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!

Choc - it is so good to hear from you again, we have all wondered about you and DD. It is fantastic to hear that you have been able to take DD out and also good to know that she is improving, although Perrins does sound very hard work and I imagine DD needs to be very determined. She is obviously on the mend now and you must be feeling so relieved. Tell her to keep up the good work and that we all wish her the best .

Choc. Great to hear from you again. Thanks for posting about perrins. Sounds as if your DD is making good steps, but sure its not easy. Hope it gets easier and the positives continue. Keep us posted.

21... thanks for your comment about CBT lady. The problem is me and DD, not her. We are both as stubborn as each other and just want to get through the next few weeks of the hols, then we will reassess life and see where we are then. We both like the lady, which probably makes it harder. When term starts again we both think that we can then concentrate ourselves more and focus on what we need to focus on.
Good news on the schooling front. Out of sheer frustration yesterday I phoned up connexions and spoke to someone there, who explained about another option that we were not even aware of. Looks promising as a back-up if the specialist unit cannot help. Only thing is we need to get the school to agree to pay for it, but I am prepared to really fight that one after the rubbish we have had to put up with from them.

hugs to all. Hope you are all enjoying the hot weather. Beach today.

Well done Positive, it is a shame we have to fight so hard for the help we need, and it is so difficult also to actually find out what is available.

Have a great day at the beach, will be thinking of you as I have a busy day today. Why is it that when it is sunny I seem to have arranged to be indoors? I am obviously doing something wrong .

Quick come and peal me off my ceiling.

Collected DD2 and DS from a camp yesterday only to find that DD2 had started to be unwell on the journey. Home and to bed. Worse today. She is feeling very unwell. Dr says it probably swine flu as a girl in her tent was sent home from the camp with it! Tried to stay very calm and decided that we have a big enough house to separate DD2 from DD3 to reduce the risk to her. Then decided that fresh air would be a good idea, so left DD2 sleeping and took others out to the beach. In the car on the way home DS announced that he was feeling really poorly and is now looking very pig like too!!!! So much for keeping DD3 away from bugs she has been with him a lot since they have been home and sat in a stuffy car with him today. I know there is absolutely nothing I can do. If she is going to get it, then it will happen! Dr was very good, but nothing to be done to prevent DD3 from getting it, advised tamiflu at first sign of symptons, but not too sure about that, it may be better to just ride it out?????. Fingers, toes, arms and legs crossed!!!!

Advice from Prof Findlay is that tamiflu is OK to give as it is anti-viral, a friend of mine had already emailed him to find out what to do for her DS with CFS, (Prof is anti vaccinations for CFS patients). My DD is currently taking a homeopathic remedy once a week to help in case she comes into contact with swine flu, it will not stop her getting it but may make the symptoms less severe. You might like to speak to a homeopath about something for DD3.

So sorry you have to go through this Positive. We are all at risk, but when suddenly confronted with the reality of it, it is such a worry when we have vulnerable DCs. Presumably you have tamiflu for your older DCs so will have some on hand immediately if necessary for DD3. Will be thinking of you all, please let us know how everyone is.

Oh no - what a total stress for you. How are they all this am? It may not help to know but swine flu has been around here for a while and most of the people who got it were not too bad. It also didn't spread as rapidly or as widely as we thought - some people who had close contact did not get it. Having said that, your dd is clealy more at risk. When my dd was ill after LP, Dr decided it was not swineflu as she did not have temp, but he said there were lots of other bugs around. Am not sure about tamiflu either - thanks for info from Prof Findlay, 21again.
DD gone off to theme park today and was stressed and did not sleep well. I thought - oh no - but seems that problem is more to do with going on fast rides - or being mocked for not going on them - than anything else. Was able to get her to apply LP process and she went off looking happier but I worry so much. When will this ever stop? I just want to wrap her in cotton wool.
Good to hear you have another education option PAO - let us know more when the awful stress of swineflu has settled. My thoughts are with you.
Glad to hear from everyone else - how is yr dd, 21again?

