house 21again! Like the breakfasts!
Dd has just done the 3rd of 3 GCSE modules and to be honest, she has been in a state. Just hoping that she picks up now the stress is over.

Hello everyone - I don't know if I should post here or on a new thread, but have been told today that the likely diagnosis for my 7 yr old dd is cfs. We've had 2 months of exhuastion and a lot of testing, so I guess we're now into management. Can you set me in the direction of some good reading - web or books, so that I can start to get my head around this. I would also love to hear from others with young ones who have cfs. I'm very sorry if this is the wrong place to post. Thank you. ( may not get back for a while - I'm in the bathtime / story hour!)

Katsh, welcome to our thread although I am really sorry that it is necessary for you to join us.

If you get the time, read the posts on here as there is a lot of good information, and you will see that although it is a difficult illness to deal with, your DD will come through this but it will take time.

It really helps to "talk" to other mums who know what you are going through and I have found everyone to be so supportive. It seems that no two people are exactly the same when it comes to CFS and therefore not all remedies work for everyone.

What treatments have been recommended so far? I think most people on here seem to agree that a holistic approach is certainly beneficial as well as the pacing that we have all tried. I will look up various reading material and get back to you on that one (unless someone else does that).

Tell us about your DD and how it all started and do keep posting here. We will help all we can.

Thanks twentyone. I will read the whole thread when I get time - I'm sure I will learn a lot from it. I have 2dd and 1ds. It's my middle one, dd2 who has been unwell since April. She's not too big to begin with, but she lost weight, had stomach pain, nausea and exhaustion. We saw a very diligent Paediatrician who had her tested for many things, and everything was clear. We had an appointment set up with a gastroentorologist for today, but last week she was seen in a & e as she was deteriorating. She had reflux as a baby and they thought it might be still affecting her so she was started on reflux meds and had more investigations. They are helping and she feels less sick, so will hopefully be able to eat a bit more. Today, having excluded all other possibilities, the Consultant concluded she has reflux, a possible ulcer ( which they are testing for) and cfs. She has been off school for most of the past 2 weeks, and the dr said she should try 2 hours every other day. School haven't been great, so the consultant is writing to them. V. supportive doctor. I am feeling very overwhelmed, and as well as being so sad for my dd I have no idea how family life is going to shape up for all of us with this new situation. Tonight I can't quite see how I am going to juggle everyone's needs alongside my dd's needs, but I know that it will be 1 day at a time. I'm sorry that you are on this thread too, but glad you answered my post. Thank you.

Welcome to you Katch! but also sorry that you had to join here!

A very good website is www.ayme.org.uk. They have a helpline and I have always found them to be incredibly helpful and calm.

Its all a bit overwhelming to start with, and I remember feeling very confused. One moment I was happy it wasn't anything else that DD had been tested for, then panicking because so little seemed to make sense on CFS. - if that makes sense??

This thread is brill!! I sat and read through the whole lot before I posted and learnt so much. A mine of good ideas and tips. You are not alone!

Love to everyone else too, hope the week is going well. Glad the exam stress is over, dwardle.

Someone mentioned to me today about someone who had CFS diagnosed, but then it was discovered to be caused by braces on her teeth! Sounded incredibly wacky to me, but I am slightly concerned as DD has a brace and was supposed to have it removed in December, but she has not been well enough to get there so far, so still in place. Anybody heard of this before, or do you all now think I have lost the plot totally?? Is it April 1st???

Just popping in to say 'hi'.(Anything to get out of writing reports!)

Welcome too Katch. Whatever we can do to help we will...

July 11th - not going to seminar, but it would be fun to meet up at some point in the day. We could all wear red roses or something!!(Am I being weird? It's late and maybe I've lost the plot too!)

Hi,

July 11th - I was planning on coming up as early as I can in the morning and spending a bit of time wandering around the shops !
I'd be up for meeting for a drink or something before the conference. It starts at 12.15, so there will be time. OM if you know the area, you pick the time and place and we can all say hi! (or run a mile???)

Hope the report writing is going well. DD, who has not been in school since October and had not done 1 sports lesson all year was amused to get an "Outstanding" in her report, especially as she had spent months being unable to stand! We had a giggle about that! I think a teacher hit the wrong computer button!

