Support thread for mums caring for child/teenager with CFS/ME. Part 2.

[PositiveAttitude]

Nice sparkley new thread for us!

This is the sanity thread for those with DCs suffering from CFS/ME.

"Old" members include:

PositiveAttitude - Me!
Dwardle Optimisticmumma twentyoneagain Chocaholic73 Katsh
and Dinamum

I was going to do a round up to introduce ourselves to any new people that wanted to join, but the old thread won't let me scroll back beyond January, so not much good and if I do it off the top of my head I will get it all wrong...
SO just jump in and keep the support and sanity flowing!

Come and rant and rave, get support and advice from those who have been there before you, but most of all come and share positive steps forward, no matter how small and insignificant to people who don't understand. Lets celebrate those small steps together.

I declare thread part 2 now open.......

Dwardle - great news

Well its been pretty quiet now for a few days, settled abck into a routine so dd is quite stable - although she was exhausted at the weekend after she came back from her dads. We're trying to do her activity diary at the moment, I'm not very good at reminding her though!

Had a letter from the paed today saying her last eeg had "anomalies" so she has to go in on weds next week for an Echo scan. Also she wants a more comprehensive set of bloods so poor dd is not looking forward to that trip!

We still haven't heard from the tutor about when she is due to start coming - how long does it normally take? I'm not too bothered because I think dd is benefitting from the total rest at the moment. Just dont want to get into trouble.

Hope all the dcs are well, love cuppycake xxx

Cuppycake - you won't get into trouble! Keep all your paperwork together and if anyone ever asks, just give them the file! Do try to keep a small note of anything that was not done in writing - date, who you spoke to, etc. Let dd enjoy the rest and remmber that Chronic Fatigue affects the brain's ability to concentrate and to work - if you are fatigued, the learning will not happen. That is why pacing is so interesting when you look at all the clours!
Guineapiglet - the school sound like they don't get Chronic Fatigue! Is there a senior person you could see to discuss? Have you got anywhere with a paed diagnosis. My dd's paed went to the school and told them what she needed!
Hi to everyone else - good to hear all your news.

Hello, can I join in?

My dd is 14 and was diagnosed with CFC in February. She'd had repeated bouts of tonilitis ( although the paedatrician thought with hindsight that it was more probably glandular fever)from November through to February. School were great and agreed to a reduced timetable, cutting out all the subjects she wasn't intending to pursue to GCSE. Since we live really close to school she was able to come home sometimes in the middle of theday. And she just about coped. She was insistent about doing the school exams at the end of year 9 and after a half term holiday when I more or less spent every minute with her, preparing revision notes for her, making snacks, learning with her etc she did very well ...and then CRASHED and didn't really go back to cshool for the final three weeks of term. She improved over the summer holiday and managed trips abroad and to Cornwall. She started year 10 a little more positively but it soon became apparent that it was all too much.

School cut out PE and the "extra curricular" lessons (PHSE and Life skills) but with 10 subjects there's not much slack. We saw the wonderful dr Crawley down in Bath last week. She was fantastic with Millie and saw straight away that she had really been pushing herself very hard to stay on top of her work and there was a danger of a crash again. Dd was so pleased to be taken seriously ( it is difficult for people ( and I include me here) to appreciate what it is like I think) and encourgaed by Dr Crawley's assurances that she would get better.

However to get better and to avoid the push yourself for a day or two then suffer for a day or two, and to avoid a crashing out at weekends, dr crawley wants her to stop every day at around 6 hours of "red" activity. This will mean a shortened day at school and leaving all homework to the weekend (Dr C said much better to do homework at the weekend rather than on a weekday to keep a certain level of activity at the weekends) and apparently I've got ot be vigilant in making her stop even on a good day at the 6 hours (no socialising with friends/computer /challenging TV included).

Isn't it all going to be very difficult. Have any of you gone through this and found the increase in activity does go up quite quickly. is this pacing really better than good days and bad days - I so love seeing her having fun sometimes ( albeit rarely) with her friends that I am loathe to stop the event even if it means a crash the next day. Dr Crawley was adamant that the up and down, do too much/crash back down cycle had to be broken.

I've got a meeting at school tomorrow to try to make up the new timetable without giving up any subjects. Seems to me that geography and history are easier to catch up with than maths and the sciences and languages? And I'm going to ask for weekend homework only. Any other tips?

