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.......

Big day in Positiveattitude household today - DD3 is having an induction day at the local college. Preparation for today has already exhausted DD out!

She's had her hair cut at the hairdressers for the first time in over 2 years as she was well enough to sit there and have it done .
We went and chose a whole new wardrobe of new clothes that actually fit her and she looks gorgeous. (slightly biased!!)

This morning she woke at 6.30 and has had a shower, then a sit down for an hour (fell asleep) to recoup her energy.
TBH I think this is all a bit much, but DD3 is being as stubborn as always and I have learnt that I have to let her realise this for herself and be there to pick up the pieces, whenever that will be...... but I need to be positive and encourage her as much as possible until we reach that point!!

Waves to you all.

Dear All
Would you mind if I crash your thread? I have just posted under 'health' trying to get some ideas about my daughter ( I will try and write it all again..) but the jist is that we have a wonderful 14 year old who was hit hard by a non specific virus back in May - it knocked her sideways, and our vivacious lass has not really been her sparkly self ever since = she ended up missing a month off school and has given up all her extra curricula activities sadly because she is so very tired all the time. We have been back and forth to the docs, blood tests etc, but nothing specific diganosed. She is very tall and has very low BMI, grown about 3 -5 cm in one year, shes so self concsious about herself. Peers have not been too supportive and she was left to herself pretty much over the summer hols.Great.
Docs do not seem to want to make diagnosis, but she is now suffering from recurrent panic attacks and anxiety, brought about by virus apparently. Desperately want to support her as she is starting Y10 and needs all the energy she can get. She WILL NOT lie in, she is always up at 6.45 every day and not like a 'normal' teenager who sleep as an when needed, she is a lark, and is usually in bed by 9 every night wiped out. Am I in the right thread, does this seem familiar to anyone else. Find that my own friends are pretty disinterested, or at least they ask how she is and thats about it...Any ideas would be happily and gratefully received.

Hello all,
positive really glad to hear your daughter is looking well, I'm sure she looks beautiful in her new clothes.

Hello guineapiglet I'm sure you're very welcome over here although your daughters times for being sleppy and being awake vary she does sound very like mine otherwise. My original docs were really unhelpful but i finally found one who listened so dont give up! It seemed to me to be a case of ruling out everything it wasn't to find out what it was.

I guess maybe you should push for a paediatric referral if your GP isn't coming up with any useful answers.

Getting my DD ready to go into school for an hour tomorrow, I've just printed the Tymes Trust teachers guide out for her to take in - it seemed a fairly sensible document to explain what is going on with her. (guineapiglet have you checked out this site yet? Its very helpful)

We went for a quick trip this afternoon to pick up new pencil cases etc and the DDs had a huge row in the car :(

Oldest dd(15) kept insisting that dd is faking it and she doesnt need to be in the front all the time and then little dd(7) weighed in to protect her sister who just burst into tears - I hope it wont affect her being able to go in tomorrow because she is desperate to see her friends.

Hope you are all going on ok, take care, cuppycake xxx

Cuppycake and Positive hope school and college go well ...and also for everyone else.
Guineapiglet - welcome to the thread, you are not crashing it ..it is here to support those who need it. A lot of what you say is familiar but possibly there may be something in the low BMI and growth spurt as an alternative. I know how hard it is but you need to keep pushing for answers and a referral, probably to a paediatrician in the first instance. As Cuppycake has said, the Tymes Trust website is good plus also the AYME one but I am hoping, for yours and DDs sake, that there might be an alternative. Unfortunately, in my and my DDs experience girls of your DDs age are not particularly sympathetic and don't tend to stick around, although of course there are exceptions. Do let us know how things go for your DD.

Hi guineapiglet - crashers most welcome here. I'm sorry that your dd has been unwell. Total fatigue and a lack of diagnosis is certainly something you can come and talk about here! Has your dd started school again this term? How has it been so far? We are all at different stages with our children on this thread - my dd is 8 and was diagnosed with CFS 14 mths ago, following a post-viral downhill period when she lost a lot of weight and became totally lethargic, very unhappy, headaches, muscle aches, nausea etc, missed school, and after a lot of negative test results she was given the diagnosis. What tests have the drs done so far? I'm sorry your friends ( and those of your dd) haven't been very supportive. I think most of us have found that that is often the case - I think people think fatigue can just be "slept off" and then the kids can pull themselves together and get on with it. Keep posting here if it helps.
Cuppycake - I'm sorry that your dd is so exhausted - I hope that she makes it to school tomorrow. It takes a lot out of everyone doesn't it - not just the sick dd but her sisters too.
Positive - how did your dd's induction day go?
My little dd has struggled a bit with the return to routine - not hers, but her sister and brother, as she now has to sit in the car for the school run. She was fairly wiped out today, and as it was her best friend's birthday we had arranged for her to go for tea for 1 hour. She did go, and had a lovely time, so I am hoping the impact won't be too big from that as her home tutor starts again tomorrow.
I think I'm feeling a bit and tired with it all at the moment. Hope everyone has good days tomorrow.

