CFS in teenager, can anyone with experience suggest a routine?

[overthemill]

Dd 14 recently diagnosed with CFS and waiting to see specialist cfs paediatrician out of our area as there is no one in our area. We know from reading that she needs a routine. She is really severely affected at present and is almost bed bound though by using bottom to come down and hands and knees to get up she is managing to come downstairs each day. But what routine should she have? I try to get her up around 10 but it takes about an hour ( more on days when I insist she showers) to get her out of bed and dressed. Most days I have to dress he and clean her teeth. She gets down, eats breakfast and stays on sofa until bed at 8. I try to encourage and stimulate her but it is very hard. Mainly we watch tv and chat a bit. Tbh she doesn't watch tv it's background for her. She can't bear bright lights or noise so lots of day we sit with curtains closed. She can't read or concentrate and a conversation is hard as she forgets words. Last week I got her outside (about 15 steps for me) to see her rabbit. Eating is hard as she struggles with smells and tastes and has to est same plain food every day. No variety at all. She tolerates eating but wouldn't do so unless I basically forced her! When she gets up to go to loo I have to help her up and provide balance for her as she is so dizzy and she faints frequently. I am scared to leave her alone. I get up to her several times in night and during evening when she is in bed.

So, what an earth can I have as a routine? What should she be doing? Today a maths tutor from medical needs team is coming but she expects to come say hello DNS leave. They font think she's well enough for tutoring. After Xmas we are hoping for a physio to assess her and an ot who can suggest ways she can be more independent as she hates me having yo provide intimate care for her.

Any ideas from you people with CFS experience? Am happyish to wait for specialist input but feel I may be making her worse!

good post choc very true

Our paed called dr crawley and because she can't do home visits at moment has suggested dr David vickers who is closer only 35 miles away.
I think you are right about bathing and washing but hair: mine all fell out last year because of chemo and is still only few inches long. It really upsets me and know she feels similarly. Will think hard. TV : oh god I bet you are right but maybe it's for my sanity? I need to think hard and work out what is important to normal ness for us. There is none at moment

Looking after myself feels impossible. I am only one who can care and no one local to help. Dd is very vulnerable and I dare not leave her

I really feel for you ... it sounds as if you have had a rough time yourself :( ... and totally explains the hair thing too. AYME have a very good helpline ... might be worth you talking things through with someone who understands. You can also sign up to be put on a local contacts list and there may be someone in your area who you could chat to. The thing with getting yourself in the position of being the only one who can care, is it is very draining and what happens if you are ill. I wonder if you could talk to your GP about this. Also, at least in the longer term, think about just a little bit of respite ... you will be better for it ... I know this is not easy (I am trying to work this bit out myself at the moment) but if you have a break, you will be able to cope better. I'll look in later and you're welcome to message me if you want to chat off the board.

chocoholic thank you

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I'm sure it probably won't apply to your daughter but has she been tested for Vitamin B12 deficiency? My 16 year old daughter had a miserable 2 years following her diagnosis of CFS/ME. She was very ill and extremely fatigued. An endocrinologist finally had her tested for this and bingo she was severely deficient. The symptoms are almost identical to CFS/ME but are treatable with regular injections of B12. She is now at uni and has her life back - if it wasn't for that endocrinologist I would be in the same position as you are now...... Sorry you are going through this - ((hugs))

I had CFS - bed bound for a year and about 50% for a few years. I'm good now. Suggest letting her rest as much as possible and every three weeks or so increase what she does by a teeny tiny amount - more reading or more walking etc

Hi overthemill So sorry your daughter is going through this, M.E/C.F.S is an absolutely wretched disease. Truly horrid, I would not wish it on anyone. Sending you un-mumsnetty hugs because right now it sounds like you are worn down by the situation and could do with them x

Firstly the fact that your daughter is still very young is a bonus; not much is known about this illness but research suggests that those who are children or adolescents when they develop it stand a higher chance of recovering or resuming a reasonable quality of life. So try not to panic or worry, because there is always hope.

