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!

Optimistic - hi, hope everyone is feeling better now.

Katsh - So sorry to hear that dreadful news. It does make you sit up and stop taking things for granted. I hope your DD has had a better day today, and also that your Mum has improved overnight. Thinking of you..

Hi to everyone else, how are things?

Katsh - Sounds as if you have had a tough week. How is your mum doing?

I have come on to give you a bit of an update on DD3. I have struggled to not share this with you all, simply because in the past I have said this sort of thing and then everything goes so wrong. I feel as if admitting things is a bit of a jinx!
DD has coped really well with the trip away last week. We have had no real payback from it. This week she has been woken early every morning by the builders and has been ok with that. She has attended the education unit only once this week and had home tutor once, but has been fine with that. Because we reduced the schooling she has been able to meet up with friends once on Monday and then was supposed to meet up again on Thursday for a firework display, but she was waiting at the bus stop and saw her boyfriend knocked off his moped in front of her. SHe was obviously really upset as he was carted off in an ambulance and I feared that all the stress may cause her problems, but as soon as she found out he was going to be ok, she was fine. She has not been all grumpy and snappy, which happens when she is too tired. In fact things have been very good this week all in all. She has started reading again, which I am pleased about. SHe suffers from dyslexia and before she was ill just would not read anything. Then she began to read just before the visit from Dr Crawley, who said that she shouldn't because it used too much red energy because of her dyslexia. Now she has started again.

We were out today at a coffee shop when someone asked her how she was and she immediately said "I am WELL now" I know she has never really accepted that she was ill, even at her worst she would block it out, but she truly believes now that she is fine.

I now know I was right to put my foot down with Mrs CBT. If we had still been struggling on I don't think she would be as well as she is now.

Thanks for reading. If I am on here being a blubbing wreck tomorrow because everything has gone wrong I will KNOW this is a jinx!

Hope you are all enjoying your weekends.

Positive - that is great I am sitting here smiling for you. Of course it may all change, but grab hold of the good when it's there.
We're ok today. Mum home from hospital, I got out with dd1 for a few hours, dd2 coped with brief visit from noisy cousins, and overcame her anxieties and held a sparkler.
Got to get her to bed now, and we'll see what tomorrow brings.

So glad to hear your good news, Positive. Let's hope she has really turned the corner this time but as Katsch says grab the good while you can...

You sound so much better too Katsch.

Things do get better and what we have to keep remembering is that 'natural' as opposed to 'manmade' things can never stay the same they are always changing...

Enjoy the rest of the weekend...

Positive - my DD was exactly the same, as far as she was concerned when she felt well she was not going to be ill again. Maybe that strength helped her to get better, it certainly has to be a plus. I agree with Optimistic about natural things always changing, nothing stays the same. Enjoy this....

Katsh - glad DD could enjoy some fireworks and hope she continues to improve .

Why does a half written post disappear if you flick back to read a previous comment!
Glad to hear so much positive news. Esp from Katsh and PAO. Well done and keep smiling.
DD has sore throat and cough and gcse exam tomorrow. Thanks esp for your advice OM - read out to dd and shock horror she wrote email to her trainer
Of course I had said all that stuff to her but I am only her mum and therefore not to be listened to!
Yes - things never stay the same - my 13 yr old son has morphed into a part time Kevin!
You sound a bit more positive Katsh. Is there any news on the DLA? Can you appeal on the respite? May be worth asking yr consultant if you have not already. Round here, we have parent support workers who are ace. There is a website called parent direct - I will check and post link - but will not risk losing this post again

www.parentdirect.org.uk/default.aspx
This is it - is for working parents - may be of help.Not sure if you work or not.Worth a try whatever.
Has your area got community and learning partnerships?
There may be stuff available if you can find the right person to ask!

just wrote big post and it vanished, no time to do again. Dwardle thanks, and hope exam went well today.

Hope tha exam went well for DD, Dwardle! I know what you meanabout only being the mum! I will try to write pertinent posts more often in the hope that I can help!!!

How is DD Dwardle, hope everything is ok.