Choc - cross posted. How is your dd?

Sighs - well she didnt make it in. It took me half an hour to get her to oen her eyes this morning - totally wiped out again. I might give up on school for a bit - I dont want her to get worried about it.

ME support group this afternoon, I think I'll go even if shes not up to it although she does perk up a bit in the afternoons sometimes.

Hugs to all

Cuppycake xx

Hi all,

Guineapiglet - You are most welcome here and I hope we can help you and point you in the right direction, or just be here for you to rant at!! (reading back through this thread may be a good idea as we have all come a long way!)
My DD was 14 when she was first ill, too. She is now 16. It may be worth speaking with the AYME people and getting armed with some research to go to your Dr and get a proper diagnosis, then you cna get referred and start some proper help.
I keep on saying it on here, but here I go again... Dont worry about education!! Health is so much more important. DD has basically had no proper academic education for 2 years (yrs 10 & 11) and is now going to college to do a small "catch-up" year, without any pressures. Giving up on school was the best thing we did!!

Cuppycake - My DD was just the same... more grumy when she was having a better day! We used to say that when she was really bad she was too unwell to be grumpy!! I even spent a number of weeks wishing she would be grumpy again as I would klnow she was improving .
Also the siblings arguing, my heart goes out to you. Exactly the same here. It is such a difficult illness to understand. DD's Sisters dont understand that she will put all her effort into havign a friend visit for an hour, then crash out afterwards and be unable to empty the Dishwasher, or something. I understand, but it is so hard getting them to understand!

Katsh - Being in car is red activity, IIRC, so it will tire DD out.

Dd enjoyed her day at college yesterday. Crashed out last evening and was in bed before 8! Dead grumpy this morning, and no college today, so she can relax today, ready for tomorrow. Normally she will be doing Monday morning, Tuesday longer day,and Thursday morning, so it is probably the best combination we could hope for her. (11 hours total) with days to recover in between. - Also boyfriend has Wednesday's off, too so DD is doubly happy about that!!!

I am at work at the moment, so I'd best go and get something done.

Hope you all have a good day, .

Katsh sending you hugs ...do you have anyone you can talk to in RL? I really feel for you as you obviously can't leave your DD at home while you collect the others as she is too young. Hope DD is OK today.
Cuppycake it is a very hard thing not focussing on school. As caring parents, we are told from the word go, how important education is but, actually, health is even more important. I think the thing to remember is if your DD isn't feeling great, she is not really going to be accessing what she is being taught at school anyway. Education can always be made up in the future anyway. Do you know about home tutors - I think from memory that once a child misses 14 days schooling consequetively, the Local Authority are legally bound to provide a home tutor for 5 hours a week(it is called hospital and home education where we are, but may be different where you are). In practice, it takes a while to organise but it would be far less taxing, the whole getting to school and just being there is hugely exhausting.
Hope everyone has a good day today.

Positive cross posted with you - glad DDs day went well yesterday.

x-posted with you Cuppy, sorry its not a good day. I would go to the support meeting. This thread was the only support I had, and I found it brilliant. I didnt want any doom and gloom groups, though where you never hear positive stories and positive outcomes from CFS. (hence my nicknmae on MN ) I found it far more helpful to read here about how others were coping and getting through this, not just how crap their lives were!!! I hope your support group is a positive one.

Dont worry about schooling I cannot say this strongly enough. I know its hard it took me months of struggling to get my head round it. I would wake DD up, sometimes could not even do that!! And she would come home from school absolutely knackered, or I would be called to go and get her (if they allowed me to, or if they believed her!! ) and whatever I did I felt guilty about, and worried about her future etc, etc. As soon as we gave up, the pressure was off, both of us and it was only then I realised how pressured we ahd both been about it.

Thanks choc - gosh, hive of activity here this morning, its been quiet on here for weeks, now we are x-posting each other!!

How is your DD?

