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!

Thinking of you 21!

Katsh - as usual I couldn't agree more with Dwardle and I also teach (Year 3/4)

Well, I am still trying to come to terms with what has happened . DD has left her school and is starting a new one tomorrow!

Earlier in the year we gave her the chance to move but she turned it down. The school she has been at since year 2 is a good school but very hard work. It has suited DD1 perfectly and DD2 has done very well there until becoming ill. All of her friends are high achievers academically, musically and very good at sport, as was DD2.

Obviously since CFS she has missed out on a great deal and has found it hard to watch her place in the teams taken by someone else. School as you know have been very good and have let DD2 work at her own pace and have helped her every step of the way, but this week she just broke down.

On Tuesday night she admitted how she felt and that she just couldn't cope with it now and asked to go to the other school. We agreed straight away to let her go in for a couple of days to try it out. It went reasonably well, but she then backtracked and couldn't decide, however she was not sure about staying where she was. It was obvious she couldn't make that decision for herself and so we did it for her yesterday, and I have to say the relief is pretty apparant. I know that changing schools in itself is a huge event and will have problems, but we could see that staying where she was would not be good for her. We were very aware of a change in her on Monday when she started back - despite my positive post on Tuesday - and we feared the worst was going to happen.

There will be lots of issues for her to deal with but there will be far less pressure academically at the new school with fewer sporting fixtures and she can still join the choir and have singing lessons if she wishes. I hasten to add that we have always been careful not to put DD under pressure over work etc, but just being in that environment must be difficult and I know that DH wanted her to change earlier this year although again we did not pressure her. Before CFS she was in the top sets in all subjects and obviously has had to move down which again has been a huge blow to her confidence.

I know we have moved very quickly and that in itself is a worry, but with GCSE work starting we felt we had to. I don't know what the teachers among you will make of it, and we will have to live with the consequences but DD was very unhappy earlier this week and is now much more relaxed.

One very positive thing is that she felt dizzy on Thursday and Friday - always a bad thing in the past - but has not had a relapse and I have heard her humming to herself this morning which is such a relief.

We have no way of knowing if this is the right thing to do and her therapist is away on holiday so we just had to take the bull by the horns as they say and get on with it. I must say DH has been an absolute rock in all of this whereas I was an emotional wreck and I know I would not have been able to make the decision alone.

DD has not worked with her therapist this Summer although that had been the plan, she certainly never opened up to him in the way she did with us and so has not benefitted from CBT as she should have done.

Only time will tell whether we have done the right thing, but I thank you for yor support. This thread has been a huge help to me although DH cannot understand it at all. Raphael, whoever you are, your comment meant a lot too.

I do think that if DD had been able to do Lightning we would possibly have avoided all of this, but she was never a candidate and so we have to make the best of it.

Hugs to all of you and I hope everything is going well for your DCs. I will keep you updated.

Wow ....no wonder you felt stressed 21! I suspect a new start with people who didnt know her before she was ill, will be really good for your DD. She will almost certainly be under a lot less pressure at a less academic school and will probably find it quite easy to do well academically. I know you finally made the decision very quickly, but you had done all the research beforehand so it's not as if you moved her without having all the facts available. My DD used to be at a very high achieving school with high achieving friends too - I think this is often the case with CFS/ME sufferers of this sort of age. Good luck to DD for tomorrow and hugs to you. I'm sure once she's "in" properly you will feel a lot better.

Gosh 21again.
I am so sure you have done the right thing - your dd's emotional wellbeing is absolutely central to how she copes with everything. If she is happier, and under less pressure - whoever is applying the pressure, inc dd herself, then she will begin to thrive again. Someone once told me it was better to be a big fish in a small pond than a small fish in a big pond and if your dd is in a less challenging environment, she has chance to shine in her own time and her own way (just like Posatt's dd with the basketball the other day) sorry - that was a very long sentence!
Completely agree with Choc's comments
I am sure there will be problems - there are whatever we do- but if she is happier, then that will carry you. Your DH sounds a brick.
I also share your views about this thread and the support - can't measure how much it has helped.
Big big hugs

Well done you 21 again. I am sure you have made the right decision. I know it is stressful starting somewhere new, but you DD can now be herself and not be compared to how she was before she was ill. Good friends, who have stuck by her will still be around, whichever school she is at.
I really hope this week goes well. I'll be thinking of you both. Please let us know how it goes.