Sunshine is here, afternoon of book reading in the garden! MMMMmmmmm!! I try not to feel too guilty as DD is snuggled up with blanket asking for the heating to be turned on! Grrrrr! Have a good day everyone!

Positive, "braces" is a strange one! I've not thought of it before but DD was fitted with one of those horrid retainers six months before becoming ill. It had huge bits of plastic in it to bring the bottom jaw forward and push the top teeth back and was very uncomfortable. She wore it full time for a year and at night for another six months. Maybe it was just another of the stresses that combined to cause her body to just give up. I know that she was at an all time low both physically and mentally when she had flu so there were lots of contributing factors.

It will be great if some of you can meet up, we are away then so sorry not possible to join you but looking forward to hearing how it goes. Don't forget to ask lots of probing questions if you get the chance at the conference.

Katsh your poor DD has had a rough time and it is so hard to have to watch them go through this. Don't know where you live but have a look at Dr Esther Crawley in Bath who specializes in this, you can visit her from out of her area and several on this thread have seen her. Another expert is Prof Findley in Essex and a friend of mine has taken her DS to see him, if you want to know more about these two just ask.

Our DD has been very happy with the homeopath she is seeing and I think it has helped her to talk to different people about this (she also is having CBT at the moment to help cope and that is definitely helping). Optimistic's DD got a lot of relief from acupuncture but in the end did the lightning process which worked brilliantly and she is completely cured, it does seem to take a while before they are ready to do that though.

Hope the sun is shining where you all are, it certainly makes things seem more cheerful. Hope for more good news about your DCs, DD has a sore throat and feeling sick at the moment but is coping.

Just lost a long post aargh! Forgotten what it was I was saying....

Positive - maybe we could meet for a coffee on 11th with Dwardle at about 10.30/11.00ish. I'll have a look over the thread to see where the conference and then we could meet near there or in Covent Garden or something! I'm just giggling to myself at the thought of saying'Hi, I'm Optimistic you must be Positive!'

Your report comment made me laugh. We had 'She needs to improve her striking and throwing skills' ( DD had done no PE for the entire year!) I thought to myself ' I'll show you MY hitting and throwing skills - they're well honed!' I hate computer generated reports and can't bring myself to do them - it does take ages though.

DD and I are going to GOSH tomorrow. I am feeling very nervous as I really want them to take care over how they frame their questionning etc. It's important for DD to regard her illness as a past event particularly as she is struggling with hayfever at the moment. She is finding school tiring...roll on Summer when she is less affected.

We had a bit of a shocker yesterday when DS1s school phoned to say there was an incidence of swine flu at the building where he is doing work experience! Once I had stood myself down from panic mode it was fine and I made him promise me he'd wash his hands at least twice as often as usual ( that'll be twice then!). What could we do? I just thought why us? Why can't some other family have to deal with this!! But as DD says at least if she were to get it now she'd have some immunity for when it'll be with us in the winter. AAaaargh!!!!

Hope you are all enjoying sunshine. A good book and Wimbledon are some compensation I suppose!!

oo er rather a long post - sorry.

Hi everyone
Hope the report writing is going well om- am reading through them at moment arghh arghh
Would love to meet on 11th DD and I are hitting Oxford st(circus) at 9 as conf is only a couple of roads away- so think by 11 I will be exhausted and spent up!
Am missing sun as my office has no windows and have been stuck in it all day sob sob! DD is under the parasol in garden so this is me at moment -
Hi Katsh - agree with posts about a) this thread and b) ayme site. Never got a book as did not find one that appealed. Also liked the GOSH site v much and downloaded stuff from there.
My dd not better yet so am not one to offer advice about that - am still taking it in from others on site, but I do know about schools so if I can help on that, happy to. Really feel for you but remember that things will get better and you and your dd will learn to cope. I used to drive to work every am in tears but now only cry when I am there (only joking!) I found knowing that others had same feelings as me and dcs had same symptoms made all more easy to cope with. It is horrid but you are not alone. Also helpful was knowing that people do get better - OM's dd and many others and that you have supportive drs
Good luck tomorrow OM and also with swine flu - what a pain.Could you get him a mini bottle of hand gel or would he rather die? My ds would refuse point blank but his approach to handwashing sounds like your ds's.
Laughed about reports - same happened here! DD had great tips for subject she had given up.
Braces is a new one and my dd has not got them , but.....!
Enjoy the sun