I fell ill when I was 22 (26 now), and like your DD all I wanted to do initially was sleep. Although it is often advised to limit sleeping in the day so as not to disrupt night time it was the only thing that helped me feel even remotely 'okay' for a couple of hours in the day. If your DD wants to nap and is generally getting a good amount of hours at night then I would let her- sleep is vital for recovery, it's her body's way of saying it needs rest.

When very poorly with this illness it's important not to overstretch things, and the lower down the scale the less she should be doing. Allow her to concentrate on the basics for survival because right now it seems that it's what she needs; get food and drink in her to keep her strength up, help with bathroom and regular rests. Anything else is a bonus. I know that sounds terribly boring and difficult- no bones about it, it is. I know because I spent over a year bed bound literally doing nothing. If she is able to, find low level activities that can give her some pleasure without making her symptoms worse: colouring in, painting her nails, drawing, listening to audio books, meditation, puzzle books, writing letters etc.

The advice from experts in the field is that it's important to pace and not overdo things. A routine is good for this, but takes time to establish; from your post it sounds as though at the moment your DD is not well enough to be doing that much, so her routine needs to be incredibly limited. You say that she will come down for food sometimes, if she can't manage it can you take it up to her? When she is unable to wash or shower use wipes and dry shampoo? The book that CFSKate recommends on severe M.E is literally amazing, it's not that expensive and I cannot recommend it enough. It covers everything from mobility aids to benefits to pain relief to activity and rest. If you can purchase a copy then I would, it may be invaluable.

I have a few friends who were seen by Dr Crawley, is she still based in Bath? She helped a lot of them regain a reasonable level of functioning . Because your daughter is now missing a lot of school she is likely to get lonely, AYME is a brilliant charity for helping with this- they have message boards where people up to the age of 25 can chat (it's all moderated- I used to be one!- and only available to members) and can set her up if she wants with email buddies, pen pals and a local group where meet ups and things are held. They also have an online magazine and services especially for severely affected members. I made so many friends though them and would not have gotten through the last 4 years without them.

As a mum, it must be heart breaking to see her going through this; I'm over a decade older and yet when I was bedbound and being cared for by my mum she would have to go and cry in the other room sometimes out of desperation and fear for me. It must be even harder for you- relatives can often feel so helpless. There are various charities around with helplines that can offer carers advice and support, and there is an online site called foggy friends with chat rooms and a forum on all sorts of topics. Many carers and parents are on there and it is free to sign up. It might also be worth looking into Carers Allowance if you haven't already.

If I can help in anyway then please feel free to message me, sorry I have rambled on for so long! But when I read things like this it just transports me back 4 years to when me and my family were thrown into this awful world and felt so scared and alone. There is help out there and it does get easier, but sometimes it doesn't seem like it and it's hard to know where to start. Relapses and uncertainty just make it all even more tricky to get your head around! But over time you will. Also if your DD ever wants to talk to anyone then you can message something from her, or I can put her in touch with some lovely AYME members who are a similar age.

Stay strong and best of luck for the future. It will get easier x

Everybody, thank you for all your recent posts. Lots of useful information and ideas. Dd doesn't really miss the stimulation of friends or activities, it's a bit like she's in a little world of her own where the only thing is feeling ill. She keeps saying that she's got the flu and why won't everybody just let her sleep until she's better?!