Dwardle - good to hear from you. I had thought that lightning would mean an end to all the problems, but as you have just pointed out, the worrying does not stop there. I hope your DD had a great day out - I'm sure she did - and she will get better and better at applying the process .

My DD is fine and has been enjoying the hols. She has spent a lot of time with friends and will be with grandparents next week, and I know they have lots planned!! I am feeling much more relaxed about her nowadays and I think she will cope when she goes back to school, I just hope we manage to avoid the dreaded flu.

How are things with you Positive, hope DD is fine?

Hi to everyone else, Choc it was good to hear from you, and Nickschick if you're around how is Sam?

Thanks 21again. Have a good meet up - look forward to hearing about it.Glad your dd is having a great time. I wish it would never end!

Hi all. Just managed to log on in the local library and read all the posts I've missed ( very slow!!).

Positive - I hope your 2 are feeling better despite their curly tails ( sorry shouldn't tease). Don't worry about your DD. There's no reason why she should suffer greatly from what I understand but anyway I hope all is better for you!

Dwardle - so glad your lovely DD is feeling as good as ever. Lightning cannot take away normal teenage angst!! We just have to remind ourselves of that. The further away you get from the treatment the easier it is imo.

Choc -lovely to hear from you and great to hear you are making progress with Perrins.

21again - tomorrow at 2pm. I'm sure we'll recognise each other...Looking forward to it!

Hi Optimistic - look forward to tomorrow

Hope the meet-up was good. I am sure you had plenty to talk about.

I am in desperate need of a rant to someone who can unruffle my feathers and understand my anger!!
DD has been becoming increasingly more housebound again over the past couple of weeks - yes cbt woman you were right!!! Today I decided that we needed to get some fresh air and so opted for a trip to the garden centre as we can park right outside in the disabled bays (we have a blue badge for DD). DD is refusing to get into the wheelchair during the holidays, just in case, shock, horror, she may be seen by someone from school. Anyway, parked up and got out of the car, displaying blue badge. Grumpy, old woman getting into car parked next door said in a very loud voice "none of them look very disabled, do they". Now whole car park looking!! so I became mrs open-mouth-before-engaging-brain and said in an equally loud voice."For your information it is my daughter (pointing to DD3) who is disabled."
"She doesn't look it. Do you have a blue badge to prove it?"
"Yes it is in the car and as for her not looking disabled, you should not judge. Ask her consultant!"
Then an incoherent mumble to her friend, a giggle and another look!
Me now seeing red, DD3 sobbing behind me. "Look what you have done. Are you pleased with yourself now?"
"Well, she looks well."
"I can assure you she is not, but I don't feel I should have to explain myself to you."
I stood with arm around DD expecting an apology, and all the silly bat woman did was stand and stare, tut and raise her eyes to heaven.
I then asked her "Have you got anything else to say" (eg sorry)
"Well, my dear." to DD "you are lucky you look so well!"
More loud sobs from DD and I walked away with fume not only coming out my ears, but EVERY PORE OF MY BODY!!
Total ignorance! Is it something about where I live?

Oh to top it all we went to the cafe for a drink and cake to feel better, only to be charged full price when I am supposed to get a 20% discount (due to DH being manager of garden centre). I was too wound up to go and say anything!

I can now think of a million comebacks to this silly woman, but how come you can never think of anything to say at the time? Now DD saying she wont go out even without the wheelchair if people are going to think that of her!

Sorry for long rant! I feel better now!

oh Positive you poor thing and poor DD as well. It is so easy to think of the exact appropriate cutting reply after the event, I am seething for both of you, what an ignorant woman! I think it is totally understandable for your DD to be reluctant to go in the wheelchair, now she can manage better, mine is the same. Sorry she hasnt been so good, unfortunately I think it gets harder when they improve in a way, as it is so tempting to do just a bit too much. Anyway DD has recovered a bit now and you too. Have a good weekend.

That happened with a friend who has lupus, and has good days and bad days, but is my age and has a disabled badge.

The offending creature got a blow by blow account of everything my friend had wrong with her, how long it had been going on for, and all the medication she takes, not to mention the pain she was in. The old bag was cringing by the time she'd finished!

I do feel desperately for your poor daughter, and I reckon I would have done the same as you.