And I also wholeheartedly think this thread has saved my sanity. Just to have others who know how you feel is great. As good as my friends in RL are, there is nothing like having a moan, or sharing a good moment with someone who know how crap it all is, or how just a small positive step can mean so much.

Bad day here today. DD has had trouble swallowing food again and ended up choking for the first time in a number of weeks and she is lolling around saying she feels bad. I really hope this is not a result of this past week at school!

So good to hear DD is doing so well Dwardle Long may it continue!
Have a good week all.

21again - I feel sure that you have done the right thing. In the end we all have to rely on our gut feeling. I quite agree that it was too big a decision for her to make. Can't really add much to everyone else's posts as I wholeheartedly agree with all of them!
Having met you both in the summer and from what you told me your DD certainly did long hours which can't have helped. It would also have been devastating for her to be dropping down sets and not being in the teams etc when she had been used to being there.
Well done to you and your DH who have obviously worked as a team. Don't write off LP because if DD does get symptoms she would certainly benefit maybe not from the original practitioner but from another one.

PAO - so sorry to hear your DD is having such a rough time. Don't be looking down that escalator though!!

My DD is still fine atm. She is much more sensible about bedtimes etc than she used to be and is so much easier to live with. She is also at a very high pressurised school but loves it (as far as any teenager can love school) . If I felt for one second that the pressure was detrimental to her health she would be out of there so quickly her feet wouldn't touch the ground!!!!! The biggest problem we all have is our DC pressurising themselves imo.

have a good week everyone! Big hugs all round.[smile,,

Positive I am so sorry your DD has been feeling so bad again, is she any better today? It may be a good idea for her to talk to her therapist again while she is feeling bad so that said therapist can try to deduce what has triggered this off, and also try to help her deal with the symptoms. One of DD's problems was always the fact that she rarely spoke to her therapist when she was experiencing symptoms and he therefore found it hard to help her (although I am sure he did do some good especially at the beginning of the year). Let us know how she gets on.

DD has not gone to school today - they want her to start tomorrow so will update tomorrow.

21 - a shorter week to start with then, which can't be bad!
Positive - sorry DD is so poorly. Hopefully she is a little better today.
Everyone else - hope everything is going OK & your DCs are coping with school OK

How is your dd today. Positive? Really thinking of you.
21again - am sure tomorrow will go well.
Choc - how is yr dd and how is the study going?
Katsh - how about you?
OM - glad things are good with you.
Hope have not forgotten anyone!
I am still holding my breath with a smile

Good luck for tomorrow, 21again

Tearful this morning in the car and obviously nervous. Am counting the hours to pick up.

Positive how is everything?

21 again - really hope today was ok for your DD.

Thanks for all the kind thoughts thrown in this direction. DD had a terrible weekend and yesterday we went to see the Paed consultant. I thought DD was looking quite unwell and i could see she was struggling to cope. The consultant was really positive and encouraging. She had not actually seen DD since June, (Phoned many times, but no face to face meeting) when we were feeding her and she was unable to stand, she was choking and had a real problem with her feet going black from poor circulation. So for the paed to see her walk into her office was a huge step for her. I can logically see why she was enthusiastic. However, I tried to explain that we felt she had gone downhill already. She said that we can expect to be up and down for the next few years, but should not go back to where she was just a few months ago.
DD has been at the unit for yesterday and today and does seem to be coping slightly better than last week. Maybe it was just the first week of it all being new and different after so long????
She really loves it there and all the staff are so caring and fun to be with. I cannot believe it really after all the crap lies not nice stuff we have had from her school. A breath of fresh air!!

dwardle - So pleased that your DD has done so well. Start breathing again!!

om - Pleased for you and your DD too. Long may it continue!!

Choc - Thanks for your support and encouragement. I hope your DD is doing OK.