Hi all,

I have so far resisted the urge to phone my dentist and ask her opinion on the braces issue due to the fact that I would probably be laughed at!
I am trying to track down the person who passed this weird info on to my friend, so that I can see if she is sane enough to look further into it! I certainly can't find anything on the internet.
I seriously think I am cluthing at straws, Mighty wierd ones at that.
I will be practising my "Hi I am positive!". I suggest we say it very quietly, or we might get funny looks!
Loved the sun, book and wimbledon! Another advantage to having to reduce my work hours!

Yes but I would far rather say Hi I am Positive than I am Dwardle! How on earth did I pick that one!

Thank you postive, optimistic, dwardle and 21. On day 2 of diagnosis it's great already to know that I'm not the only one who has felt all these things, and has so many unanswered questions. I plan to print off this thread and have a good read. Thanks for pinpointing a few sites for me. I know so much more about CFS tonight than I did 24hrs ago . In my overwhelmed state yesterday I'd forgotten that we had building work starting in our house today - not a great experience for dd2 I'm currently planning an escape to the in laws for a few days from tomorrow to give her somewhere quiet to be. I think the company of 76 yr olds will be just about right for her at the moment. It is all so hard isn't it? I'm so heartened by reading your posts, and hearing of the improvements that some of your children are experiencing. I've just written a long email to the school she's moving to in September ( infants/ juniors system) to try to get things set up for her for then. I'd love your expertise on schools dwardle. I've no idea what to expect of them. What ages are your children and for how long have they had CFS? Thanks again for being here.

sorry, that last post is total "Stream of consciousness" incoherence, but that is unfortunately my current state of mind!

Hi Katsh
I do a very good line in incoherence!
My dd is 15 so quite independent. She just goes to school (on a negotiated reduced timetable) when she feels like it for as long as she feels like. A big issue for her was panic attacks so we took the very hard decision not to force school. This was discussed with camhs and her consultant.SO Hard.
Is a whole diff ball game at primary and I think you have to go with how your dd is and what you think she needs. My dd's consultant was very helpful here and went to school. I am a big believer in getting everyone together to discuss things. This may be called a multi agency meeting and is good if if you can get Doctors there. Another idea MIGHT be to ask for a CAF - common assessment framework. This may be better waiting for later if things are not working - not sure as depends on attitude of yr school and what the LA is like. My dd feels part of school still, whixch I think is v important. To be honest, sept is a long time away and children with cfs change. I would not be in a hurry to firm things up. There are people out there to support and help but you need to have a think about what would suit yr dd. I would try not to stress about missing school too much - I think mental wellbeing is vital - for you both! Key thing - do not be scared of anything like ewos -esp as you have great drs.
What does everyone else think?
Sounds like a good idea to go to inlaws - peace and care are wonderful!

Agree with all you say, Dwardle. As a primary teacher with a Year 3/4 class I would like to hope you will have an easier time at junior school than secondary because you are really only dealing with one/two crucial people. I would go in before the end of term with some info for the teacher and an idea of how much school she will be attending in September. It's very difficult for US to understand and not a common childhood illness so a sheet from ayme 'what is it like to have ME' should do the trick. My main message to you, Katsh, is don't stress about school work because it's so easy to be influenced by the 'mother mafia' comparing reading ages etc etc. I'm sure your DD will be fine even if she misses lots of school. Her friendships really are more important.
My DD is just 14 and had CFS/ME for 2 years. We did something called the Lightning Process in March which seems to have done the trick. However, I think it would be quite difficult for a 7 year old to access although our trainer says it is possible with puppets etc. What are your daughter's main symptoms (apart from the fatigue?)? I only ask because it is possible to alleviate some of them using alternative therapies.

Good luck with your reading and take heart. Nothing ever stays the same and your DD WILL get better.