And the real difficult one to call is what to do about the 6 day trip with the school choir to sing in venice. One performance a day, some sightseeing but free time as well...but she wouldn't be in charge of her day like on holiday, and it would be tiring...but she wants to go and had promised her best friend that she will be there...andf school have said they will make special arrangements for her....but I guess Dr Crawley would think me mad for even considering letting her go?

Any observations/knocking sense into me gratefully received...some of you have clearly had to deal/are clearly dealing with more extreme cases than Dds...it must be so hard .... then again Dr C said most children giving questionnaire results like Dd would be off school far far more...

Hi fififi and welcome. Sorry to hear about your daughter. This is a brief(ish) post as I need to go to bed, but having had dd sick for 15 mths before we saw Dr Crawley in July I can honestly say that it is only since we followed her advice to the letter that things have improved. For the first time in 18mth I believe dd will get better. We have got rid of "bad" days and have a predictability to life. My dd could only manage 4 hrs red in July but is up to 6 now, but I'm sure speed of increase is variable, although I expect Dr C said 10% fortnightly or thereabouts. We cancelled our summer holidays on the back of Dr C's advice so I guess I'd say if you know the choir trip is really a bad idea, then it's tough, but you probably need to cancel it. We all know how hard it is to stop your child having fun when they seem to be managing, but the boom and bust of this illness is the consequence. Yes - pacing is really really difficult. I have 2 other dcs and it has drastically altered family life, but we are finally seeing our dd start to get better, so I feel it's been worth it. Anyway that's just my view. I'm sure you'll do all the right things for your dd. Hope the school meeting goes well.

Thank you katsh.

I've just spent about an hour reading back through this thread - I've dipped in and out since diagnosis and , indeed , it was through here that I first heard about Dr Crawley.

School tried to be very supportive, although it took a while to explain that it was not enough to waive homework so she could attend all lessons - there are only five lessons a day of an hour each so that's five hours said the Deputy Head, isn't that achievable?....I had to point out that it was a day at school isn't just 5 hours of lessons but a ten minute walk ( OK 2 minute drive) for an 8:25 start right through to 4:00 and getting home. Nigh on 8 hours. And you have to allow teenage girls time for facebook , and arguing with siblings and worrying time...so we're easily on 10 hours plus. Too much.

What we did agree was a reduced time in school going down to about 4 to 5 hours a day and NO homework to be done apart from at the weekend. Dr C a big fan of homeowrk at the weekend if only to keep every day the same in terms of activity.

So that seems hopeful. Before we were using the free periods/late starts of the reduced timetable to do catch up work/homework so it wasn't a reduced timetable at all.

Can I ask - did your Dds ( it's all daughters isn't it?) get worse and worse? Obviously some of you have had truly awful times...how did you get to the bad place? My dd hasn't been good since February but apart from post exams in summer there hasn't been any marked downturn. I guess we were lucky to avoid that crash becoming worse/permanent because she simply missed school til the end of term and then had a lengthy summer holiday.

Over the summer she seemed almost her old self - but now looking back I can see that as it was the holiday there were lazy mornings of PJs and TV and there was no dictated timetable and some days she didn't feel great but there was nothing she HAD to do or catch up with, so it was a false positive maybe.

Anyway, we will try the new timetable and I am going to bite my tongue/sit on my hands and not try to get her to do some work when she appears perkier. Fortunately big sister who wasn't overly sympathetic is now back at uni and older brother( ditto) is off on his gap year travels soon so she won't have them making her feel guilty. But I too haven't bought in to the forget exams/11 GCSEs train of thought yet so i do need to heed the very good advice from others on here.

I hope everyone else is coping. And thank you again katsch for replying - it must be so hard with a dd so young...