I saw the CAMHS psychiatrist today. Hurray! What a lovely lady - I asked her if I could have daily meetings with her . A very useful set up, and I think more help than counselling as she knows and understands my context, and is actually able to bring her expertise to bear on the particular issues in our situation. I am going to see her again, but she is also going to talk to other professionals on her team about some of the things I raised. The school thing came up, and she acknowledged that although official policy is " get them back to school" she felt that with regard to a 7 yr old there is a different big picture to look at. I feel that we can now explore that, and if we do decide to pull dd from school we will be doing it, hopefully, with at least the understanding of the team we are trying to work with.
DD managed her 1 hr 20 at school today, and left me without tears. Her day was ok, although by 5pm she just wants to be in bed, but fortunately ds (2) is happy to watch It takes Two with dd1, whilst I do bedtime for dd2. She did say tonight that she is "bored of school". When I asked why, she said that she is bored with being confused, and hearing the teacher talk and not understanding the words, and having a sore head and eyes that go funny. When asked what she really wants, it's to go to a soft play centre to go on the slides, if only for a minute, so that she can feel normal. Very tempting to ditch school for that . We shall see....

Hi all
She is okay but not brilliant. Still has sore throat and cough but NOT tired!
She was a lot stressed re exam and messed up the first paper rather badly but gained her composure for the second paper.
Still - she is calm and she did it!
Next exam on Thurs - hope she copes better with that one.
Thanks for support everyone - much appreciated
POA - dare I ask how dd is after your lovely positive post? How are builders and bank account?
OM - yes please - keep them coming LP lady sent brilliant email back - most helpful and dd said it was v useful!

Katsh - So pleased that you got on so well with the CAMHs lady. I hope she can realy help you and I am sure you will feel far better with her support. Seriously think about school. We have reduced DDs school now as that was ALL her life consisted of. Life is not all about school and if going to the playpark for some "normal" life is having to be put off because DD is too tired due to schooling, please consider what is important. - Oh I don't mean to tell you what to do, I just have found it such a relief when we have made these decisions in the past.

DWARDLE - Thinking of DD with the exams. Must be a stressful time for her, but it sounds as if she is doing great.

I am not wanting to answer the questions about how DD3 is now. Nearly came on for a rant on Sunday. Yes it is most definitely a jinx to actually write that things are going well. Living on egg shells with an emotional timebomb again! I hate this!!!

Katsh - your dd's description of school is just how my dd described it this time last year - she could not even read novels and she devours books.Delighted about CAMHS - pleased you are getting support - you deserve it.
POA - will not ask! Big hugs and know how you feel. DD not at school today. Argh!

Katsch - what you are describing is very common with CFS/ME. It is brain fog. My DD resorted to hitting her own head in frustration of 'not being able to make my brain work'. As a teacher of Y3/4, I think you should feel very confident about making your own decision about school for your DD. If it were me and I had, had a younger child I would have seriously considered home-schooling ( and it doesn't have to be forever!).

Positive - keep positive won't you? You are having a horrible time at the moment. I don't think it's a jinx to write that things were going well. Can you try and objectively think why things went so well and have now gone down again? It sounds like your DD is 'stuck' when she is in her usual environment and when you took her away from all the reminders of her illness she improved. It's just a thought and you can tell me to bog off if you like!!

Dwardle - it sounds like your DD is doing the best she can at the moment. The cough and sore throat thing is such a nasty virus going around atm. We have all been struck down badly here so I'm hoping that reassures you!

21again - how are you? how is DD doing?

Dwardle - sorry DD is still suffering with that sore throat. We have been fortunate and both DDs have managed to avoid all the awful bugs so far but there is a lot of it about right now.

Katsh - I too remember DD with the brain fog and confusion. She just couldn't concentrate or remember anything. It is so horrid for them .

Positive - I used to be the same as you, I didn't dare to think positively. As soon as I felt things were improving and allowed my hopes to get up, they were dashed again when DD relapsed. Remember she has improved and will do so again. Optimistic has a point about the reminders at home, when DD was improving I bought her new bed clothes and turned the room around to try to change the appearance of her "ill" bedroom which obviously had become something of a retreat. I hope things are not too bad.

Optimistic - DD is doing well and scored two goals yesterday in a hockey match. This kind of thing naturally is a positive boost. She has a science test on Thursday and a GCSE maths module on Friday, these will be another hurdle for her to deal with, but I am much more confident that she can cope now. How is your DD?