Hope you and DD are OK today Positive.

Positive that is dreadful and I am so angry for you. Some people simply do not think and have no idea of the hurt and upset they cause, or simply do not care. The woman was stupid and ignorant but that does not excuse what she said. I hope you and DD are feeling better about everything now, and like you I would only have thought of a suitable retort after the event.

Be sure DD takes things easy today and think about pacing her activities. Perhaps, from a positive point of view, you should tell DD that she does look well and that that is a good thing as she is on the road to recovery and so much better than she used to be.

I did have a good meet up with Optimistic and her DD who is gorgeous and looks fit, healthy and full of life. My two DDs did some shopping and joined us for a chat and the three of us certainly enjoyed it. Optimistic is away for another week so don't know if we will hear from her for a while. She certainly has been enjoying some good weather.

Hi all,I hope the meet up went well.

Thanks for all the sanity talks! We have survived!! Dd does seem reluctant to go out, but not too sure why at the moment. If it continues I will broach the subject with her. Not sure if it is because she is struggling so much again, or because she does not want to be accused of not being ill again. A bit softly softly at the moment as she is a bit fragile. Not very happy about the short-lived recovery, that she thought was forever!

DD struggling again here. Oh Mrs CBT !!!! Not looking forward to her visit on Wednesday. She would have every right to say "I told you so" I will hang my head in shame!

Family picnic birhtday party today for my 18 year old Neice. Made me aware of how much I miss 18 year old DD . DD 3 came just for about 30 mins. She sat in the heat of the sun with a blanket wrapped around her 'cos she was cold! Home to sleep and still knackered now! We are all tingling from sunburn!

Hope you ahve all managed to enjoy the sunshine. And I hiope all DD's are still doing well and enjoying "normal" teenage life.

{grin]

Don't beat yourself up over it Positive. All any of us want is for our DCs to be able to live normal lives. Your DD had some good times but it does look as if she pushed herself a little too far, which is so easily done. I'm sure Mrs CBT won't be harsh.

My DD had a bad week last week, didnt pick up at much after the Perrins treatment. However, after having her treatment this week, literally within minutes of the lady going, she was much brighter and she has felt much better ever since. It seems as if some toxins had got "stuck" and were cleared by the treatment.

Hope you all have a good week.

Choc is right Positive, it is so easy for them to overdo it at times especially when they feel good, and the car park incident obviously set her back a bit. I am sure the CBT lady will understand what it has been like for you all, and will help DD to get over it .

Choc the Perrins really does seem to be helping your DD, it is great to read that she is feeling so much better. What other illnesses does Perrins claim to help? I ask because I know someone who has recently been struck down very suddenly with rheumatoid arthritis, and she is really struggling to do anything at the moment. I know there will be drugs etc to try, but she herself has mentioned "toxins getting stuck".

Hi to everyone else, hope you are all ok amd DCs staying well.

First message for me on Mums net. Friend suggested I try it to find like minded people who have experience of Chronic Fatigue Symdrome.
Recently diagnosed withCFS after 18 months of feeling hellish and now with a diagnosis am desperate for some route to follow to improve things. From reading the comments I think most posts are from Mums who have children with CFS/ME. Any advice on what to do?
Are there any Mums out there who have CFS? Any tips on how to pace yourself with a 4 and 5 year old to look after?

Hi Calgal - couldnt let your post go unanswered. I really feel for you, it must be tricky. Yes, the regular posters on this thread are all mums of children/young people with ME. I think I have come across a couple of Mumsnet posters with ME but it was a while back. You would probably have more luck trying to locate them on the General Health Board. However, there are various ME type websites with a wealth of info and support - the ME Association is the one that springs to my mind ..oh and Action for ME. There is also a very good forum called "Foggy Friends". I can imagine that pacing with a young child must be a complete nightmare. I can only suggest things like resting when she is at school/nursery rather than doing things, not feeling guilty about sometimes "parking" her in front of a dvd. Do you have a partner? If so it is going to be hugely important for them to take a lot of the responsibility regarding things around the house getting done. Do you have a supportive family/friends? There may also be support available from social services direct payments. I do know from my experience with my DD, that pacing really does work but you do have to really limit your activities and be very clear about what constitutes high energy activities. I'll look out for your reply.