Dwardle that is fantastic news, this thread is for ups as well as down and we all need to see the positive.
Cuppycake hope DD gets on OK at the paeds next week. Don't worry about the tutor. Once they have you on record, it is not a problem. You won't get in trouble. In some areas, they are short of tutors.
Guineapiglet hope DD is doing OK
Katsh how is DD?
Fififi Hi and welcome. It sounds as if you have been lurking for a while, so you know us already! I'm glad your DD saw Dr Crawley - she is really good. I really wouldn't think a school trip is a good idea tbh, they spend hours awake nattering and that is all so much energy. It sounds as if your DD will still be doing a pretty full timetable ..dropping lifeskills type stuff and PE isn't much at all. What it is really hard for us parents to get their heads around is that vast numbers of GCSEs are really not that important. Education can be made up later if necessary. Unfortunately schools seem obsessed with students sitting huge amount of exams. (sorry ..bit of a bee in my bonnet about that one).
Re your question about how kids get severely bad with ME, I can only tell you about my DD who was in Year 10 when she first got ill. She had a virus from which she didn't pick up but at that stage she was totally mobile, just hugely fatigued, headache, legs aching etc. She tried going back to school but couldn't cope. Then it was the summer holidays and (unlike your DD - so this is positive) she didn't pick up. We went on holiday and by that stage her legs were getting very wobbly. We couldn't go very far and it was very difficult ..no wheelchair, no blue badge or anything. Come September, she still wasn't well and the legs were getting worse, she could walk less and less and they finally gave up by the November. It was having Dr Crawley come to see her at home the following June and then following pacing at very little red, that got her back on her feet and moving round the house again. Hope I haven't depressed you - I think it's good that your DD seems to have bottomed out, but I think you really need to pace quite strictly as Dr Crawley has advised, and soon she will be able to do more. Sorry this has ended up so long and keep posting!

Hi Fififi. Welcome and so sorry to hear about your dd. A very familiar story to us all.
Re your questions about gcses - here are my thoughts
Does your dd NEED 11 GCSEs?
Needs eng, maths, a science,......
Think about -
Section on UCAS about medical stuff,
What are entry requirements into 6th form ? - for my dd was 5 gcses and they said they would waive that if she didn't make it (she did)
I know some very top unis look at gcses but the actual entry requirements are related to AS/A2 scores.
I can tell you about my dd - until she cut from 10 +as to 6, she did not start to get better. She has managed to stay with her peer group, recover and get into 6th form where she is doing 4 as levels (proper subjects!!!) Worse, when she was still on full timetable, she got so stressed that she had major panic attacks (ending up in A&E once) So - in the end, paed said look at her as a person. We did and decided that her health was most important. We are both teachers - DH is secondary & I am Primary Head. Do I regret choice .... NO!
She went to gig last night and was up before 7 this am to advise me on wardrobe choices
The trip - how will she feel if she feels fatigued in Venice? Will her friends/staff understand - can they leave her in hotel? Is there potential for her to feel like she is a pain? I would be so wary.Asked my dd what she thought - she said don't go! The worry of the impact of feeling fatigued could really knock her back. Sorry to be so blunt - this is obviously my opinion - but there will be other trips and other opportunities.
Also, pacing has to become the choice of our dcs at some point - they need to learn to take control. But they need scaffolding into it!
It's late - will chat tomorrow.
Hello to everyone else.

Is X factor a red activity?!!

Back on to say thank you for all the advice chocaholic and dwardle.

Wasn't being flippant with the X factor question - it's seriously quite hard to decide what category a TV prog falls into (except for Friends for the umpteenth time which is clearly yellow) and if she's not allowed to nap it's difficult to come up with activties for dd which aren't red.

When did your dd become ill dwardle? very encouraging to read she's back to normal in ( presumably) year 12? And chocaholic you say your dd became ill in year 10 - where is she now?

I do hear you both about GCSEs. But dd is adamant that she is not giving up any subject ( apart from possibly statistics which they haven't even started yet). I think the problem is that she has two older siblings and thinks it is imperative to get the same number of exams as they did. Her school seems to have chosen to do modular based courses so she will get parts of the exams in lots of subjects out of the way during the two year course which is good in a way. But does mean that she's got the pressure of "actual" exams/assessments right now and every month or so.
Thanks for all your comments...now back to the X factor....we've decided it's so predictable it's a yellow!

erm ...I think Dr Crawley would probably say red (please don't throw rotten tomatoes at me!!!). However, as you say ..it is very predictable so balance that against any excitement, annoyance etc etc. Everything is a balance when it comes down to it and you have to weigh everything up ..unfortunately. Don't envy you with a DD being competitive with older siblings, hope she can cope. It is one of the things about ME sufferers ..they almost always have very very high expectations of themselves.