Positive - sorry things aren't so good again this week. I hope that today has been a better day. The yo yoing of this illness ( for want of a better term) is pretty soul destroying isn't it. I think that 21 and opt. have as ever given great wise advice, so I hope that you find some positive way through this little backwards step.
21again - great to hear how well your dd is. Keep telling us about her goal scoring!
Dwardle - I hope your dd is feeling a bit better today.
Thanks all for the understanding. DD didn't go to school today - she always has Wednesday off, and despite a sleepless night for her we managed a little trip out to our local museum this morning to see a few fossils, which she loved. I am going to try to make her life more fun, and if that means she's too tired for school then we'll just have to deal with that. I'm half joking, but half not. Her teacher caught me this afternoon when I went in to pick up dd1 from a sports match ( left the house courtesy of our lovely home start volunteer) . Apparently we need to have a meeting with the Education Welfare Officer, who knows why she doesn't attend school but needs a formal meeting to confirm it. What's that all about? Can any of you advise me as to how much school she needs to miss before the L.E.A will sort out some home tuition for her? For most of the term she's done 3 x 1 hr 10, and for 1 week she's managed 4 x 1hr 20 mins.
Can I also ask you wise ladies, how do you stop family life from being utterly dominated/ directed by CFS? Or is that an impossible dream?
Hope you all have had a reasonable day.

Hmm
Having a meeting - That may be your LA's policy but am not sure.We never had one. Am surprised teacher caught you. Have you asked Head what is going on? You should have nothing to fear from the EWO but you may like to explain that the meeting needs to be at your convenience - at your home if you prefer - and I would ensure you are not on your own. It would be perfectly reasonable to request home tuition via the EWO. They are used to doing home visits. You could also ring them yourself and ask what policy applies and why they need meeting. You have presumably got written diagnosis from Paed. I think I mentioned before - my dd's paed went to her school aand met them That was SO helpful. Schools take drs quite seriously. Do you have regular access to your paed? Could you ask them about school? CAMHS are also used to liaising with schools . We use something called a multi-agency meeting quite often which can be v helpful - get everyone round table. CAMHS can initiate that and you would be there and you could also say who else would be useful.
Sorry to ask again, but do your school have parent support worker access? Am delighted to see you have home start. They may know what else is available? Has anyone mentioned a CAF?
Have you tried putting home tuition into your LA's website so you know who is in charge? I bet your school does not know but the EWO may well. Would love to know what LA you are then I could look for you.There will be someone who can help.
I really think you are doing the right thing putting your dd first.And that is with my professional hat on as well as being a Mum. Home ed would also be better for their attendance stats!!!!

Sorry to ask so many questions but is worrying how much schools don't put themselves in shoes of parents when they say things.

As for your other question - that is hard to answer with one so small. It was a bit less difficult with 2 dcs and also being older. I think the others may have better advice on that aspect.

Just a quickie for Katsh, a bit manic here and I will try and post properly later. Just wanted to say Dwardle is the expert on education, so, as always fantastic advice. When DD gave up trying to get ot school and had a home tutor there was such a huge relief. FOr her the biggest thing was that if she didn't have the energy to get dressed she could just sit in the dinning room in her PJs. This was after many attempts at getting her to school, but by the time she had got dressed she was too knackered to do anything other than sleep!

I think I am right in saying that you are entitled to 5 hours of education a week. If this is not possible in the school setting, which it appears it isn't, then the LA have to provide alternative - ie: home tutor.

Our home tutor is lovely and really understood when DD just could not think straight to concentrate. For many weeks she was only able to read to DD and sit with her for a while.

We never saw our EWO, despite me asking to meet her when the school were being crap, pushy, rude, didn't believe us, not very helpful.

As for family life not being dominated by this, well, sorry no answers there! I do make an effort to spend some time individually with my other dcs, just take them for a coffee, or shopping.(older kids than yours!) But this is only a small thing and not really enough. I feel as if I am juggling and spinning plates at the same time! I'll earn my millions in a circus when this is all over!!!