Thanks for your reply chocaholic73 - I like the idea of the aptly named Foggy Friends - I have just noticed that there are other post topics that are relevant - the fogginess meant that I had missed that. Trying to get to grips with the idea of pacing. Still working so no rest when kids at school. Too pig headed to give in until I'm on my knees (although I do know that this is the worst thing to do, I can't seem to do the sensible thing until pushed to the limit) though I know that I will have to make changes as I'm not managing.
Fortunatley I have fantastic boss and a very supportive family. Husband does not really understand what this is and expects to be thanked for doing tasks for me (like anyone ever thanks us!)He cant understand why I can manage to be at the computer and not manage the housework. Though I cant complain this week as he is sending me to a spa for the weekend.

Calgal - the danger with pushing yourself so hard and "not giving in" is that it will make you worse in the end. That is what happened with my DD and some of the others on this thread. Because of the requirements of education and the fact that we are all brought up these days to think of education as top priority when it can, in fact, be made up in the future, I pushed my DD to attend school when she shouldnt have gone. Eventually, she could take no more and ended up bed bound for 7 months and has now only just started going out for very short occasional outings. Although you are an adult with family responsibilities, your situation is not dissimilar. You definitely need to get your husband to understand your health issues - show him the stuff you are reading etc - here is a good explanation of the energy implications although it wasnt written by someone with ME www.fms-help.com/spoons.htm. What is your medical support like, have they given any guidance to you? I dont want to tell you what you should or shouldnt do, but I am concerned that you are doing too much and feel you really need to ease up. Take care.

21 - just realised I hadnt answered your question about perrins. I dont think perrins itself claims to treat anything else. He is an osteopath who discovered by chance that certain techniques were helping patients who suffered with ME type symptoms and it went from there. There is a website and a book if your friend wants to delve further. DD has definitely improved, no doubt about it. Unfortunately, as he says in the book, as you improve, in someways it gets harder because you can see more of the "mountain" ahead that you still have to climb. That sounds negative and isnt really meant to be. It just is scary when you look ahead and wonder how on earth she will ever get to the point of being able to lead a normal life.

Choc - thanks for that, the Perrins site certainly makes for interesting reading. I am so pleased your DD is improving, it is a long uphill climb but she is getting there. Keep us updated on her progress, it is good to know about others' improvements .

Calgal - This is so difficult for you. CFS is a dreadful and bewildering illness and for you to have to deal with a family and a job while suffering is simply too much. Choc is right that pushing yourself can lead to a worsening of your symptoms, but I can see that you are in an impossible situation.

Read through this thread when you get time and feel up to it, we are Mums with children suffering and we have learned a lot about the illness. It will help if you persuade yor DH to find out what he can about CFS, he needs to understand. There are some good websites with information on pacing yourself and you could perhaps get your GP to refer you to talk to a specialist, that way you will understand a lot more and perhaps your DH can accompany you so that he can ask any questions that he will undoubtedly have.

I do hope things get better for you, if you look at the beginning of this thread there are some adults who did have CFS and some of them may be able to advise you more. Take care...

Hi Calgal, sorry to hear about your diagnosis of CFS/ME. It must be really hard having to keep up with a DC and trying to hold down a job too. I hope you DH learns more about it and can understand more about how you feel. A least with teenagers having it they are able to not have any responsibilities to have to worry about. A whole new ball game I guess.

Huge sigh of relief here. Mrs CBT has been and we have survived! Not too much of a told you so. She was very encouraging about how far DD has come and cleverly reminded us of how ill DD was just a few months ago. She was also positive about her schooling starting in a few weeks. She is going to have a word with the headteacher of the specialist unit tomorrow, so I am hoping we will eventually know more about where she may be starting. She has suggested that DD starts with an hour a day. DD very excited and hopeful. I will have my fingers crossed!!!

Hope you are all doing well still. Interested about perrins! I am glad your DD is feeling better again after the "stuckness".

Love to everyone,