Thank you to all for your really helpful words - feel a bit tearful as I write this, because it is such a relief to know that you all understand!!! The school thing is a huge issue isnt it, she has gone back to school, bless her, but looks so exhausted on her return, periods are heavy and so there are a lot of contributing factors at this tender age. I guess a routine does help, trying to rest when she comes in, doing a bit of homework, some time chilling in front of the tele, and from what you have all written, some days are good, some bad but what I was feeling bad about is how it affects me, and our other child who is 5 years younger and is not very understanding some times. In short, thank you for your welcome and your care, it is very reassuring to know that there are strategies, there is support and we can get through this X

Guineapiglet and Cuppycake - my DD has well and truly recovered from the cfs and you are just beginning this journey. One thing that we found to be invaluable was keeping a diary of symptoms and daily happenings. At the time I wasn't sure what benefit it would give but when DH and I sat down one night with his calendar, my calendar and the diary we became aware of events that were causing stress - things we hadn't noticed at the time. Stress is the one thing we needed to eliminate.

It also helped to look back and realise that she really was improving.

A friend's son has had good results after consulting Professor Findley (google him to find out more). You do not need to live in his area to see him as far as I am aware.

I understand your tears, I shed plenty of them myself, and this is a very difficult time for you all . Remember your DCs will get better and if you read through this thread and our original one you will find plenty of information. Keep posting..

CCQ How was the support group? Was it your first time?

Hi
Sorry have been out of it - just skimmed through all the posts.
Guineapiglet - my dd suffered terribly with panic attacks - so bad at one point we ended in A&E. Upshot - cut right back on school, got referred to CAMHS for CBT - ask me if you need acronyms explaining. When a child has a panic attack, brain shuts down and so being in school is a waste of time anyway. Sorry to sound so blunt but it's actually some kind of chemical thing in the brain - fight, flight mechanism.She WILL get through this but making her do things will only make it worse, says me speaking from bitter experience.
There is Hope - dd started 6th form yesterday, doing 4 as levels and is glowing and so happy- she has hardly been to school for past 2 years - it started Oct 2008, just like you described. Are you in line to see a paediatrician - makes life much better if you have a diagnosis. Put foot down and ask for paed referral.
Just rereadthis post and sound very bossy - sorry
Going to go now as need to sleep - new job ace but challenging. know anyone who speaks Hungarian?! Sorry have been away - will catch up more at weekend.
Send all big hugs - both old and new

Forgot to add that in my opinion, life gets easier for the dcs when you remove the stress and pressure of keeping up with education AND it is not the end of the world in any way. i found out about all sorts of people who did really well post cfs and my dd has moved on. Fewer gcses won't stop her going to uni. I am in education and this was a hard lesson for me but one that I HAD to learn to start to see any improvement in dd. They do go back to it when they are better, honestly - read this thread to see!

Hi there and thanks for your hopeful message. Would help to have some acroynm explanations - we have been referred to local child mental health team re panic attack ( I assume that is the CAMHS bit - what is CBT?). Daughter extremely tired again after school, looks very pale. SHe has chosen a tough pathway at school with separate sciences and 12 GCSEs altogether which I feel is just too much. We have looked at her 'future' career of choice, to do a degree in conservation/zoology/animal management etc ( prob at an agricultural college) and have talked about just concentrating on those subjects she wants to do well in, others, as you say, not so critical. Just want her to be happy!!!!! Doc gave us a really helpful leaflet prepared by Northumberland NHS simply entitled' Panic' which was absolutely brilliant at explaining everything you have above re fight/flight etc and how child can take control of this and develop strategies to cope, would recommend it to others in similar circumstances. Back to your message above, is a paed referral on the back of the CAHMS referral, or a separate pathway? Many thanks for all your advice.

*Guineapiglet" - I really would say it sounds as if your DD is doing way too much, she really, really doesn't need 12 GCSEs. I will answer your abbreviation queries as I am here - yes mental health services is CAMHS (child & adolescent mental health services) - very variable imo, my experiences with DD with ME, plus DD2 who has SEN and anxiety have not been good, but as always it depends on the individuals you get to see. Paediatrician referral is totally separate, don't wait to see CAMHS first but definitely get the ball rolling now. CBT is cognitive behavioural therapy, there is lots of info on the internet out there.
Dwardle glad everything is going well for DD and your new job - don't work too hard!
It's nice a busy round here atm

Hi all,

Had quite good phone call with the education welfare officer today, from being all over me last term for not sending dd to school she is now totally on board and doing all she can - apparently she'd noticed that dds abscences had a classic ME pattern! Amazing what hindsight and an official diagnosis can do.