Katsh - How are things with you and your DD. Has she been OK with school. Thoughts and big hugs for you.

All is well .

Huge sigh of relief tonight. DD has had a good day, she feels she is making new friends already and certainly seems happier. The nerves this morning were hard for her to deal with, but she did deal with them and does not seem to be suffering. I feel I may begin to relax a little as there are no symptoms showing so far.

Positive - it is really good to read that your DD is coping better than she did last week, what a good sign. Like my DD she has had to cope with the stress of starting somewhere new and obviously she is not as far on the road to recovery as my DD. If you think about it she seems to have dealt with a huge amount and is coming through well. This can only be a good sign .

I do hope everyone else is ok and thankyou again for your support, it means such a lot .

Im back .... sorry for not popping by more often .

21again I think you made the best decision to change schools and I think long term this will work out far better.

opmumma and dwardle,I think your dds are doing so well.

Hope everyone else is ok,choc n katsh we did pull ds out of school for almost 3 years but he was so insistent he wanted to go to secondary that was 'his' goal,it does work short term but for a sociable soul like my ds it is very limiting.

dd woke with bad headache this am so did not go to school today

Don't know what to think

Delighted to hear about your dd, 21again - brilliant news

Positive - that sounds like a good meeting on the whole! It IS progress and the unit sounds wonderful - am so pleased

Don't panic dwardle, How is she today?? thinking of you both.

Hello all.
Dwardle - hope that your dd is feeling a bit better today. Has she made it to school?
Positive - the unit sound great. I hope that things are a bit less exhausting and more stable this week.
21again - what a huge decision, but sounds like such a good one. I'm glad your dd is happy so far.
Nickschick - how is your ds? Thank you for taking time to respond to my query.
om - I smile every time I read about your dd!

We're having a mixed week. The weekend was tough because dd went to a friends birthday party ( sports party 1 1/2hrs) and didn't particpate but sat with me. HOwever that was enough to wipe her out for the next 24hrs, and leave her a bit drained. She went to school on Monday am for 50 mins but was in very bad form by the afternoon. Yesterday, at the request of her teacher I went in to talk to her class about her illness in order to try to encourage them to befriend her. It's a new school so she only knows 4 kids in her class. I was dreading but managed to hold it together in front of a class of 30 healthy 7 yr olds, but it really did take it out of me. Felt v. down since. Not at school today or tomorrow - hopefully back for an hour on Friday. I'm definitely not managing my pacing so well - you really have to keep very motivated don't you?
Can I ask who do you all " let it all out to?" I am very wary of talking to my friends too much, as I don't want to become that all I ever talk about is my dd, but at the same time one definitely needs an outlet for some of the stuff we're trying to deal with. Dh is great, but I don't want to bring him down too, if that's how I'm feeling. Thinking of asking GP for a counselling referral. How have you all managed?
Have a good day.

21 - that's really good to hear. Hope she has a good day today.
Positive - glad DD likes the unit. Just succeeding in doing a little bit will be positive for her.
Dwardle - hope DD is feeling better now.
Katsh - sounds like you did really well. It is tough when you are faced with how your own child should be x30. School sound really good and supportive though which is great. Your question is a very good one - I'm not sure I really offload on to anyone other than DH. I do talk about things with a couple of friends but after DD being ill for so long, I am acutely aware that they really dont understand the whole picture. I have met one lady locally who's DD has ME although more mildly. It was she who put me on to Perrins and we get on well. I really think the support of this thread and the AYME parents forum have been worth a lot to me. Counselling may give you strategies to cope. Sounds like you should definitely have a chat with your GP. Is he/she supportive. Remember that you need to look after yourself as well as your DD ...that goes for all of you ladies

DD is doing really well atm. After a brief visit to Hallmark last week, we went to Accessorize on Monday evening, 20 mins travel each way, parking on the blue badge right outside and around 15 minutes inside the shop. Not much but it is the first time in 2 years that she has been able to do this. She is loving "online school". She says she hadnt realised how much she was missing being in a class and learning environment.