Katsch - you asked how you juggle family life while dealing with this illness. The first thing, looking back, that you need to do is make sure you get some respite yourself. Don't feel guilty about taking time out it will make you operate better. Carry on with your hobbies even if it makes you feel selfish, it isn't. Secondly - have you explained to your other two what is going on? There is a tendency not to explain it all properly to siblings so they don't understand why you can't do things for them. I made sure I had some one on one time with my boys and my DH spent time with DD. The other thing to hold on to is that this is not life long and that your other 2 will be learning valuable skills during this. I think, once you have put 'school' in to a more appropriate 'place' for you, you will find it easier.

On a different note - I'm very interested that you have Homestart because as a result of my DDs illness I'm thinking of doing other things with my life and one of them is to train as a volunteer with Homestart. I'd be interested in the kind of relationship you have with the volunteer....

thanks all. Just a quick post before I put tea on the table. I had a scheduled meeting with dd's nurse specialist today - she came to see us at home. AT her suggestion we are dropping school to twice a week - Tuesday and Thursday, and then attending the EWO meeting with 3 weeks of that under our belts, to say either it works or it's still too much. She's also going to get psych. to write a letter in support. I feel much better about it now. I've emailed dd's teacher and I'm slightly dreading the response. Just a tiny rant - the SENCo at school had emailed the nurse about the EWO meeting to suggest we meet at her convenience ( not mine , with 2 kids at home ???) , and had said that dd had settled back after half term doing 4 sessions although"there was some resistance at first" I saw red, and couldn't imagine what they were referring to - my whole life is geared around getting dd to school. Then I realised that I had sent dd into school on first day back after half term with a note saying that she'd been really unwell all the previous week, and that she was still very fatigued, but we would do our best to manage school that week. And they read that as "resistance"??? Rant over. I watched a programme last night by Rosa Monkton about parenting children with disabilities, and it has certainly made me see the little battles we have with the "authorities" as nothing in comparison to what some families have to fight for.
Dwardle - I've never heard of a parent support worker or CAF. I will follow up your other suggestions.
POa - I'll join you in the circus
Optimistic - homestart has been helpful, but I'm sure depends very much on the volunteer/ client relationship. Will tell you more another time. What did you particularly want to know? I'm planning to be a disability rights campaigner in my new life after CFS

Hi all, not on here to talk about DD cos it would end in a rant!

BUT you asked about the bank situation. We thought it had all been sorted have to say that the bank with the black horse have been very efficient and nothing short of brilliant in helping us with this. Today we received some post from another bank saying that DHs account and credit card application had been passed. We had not applied! So now wondering what else someone is trying to do in DHs name! BAck to the fraud investigators.

Anyone had anything like this happen to you? It now looks as if not only the card details have been used but now DHs identity too, for someone to be able to open an account. This is all alien to us and we don't know what to look out for. Obviously keeping a close eye on our bank accounts and reading all mail carefully now - ie stuff that we may have just put in the bin presuming it was just adverts for credit cards or similar. I think DH should do a credit rating to make sure nothing comes up against him. Is there anything else we should do?
Sorry, I know this thread is not really for this, but i am sort of going into tortoise mode and feeling really stressed out at the moment (not about the money, its just an irritation we want to sort out!)so I'm not feeling up to starting a thread and getting people's advice.

Hope you don't mind,
Thanks

x-posts with you Katsh.,

Sounds like a good plan for DD. Well done.

Don't feel bad about ranting about the school! (You should hear me when I get going!!!) People just have not got a clue! Just believe in yourself and mentally call others all the names you would't say out loud!! - well it sort of works for me sometimes, anyway!

www.identitytheft.org.uk/what-if.asp just had a quick google. This is the home office site. It suggests doing a credit check with one of the 3 credit agencies.
Sorry you've got this worry on top of everything else.

Katsch - sorry school have been a little insensitive with you and yours! We were about to go down the home tuition route with DD before we did LP. Basically your DD stays on the school roll and she is assessed for her need for home tuition. I think it comes out of the school's budget. This was certainly the case at secondary level. I think it would be a great middle step for you and your DD and would allow her back in to school as and when she was ready.

Regarding homestart. I was just interested in the sort of thing the volunteer does to help you and whether you thought you managed to develop an easy relationship with the volunteer. I would love to be able to help mothers and children who need some support for whatever reason. I also saw the Rosa Monckton programme and I just thought 'Thank God CFS/ME isn't for ever!'. I just wanted to give the Mum with the CP boy and the ten year old boy some help!!!