Routine: it is so hard. I get her up at 10.30 which gives me time to do stuff in house, zoom to shop when she's fast asleep at 7.30 and a couple of times a week a friend might pop in to have a cuppa for half an hour. That's really the only respite I get and I so need it! Then get her up and downstairs, usually she is down by 11.30 unless showering or bath, then breakfast gets us through to about 12.30. While she eats we have tv on to distract her from eating as she feels so sick when eating. Then I have my lunch I take dog round corner for literally 5 mins, while she sleeps. Then tv or little chat and another doze for her. Lunch at 2 or 2.30 depending on how sick (with tv) and then a sleep. I try to get her rabbit in for cuddle (very rare these days) or fog might put his head on her lap. TV and more sleeping. Her tea at 5.30 while I start adult dinner. TV on for distraction. Sleep. Chat with dad when he comes home, ie how are you, fine, you seem better, I'm not really dad, don't be negative. Then sleep. Then tv (news for grown ups) snack and then thank god at 8 I start to get her upstairs and usually in bed by 8.30/9 depending on how long it takes to get up the stairs

Great post Newest Bride. My DD got a huge amount of comfort from her AYME friends and without them she would have had no one as her real friends deserted pretty quickly. Overthemill if you get her signed up as a SAM (severely affected member) she can receive letters without any reply being expected. All the info is on the website.
I am worried that your DD is using so much energy in coming downstairs and going back up each day. If it is taking her so long to do it has become more like a gruelling marathon, than the simple task it is for the rest of us. A lot of people say ME is like having a very bad dose of flu but the difference of course is it doesn't go away after a week or two.
I had assumed from your earlier posts that you were a lone parent but I was obviously wrong. Seems as if he could be in denial though? When he is around you need to try to get him more involved and to see how things really are. Let him take over for a bit at the weekends so you can have some time off. It is crucial you look after yourself for your daughter's and your own sake. Take care.

"he" being your DD's Dad .... didn't read it through properly before posting!

That's the thing with CFS, many people assume it's just fatigue but actually it's so complex that it can affect every part of the body and when severely ill it feels as though you've been poisoned. Your body is heavy, everything aches, your head spins... sleeping is not only necessary for recuperation but it is also the only time when you aren't left feeling horrifically poorly. There are times when honestly if someone waved a £50 note under my nose I wouldn't have the strength to take it! Your DD obviously feels so ill at the moment that missing her 'old life' hasn't come yet, but when it does there are plenty of places for support around.

If nausea is one of her main problems then there are definitely things the doctor can try; is she already on many medications? There's no cure but various painkillers and anti-depressants can help to relieve some of the symptoms. Things like amitriptyline and melatonin can help aid better quality sleep too.

The best thing to do for the time being is just follow your daughter's lead; let her say when she can manage things, and if she can't don't pressure her or force her to do them. Most CFS sufferers will tell you that the reason that their health has declined is from pushing themselves to do things they were not really capable of. If she isn't well enough to get down the stairs one day then can you find her nice things she can do in her room instead?

Chocaholic I probably know or know of your DD, AYME is a very small little world I hope she is doing 'okay' at the moment, especially with all the difficulties that Christmas brings.

I had severe ME.

Am not really sure about the routine thing, though it's probably useful to have a distinction between day (when there is support around) and night when those who can play a caring role will want to sleep.

What is odd, given that I was very ill for five years, is that I can't say, 'This is/was the solution.' It just helped if people understood where I was at, and listened and let me rest and didn't try to impose their theories on me.

I was an energetic person before I got ill (cycling everywhere, swimming.)

I did make a full recovery but it was a long slow process.

Just had such a good phone call from dietician who was amazing! Her dd has it and she just understood everything and made loads of helpful suggestions. I feel like someone in the medical team is on my side!

That's great to hear ... a supportive professional who actually "gets it" is worth a lot.

newest bride yes it had occurred to me that you and DD probably at least know "of" each other. She hasn't posted on AYME for quite a while now but it was quite literally a lifeline for her at one time.

That's great to hear that you have seen someone who was positive and helpful, it makes such a difference just to have someone who believes in it and wants to try to make things easier. Diet seems to improve things for a lot of people so I hope it eases some of your DDs symptoms.