In answer to your question Fififi DD is now almost 19 ..she is doing her A2 Maths this year with Nisai who are an interactive online organisation ...so she goes to "live" college with other students from her bedroom! She has made huge improvements on top of her basic pacing improvements, through using the Perrin Technique which is a treatment carried out by some specially trained osteopaths. The theory is the system needs to be cleared of toxins ..we have to do home massage every single day and it is costing an arm and a leg but it is worth it, because it has made her a whole load better. She still has a way to go though!

Hi
Fififi - dd became fully ill in Oct 2008 - in Y10, but had also been ill in Autumn 2007 on & off. So she staggered thru her gcse years never fully being in school. She is eldest but at high achieving comp, top sets for everything etc etc - so I do understand.
She is still even now trying to do more than I think she should. Is all so hard really.

Hi all, been quiet for a bit, dd has settled down now I know what to look for in terms of activity colour :D I know to schedule anything for her on a weds or thursday so that she has a quiet time on monday and tuesday after coming back from her dads - he still pushes her too much.

She has discovered a passion for origami - has spent so much time making envelopes and boxes that she insists it is now a green activity because she could do it in her sleep :D

Nasty day tomorrow- full blood screen and an echo cardiogram - there is still an anomaly showing on her eeg, which I find scary but the paediatrician seems ot be playing down.

Nice to meet you Fifi - even a six hour red day sounds a lot, I found my dds condition to be cummulative so if she did a couple of 6 hour days she literally couldnt move for a week.I've given up on education for a bit to be honest - think dd needs to focus any energy she has on getting better. She's now sleeping better thanks to the melatonin sugestion (cant remeber who but someone on here:) )and although there is no noticable improvement in her general health she does seem to be getting some of her "sparkle" back.

Catch you all again soon xxxx

Hello all. Cuppycake how did things go? Everyone else - How are you all? Positive - been thinking about you and your neck. How are you?
Unfortunately our household have been hit by winter gastro and flu viruses and we've all been laid low. dd2 was doing so well, so it's a bit of a knock back. She had the gastric illness last week and seemed to pick up, but now has a raging fever , so I'm hoping she is soon over it. Can any of you advise me on pacing after an illness like this? last winter she seemed to avoid everything so we've not had to manage this situation before. She was doing 6 hrs red before this blip. How far down should we drop it?
Also if any of you have words of wisdom re. making sure attention is spread evenly between siblings when one has chronic illness - please share them . Feeling like my dd1 gets the raw end of everything. I expect her to just get on with life, and cope with the limitations there are on her life because of her sick sibling. It's probably just an unneccessary ( rather tired) attack of the mother guilts, but I'd welcome your thoughts.
Hope to hear all your news soon.

Hi everyone - to the new ones I'm one of the originals whose DD did LP 2 years ago and is now fully recovered!!To everyone else and sheepish wave!!
I just wanted to come on and say all your children will get better in time.
My DD had CFS/ME from Year 8 to Year 10, was down to 2 hours a week and about to be home tutored. She did LP and was pretty much recovered there and then. She did 2 GCSEs last summer while in Year 10 and got an A and A*.
She is still vulnerable to illness but has never crashed back into CFS/ME. This autumn for example she has had a bad virus with glands up etc etc - you can imagine what we thought! But it was OK. Since LP she has never had the grinding fatigue.
For those of you with academic DDS, my DD is at a grammar school but will be changing for sixth form because I have learned the value of our children being happy and relaxed. I am simply not prepared for her to be pushed so hard again.

I really hope that hearing a positive story will help you all and if I can do anything to help please let me know!

Bigs hugs to all. xxxx

Hello All - Optimistic great to hear that your DD is still doing well and a very wise move, I think, her changing for sixth form.
Cuppycake how did you get on with DDs appointment?
Positive Katsh Guineapiglet how are things? Anyone else still out there in the ether, hope everything is going well.
My DD is doing OK on the whole. She has been getting very bad headaches for a long time. The GP is convinced it is tension based and tried accupuncture a while back which totally wiped her out for a week so we gave up on that. He has now prescribed noritryptaline (sp?) which is an AD in a larger dose, but in a small does is often successful for pain. Early days as yet, she was pretty wiped out by it yesterday but is far more normal today. Fortunately, she is old enough to be philosophical about it and, having heard how it can be very effective, really wants to give it a go.