Hope everyone else is doing OK

Dwardle - please,please don't worry!! It's perfectly normal for kids to take a day off in the second week of term. They are unused to the long hours etc etc. If it makes you feel any better my DD is also off today. She is 'DOING ill' ( NLP speak). When I questioned her at least 5 of her friends have been off already.She feels sick. Just make sure your DD is using the LP techniques to deal with the headache and try not to think that her ME is flaring. Hopefully she is back in today....

Katsh - really interesting question and I'm not surprised you're down. When faced with 30 healthy children it just serves to underline your own child's ill health. At my DDs Options Eve last year I cried on the deputy head when exposed to hundreds of healthy girls and their healthy parents. Hopefully that will make you feel better.! I actually have 2 great friends who paid me the honour of researching CFS/ME so they could talk to me with some knowledge and understanding. Otherwise I found this thread a complete lifesaver. I also had some 'talking therapy' myself so that I could support my DD effectively. I used 'human givens' as I really liked the mix of therapies particularly the hypnotherapy. It's vital you look after your own emotional health.HTH

Hi to Positive, Choc and Nickschick .

21 again - so sorry I pressed 'post' before I meant to! How are you and DD today? Is it still going well?

Dwardle - I meant to add that when DD was ill for the first time after LP, I phoned her practitioner for some reassurance. It might be an idea for you to do the same if you haven't done so already.

Thank you so much for all your kind words and support.
Just off to cinema with dd today was another day!
will post properly tomorrow.
dd's friends are so supportive of her that when a boy was making comments about her absence yesterday, they defended her so vigourously that a huge fight ensued!!! Glad she was not there

DD is a different girl now. I think she is feeling accepted by the girls in her class - who all seem really friendly - and she is wanted in the hockey team which has boosted her confidence hugely. She is lively tonight and happier than I have seen her for a long while. It is as if the pressures have been lifted from her shoulders and maybe a complete change was what was needed. She is no longer reminded of what she was prior to illness, or what she had become and what her limitations are. She has nothing to prove and can start from scratch. Does this all seem logical?

Dwardle - sorry about DDs headache and I hope she is feeling better now. What great friends she has and I hope no one was hurt in the fracas!!

Optimistic - hope your DD is also better now, you know she can cope and you don't have to worry about any relapses now.

Katsch - I have also felt the way you are. I can remember breaking down watching the girls in DD's year all running out to a games lesson looking so fit and healthy. Our paed did insist I took ADs for a while and they did help me. I wasn't sleeping and I know they are not for everyone but he was adamant that I should not allow DD to pick up on any sadness or negative feelings from me. I don't take them now and they just helped me through Christmas and early new year. I have always found it helped to talk to DH about DD and we have exhausted the subject on a very regular basis. Like Choc I have met someone else locally who has a DS with CFS and it helps to talk to her.

Choc - good news about DD, she is doing so well and it is lovely to read of her achievements.

Nickschick - welcome back, how is everything at the moment? Are you seeing any improvements?

Positive - how is DD today? Hope she is still able to attend the unit, it sounds a wonderful place.

choc, dwardle, optimistic, positive, 21again - thanks for your responses. Glad to hear that things have picked up for your dd 21. That all makes sense and sounds like she can just relax. On the subject of not going back to who they were pre-illness my dd and I were talking all about the different routes up the mountain that we all take ( inspired by the Hannah Montana song " The Climb" - little girls are very into it so we listen to it endlessly ). She said that she's gone off the normal path, and is on the " bit unwell" path, but that we'll all go up and she'll learn different things on her path, but will still be being " who she's meant to be" It's hard to remember that and not just wish for what we thought life would be for them. I found her very encouraging.
I think I will talk to my GP - he's not great, but worth a shot!

Oh Katsh ... what wise words from such a little girl, they brought a tear to my eye. I do think it is totally true that because of this path our DCs have been forced to take, they will get a different view of life from what they would have without their illness. Although there are lots of downs, they may well end up with a broader view of life and almost certainly will end up being more empathetic towards others.
Glad DD is enjoying school 21.
hello to everyone else - hope school is going well for your DCs too.