DD seems to be developing a lot more problems with stomach pains and not wanting to eat at the moment, I don't know what to do that I can tempt her with - shes gone off all her favourite things at the moment. I guess she doesnt need to eat so much because shes not moving around.

guineapiglet can you talk your daughter into taking a year off and just resting for a while? From all I've read the earlier CFS is caught and the less they do to start with the easier it is to help them build it up again afterwards. I really struggled to get my dd into school as much as poss with the result that now she can hardly leave the house.

Hope everyone is doing ok, I met a really inspiring young woman yesterday who was bedridden for five years with CFS but is now doing so well that shes going to Uni in a couple of weeks.

Take care, cuppycake xxx

Forgot to say positive that dd was able to come to the support group meeting with me and it was really good. Everyone was nice and they all made us feel so welcome. One man talked alot about his symptoms and how he was feeling and I could see dd at the moment the realisation hit that she wasn't alone and here were a whole room full of people wqho knew she wasn't trying it on and understood how she felt.

I will definately be going again next month xx

v. brief hello here. Cuppycakequeen, just wanted to say that my dd has struggled enormously with nausea and stomach pain. We see a dietitian who has been brilliant. Do try to keep her eating little and often. I didn't manage that well initially and dd lost a lot of weight which took a lot of work to get back on again. Fatigue makes the eating harder and the nausea worse, so we do main meal at lunchtime, so that by the end of the day she can just have toast or something light. I was advised to not give her her food hot when she felt nauseous as the smells made it worse, so I always let her food cool and that has helped. Also advised to think more in terms of six substantial snacks a day rather than 3 big meals, so this morning she had a small bowl of readybrek and a tiny mug of hot choc, then at 10am she had a piece of cheese on toast, and she'll have something at about 12 and then 3 and 5. I've also been told to try to keep her blood sugars as level as possible, so that has been about always giving a mix of food at one go, as it takes longer to digest eg. crackers and cheese and fruit and a drink, or biscuit and raisins and oatcake, so she never just has a single food. Also eating foods which are slow release carbs eg. pasta, noodles, pearl barley, popocorn, pulses, bread with seeds , Pitta bread, oats. Since we have been doing that things have been better for her. I'm glad your support group was good. I remember when dd realised for the first time that other people had the same illness as she has. Big relief. Have you been in touch with AYME ( association of young people with me) yet? They have a quarterly magazine for the children, and dd loves getting it.
Guineapiglet - my dd has now missed a year of school completely so far, and hasn't really attended much for nearly 17 mths. I have to say stopping school was the best decision we made for her. I feel having finally ( on Dr Crawley's advice) got her on to a very good pacing regime which does not include any school at present, that I can for the first time in 18 mths believe that she will get better. Just off to have a walk with her. Hope everyone has a good day. Hello choc, positive, dwardle and 21

Thank you katsh this is very helpful, its interesting that a lot of the foods you suggest are the ones she fancies anyway - plain popcorn is a favourite nibble and she will drink hot chocolate when i cant get her to eat anything else.

Hope the DCs are all doing well - catch you soon

Cuppycake xxx

Morning everyone
Just another thought about what it was like when dd was at her worst. She was always a voracious reader and it got to the point when she could not read ANYTHING at all - this was an even bigger shock than not eating or the fatigue. When she started to pick up, she went back to really easy books she had read years earlier before she started to read anything 'normal' I think that is another reason why school is such a challenge - it's the cognitive demands as well as the physical.
Great posts everyone - thanks for doing the acronyms, Choc,and I totally agree with you re school and gcses and also about getting paed referral, and such helpful advice from Katsh. How is dd, positive - has she been into college?
A thought about paediatrician - it really helps to have a paper trail for teenagers. You can get special help re exams, e.g. dd does them in small room because of panic attacks and was also allowed rest breaks if needed. If you have a formal diagnosis from a paed, it saves any arguments. We plan to get a letter to go with ucas forms to explain why she has 6 gcses rather than 10 + AS which she was doing, when dd applies for uni. And our paed was really nice, sympathetic and reinforced all the things we knew we should be doing, ESP giving up school
Hope all the dcs are having a good weekend and the parents are getting some respite! So glad you had a great hol, by the way, Choc

Hi all,

A bit down here .

I knew that college was a risk. I understood that she might not be able to do this course as it is 11 hours a week and it might be too much for her. I knew that she would be really tired. I knew she would struggle.
....... I DID NOT EXPECT her downward crash to come so dramatically or so quickly. She has only been in 3 half days.

She's back to struggling to walk around the house, not having the energy to eat, but still seems to have the energy to be foul tempered with everybody else!!