Dear All, thanks for all the postings and sorry for long absence, nice to meet you fifi, I think your daughter sounds in a similar position to mine. Hope you are all doing OK, I am quite uplifted by last two more positive postings, and very sympathetic to the question raised about Mum Guilt - No 2 son has been pushed out a little whilst daughter has been poorly. Since last posting have had CAMHS meeting re panic attacks which was really helpful and hopefully some strategies can be put in place. Daughter has, like some of you, had gastric type fluey thing, and been knocked back a bit, three days off school, but seems to be doing OK just very very tired, Year 10 is very demanding. Like some of you have said, we want her to have FUN, so she went on a sleepover last weekend and was up until 11 pm, and as a consequence went down hill very quickly. Just cant do it in school time as a change in routine ( she is usually in bed by 8.30!) seems to knock her right back.
We have Paed appt after half term, so hopefully a fuller picture to work with the school on. THis half term we are school and house hunting near Southampton - and we have just had builders (!!!!!!!!!!!) for a over week, so am looking forward to a change of scene! Hope you all have restful half terms and all the children can rest and be pampered a bit........ Lol XXXX

Guineapiglet hope DD is better and the paed appointment goes well.
Has everyone had a good half term?
DD managed her 10 minute drama production last night, I had to drop her off immediately before her group went on and pick her up straight after ...hovered in Sainsburys until she texted me!! Same again tonight. She was on a real high ..she has come so far ...but as she collapsed straight into bed when she got home, saying how tired she was and that her legs hurt, part of me worried about how far she has to go. Most people could manage that 10 minutes on top of a day at school or work or going round the shops, not for it to be the only activity of the day....need to snap out of this I think!
There is an update on Positive on Gen Health ..sorry ..useless at doing links ...sending her lots of good vibes if she's lurking at all.

Hi everyone,

Sorry to have gone awol recently. If you want to be nosey here's the reason.
this has sort of taken over my thoughts and energy.

DD is doing ok and hoping to re-increase her hours at college to try and stay on track and not lag behind.

Massive waves to you all and hope you and DCs are doing well.

Hello everyone...sorry not to have posted...what little time I've had I've spent reading some of the other mumsnet threads ....so wish I'd discovered this site when the DCs were little

What has really taken me aback are seeing positive attitudes other threads.
Teenage daughter with CFC? check- me too! Mother with mental health problems? Check- me too! I am an only child with a mother who while not yet formally diagnosed with dementia is clearly heading that way following a fall in january when she severely fractured her hip . This fall, as well as making her reliant on a frame, seems to have acted as a catalyst to her failing mental health and well being. She is depressed, paranoid, convinced staff are out to get her or her property at the residential home she now lives in, forgetful and often nothing short of downright rude and unpleasant to me
Personal health problems? Check! - me too. I've been treated for cancer for the past five years. Positive atttitude - I sincerely hope that your gland growth is confirmed as benign as the doctors hope. Whatever the outcome, however, know that you will cope somehow. That's what we have to do.

Sorry - off tangent a bit.
Well DD went to venice. I went too so was able to pull her out of a couple of the long days ( eg sightseeing in verona all afternoon after a morning concert in Padua cathedral) and just sit her down for a cup of tea in a spare hour or two on other days. She left a day early too, once the concerts were finished so she didn't have a late night celebration dinner and a full day on the lagoon islands on the last day before a night flight home via Rome. She survived! She was exceptionally tired after the long journey out, looked ready to faint in the first recital and I really thought I had made utterly the wrong decision. But after an afternoon with me the next day, a quiet morning back at the hotel the day after that and the excitement of being let loose in venice with her friends with the chance to sing in St marks basilica and the Frari church ( which I think even blase teenagers realised was something special) she coped well and loved the whole thing. Very tired once back home ( so thank god I did rescue her early) but she's had a week of more or less non stop yellow activity to recover.

One thing I'd like advice on - have your DDs had skin problems with CFC - DD has very dry skin on her face and round her eyes, and her childhood excema on her elbows has flared up and resulted in an outbreak of ringworm ( so the GP said earlier this week). Is this common or just another example of an immune system struggling to cope?