I am very good at incoherence too!
Dwardle, You have shattered my illusions! I seriously thought your name was D Wardle, or D W Ardle! I have you down as a Debbie, and very sophisticated and sane! Oh dear, where did dwardle come from then??

Can I ask a personal question on here as I have something to say depending on your answer???....... I am a Christian, is anyone else a Christian on here? Don't worry I wont preach!

You were all up interneting late last night weren't you?

Another fabulous afternoon in the sun, with a friend! LOVELY!
Oh but DD not so good at the moment, I think the heat is draining her. BUT she is still able to walk, even on bad days!

DD has a throat infection and still feeling nauseous but it most definitely is not chronic fatigue. GP said to keep her off school and beware of sending her back too soon to avoid any possible pay back. I have no idea where she picked this up as none of her friends or family have been ill. I suspect that she is still not strong enough to ward off an infection. Fingers crossed that she manages to fight it properly, it will be a big achievement health-wise.

D of E went well and DD finished with only three blisters and a few nettle stings!

Hi to everyone, look forward to hearing from you .

Hi All
So sorry to hear that your dd has throat infection - pain. Am sure she will soon pick up. Is she on antibiotics? Glad Dof E went well. No mud???
Totally agree with Optimisticmumma - esp bit about mummymafia.
Answer to your Q Posattitude - not really ie not practising but have lots of friends who are so not an issue for me!
Am intrigued!.
Think I fancy being called Debbie!!!

Positive - your post wasn't there when I wrote earlier so only just read it. I don't go to church although I used to regularly, I certainly do consider myself a Christian, but perhaps not always a very good one!!

Dwardle - hadn't thought of you as a Debbie but I am quite annoyed not to be able to meet you all in July. Strangely enough, in my mind both you and Optimistic look exactly the same - how weird is that?!!

No mud!! They had no rain just beautiful sunshine, which certainly makes the task much easier.

Optimistic - looking forward to hearing about the visit to GOSH, hope the journey was OK and you and DD had a good day together. So glad you still post on this thread even though your DD has recovered, your wise words are always appreciated. Have left a message on the LP answerphone re doing lightning during the Summer. I really do think DD could still benefit from it hugely, as could I if I accompany her.

Positive - not with a capital 'C' and not particularly practising but I do teach in a Cof E school and used to sing in a Gospel Choir! Why??

21again - It is funny how we must all envision each other. If Dwardle was called Debbie it could take a while for me to stop calling her Dwardle.
We had a real day of 'closure' today where the wacky LP world had congruence with the conventional nhs world.
It was great, we saw the consultant paed who askedd DD if she minded 'raking over old ground!'. The whole history was gone over and he reiterated that no-one knows why some DC are vulnerable to CFS, but that it wasn't a case of 'finding a cure' but working in the way we all have. He felt that GOSH and other specialist's out patient service does the same as LP but in a slower way. He felt that DD had been well on the way to recovery and that she had been ready for LP. He has met Phil Parker who has spent time in the dept and they are working on some things together. He said that he felt DD had recovered but that if we needed them in the future for any support we could see them again. If she had a set back it was unlikely that she she would go right back, she shouldn't fear illness but that if it happened she wasn't to blame herself! Phew!
She did a fitness test with the physio who said her actual fitness matched her perceived fitness which was good and that it would improve over time. Finally the consultant said that a mild/moderate case of CFS took 2-3 years to recover from and so we were on track!!

Hope there's something useful in there for you all.

21again - I really feel that your DD would benefit from LP and as far as staying on the thread is concerned, I enjoy it and feel I have a group of cyber friends. It's also nice to hear how you are all doing.

It's a bit bizarre meeting up. We are doing the thing we tell our teens NOT to do, so I'll make sure I tell my mummy where I'm going just in case!!

Katsh - hope you have had a better day. Make sure you push for a really good Paed consultant. Are you in the London area. We had to go via another consultant to get an appointment at GOSH, (ie a consultant has to refer up the chain not just your GP) but I was thinking of you today and wished I had known about the CFS out patients services available when my DD was really ill.

Sorry all - v. long post again. Would someone PLEASE tell me to get on with my reports, I'm even ironing now......