Chocaholic I used to be 1987Katherine on ayme, but I turned 26 in the summer and had to leave. I miss the companionship of it though, it was a nice safety blanket when I needed people who understood! Best wishes to your DD, I hope she has a wonderful Christmas and a better 2014

Had a dreadful incident at 1am. Anyone any ideas? Dd woke at about midnight from a nightmare where she knew the house was on fire but she couldn't move enough to get out of bed. She woke sweating and terrified and couldn't move enough to get out of bed. Her leg/thigh muscle was in spasm as well and she could swing round or shuffle to edge if bed as she usually can manage. After about 20 mins (she has phone for time) she managed to get to edge of bed, fell out, and eventually crawled to door. Came to landing and stayed on floor for another half hour crying but not able to move. Eventually she got to our door (our room is opposite hrs, two steps for me) and opened door. DH woke saw her on floor crying her eyes out and got her into our bed. Where she stayed wretchedly crying, terrified and we simply couldn't comfort her. This was by now 1 am. After 10 mins I managed to get her back to her bed and lay down next yo her until she fell asleep.

But she was so scared and she is right, isn't she? How would she get out if we had a fire! I didn't hear her crying or banging around - usually I do but I was exhausted last night.

Anyone any experience of similar night fears? What can I do to stop her being so scared. I know she feels very out of control.
Thank you for all your support, I really appreciate it

I assume you have smoke alarms. My guess would be that some kind of survival instinct would kick in - yours and hers. If necessary you drag her down stairs.

Perhaps ME feels like a kind of death? Certainly it's scary..

The larger issue is about having much more restricted control of one's body than people who are in conventional good health. And having to trust others. It's a hard thing to live with

We live in small house and have wired on smoke alarm in kitchen which would work. I did talk to dd a little while ago about how we'd get her out in a fire (dad would carry her, she'd carry hamster cage and I would grab drugs, tortoise and dog! Fish would have to fend for themselves! I did it on a jokey way but know cos of previous experience working with disabled families that such a plan useful. She is though very scared of not being mobile and being out of control. She often says that's everything she does is for someone else (eg eat, get up, ) and it must be awful for her as a 14 year old who hard started the process of learning to be independent to be back with her mum cleaning her teeth, cutting up good and dressing her.

Not had any experience of night terrors but it must have been awful for all of you. When my DD was unable to move on her own she was downstairs and I always felt that in an emergency she would be able to summon up enough adrenaline to get out. How she is now, I know she would ... she would relapse badly afterwards but the adrenaline surge would get her through the emergency. The reality is incidents like bad house fires are very, very rare and provided you have working smoke detectors, things should be OK. You can reassure your DD on this. Also talk to your GP about this, he/she may be able to help. It is crucial that your DD can contact you if she needs you during the night and, for you, knowing that she can will actually help you sleep better. We use mobiles .. mine is always on and she will text if she needs me ... it does happen from time to time (obviously this would be no good if you were likely to receive a load of other texts in the night). I have also told her that if I don't come, she should ring the landline number which is next to our bed and that will definitely wake me. Failing that you can get walkie talkies or baby monitors fairly cheaply which should do the job. Sending you hugs today.

chocoholic what could GP do? Just wondering cos not finding them very helpful at moment. CPN calling later to see how we are( we have cpn because for some mad NHS reason in our county it's a child psych who looks after cfs). She is v helpful so may have ideas.

My dd is also 14 and has had CFS for 3 +yrs ( out of full time education for 2 yrs) ,she often has nightmares and ends up in bed with me . Re the routine ,you have to really plan it yourself around your DDs capabilities and then IME be fairly flexible. From the beginning I've always made sure my dd is downstairs during the day ( however we've got there) and even if she doesn't get dressed she changes into day pyjamas . At one point we had managed to get to a shower every other day but we've had a bad few months and are back to once or twice a week with me washing hair if we can manage it inbetween . We try to go out every day even if its only a drive to somewhere and she doesn't get out of the car I think its important that she leaves the house ,for the sake of everyone's sanity . Fortunately I was a SAHM before diagnosis but it is a great change in lifestyle for all of us . We have a home tutor at the moment ,who is fantastic . Good luck .

If you have CPN that is probably a better bet tbh, especially if your GP isn't that useful.