Anyway back to school tomorrow. We have a further reduced timetable finishing at lunchtime on Monday Wednesday and Thursday with a late start on Friday and a break of a couple of hours on Tuesday. Long mornings though ( lunch doesn't start til 1:30 ) with only one hour long lesson in the afternoon. We've achieved this by opting out of Life Skills ( 1 hour) PE (2hours), PHSE (1hr) and Independent thinking ( 1 hour) and one lesson each of Latin and History ( chosen only because they fall in the afternoons). And no homework in the week but all to be held over until the weekend.

What was clear before the timetable was agreed and when DD was in and out of school on an ad hoc basis on good/bad days is that some teachers are really supportive and put themselves out to email DD with the work missed/mark the homework out of time. Others seemed to forget very quickly that she was ill and issued blue slips for late homework and made comments in her half term report about incomplete homework when I feel she should be being applauded for having made up missed lessons on her own. I'm hopeful the new timetable will help. I'm going to stick to it until the end of term even if she does start to improve - it works out at about 5 hours red in school most days so it will just be flopping in the evenings.

What do the rest of you do about bedtime. Dr Crawley recommended an 8:00 a.m. get up time every day and bed at 10:30 to 11:00 because she didn't want DD having more than 9 hours sleep. Finding it very difficult to keep DD up that late....any thoughts?

Hi Fififi - sorry you've been through the mill a bit. Sounds like Venice was really good for your DD with you there to keep things under control. Glad it went well. My advice on the timetable thing would be definitely don't rush to increase it. Imo your DD is still doing a huge amount and you really don't want to push it. Re the sleeping, we never quite did what Dr Crawley wanted us to do. At the stage she visited us, DD was totally unable to settle down until 12.30 - 12.45 am. She wanted her awake at 8.30 in the morning at a time when she could only do 4 hours of red activity in a day and was unable to move out of bed on her own. What we did was keep to a regular routine and aimed to wake her up around 9. This is still what we do most of the time, although if she's had a busy day the day before, I will let her sleep in until 9.30-9.45. I would never let her sleep much later than that though. DD has always needed a lot of sleep though. My view is that it just needs to be under control and as your DD has to get up for school, it should be ...hope that helps.

Just checking in to say hello. Positive - thinking of you and praying for you. How's dd? Hello Choc - hope dd is still making progress. Fifi, Guineapig, cupcake - how are you all and your dd's?
Things aren't terrific here as dd has really gone down since having a tummy bug / fever / viral infection. I'm finding it quite hard to see her back to where she was four or five months ago, when we'd made such great progress.
I got very frustrated and a bit miserable yesterday when I picked up dd1 from school and saw lots of yr 3s and 4s ( dd2 is yr 4) finishing a long school day and clubs and dd2 was crashed in the back of the car having made a 30 min trip to the library and post office with me - and that had been her only activity of the day. Sometimes I really hate CFS.
Sorry for a miserable post, but i guess that's just how it is some days. I hope everyone has a good weekend.

Sorry you're feeling so down Katsh. Some days it's just like that isn't it? I remember a similar experience with DD, when I went to the GCSE options evening and saw all these bouncy, healthy girls and I could have happily throttled the lot!!!!!!
I'm sure your DD will pick up sooner than you think. The viral thing that has been going around has been brutal. DD struggled badly before Half-term as she just couldn't shake it off.
Have a brighter weekend....x

Like OM, Katsh, I know just how you feel. Sorry things are not so good at the moment. I do think it is so hard on the parents.
My dd has cold at moment and is also struggling.I am working VERY hard at being positive whilst trying not to imagine signs of a relapse.I hate this time of year - it has been the worst time for dd every year since she had cfs AND the year before too.
Positive - thinking about you and hoping these days before your op are bearable. Hope dd is getting into college too.
Fififi - great news about Italy - you were very fortunate to be able to go too. Just a thought about sleep - if your dd is struggling in the evening, what about an earlier start then you could have an earlier bedtime? My dd would stay up half the night if she could but not everyone is like that (me for instance but I can get up early)
Hi everyone else!

Thanks optimistic and dwardle - nice to see you both. I know that we'll get through it - like you I've been in this for a while now so I know how it goes, but sometimes you just need to let off a bit of steam ( or gloom ) . Hope your dd's are doing ok, and that the cold didn't progress to anything dwardle.
Hope everyone else is ok. Positive - thinking of you for this weekend.