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!

flora that sounds like a good routine. She's in day pjs too but it just wouldn't be possible at moment to get in into car. Supreme effort to walk to loo even. But may be something to aspire to

chocoholic cpn is lovely and so supportive even tho they have no services her just coming for a chat is brilliant

The anxiety and nightmares that she is having are I think very common, especially when you first get ill- everything is changing, you are no longer independent and it's scary not being in control of your own body. I find it hard as an adult so my heart really goes out to all the children and teens who get it. Is she on any medication? Some of those can increase nightmares.

You've had some great suggestions on the practical side of things, but I'm wondering if your DD might benefit from some CBT or counselling? (when she is up to it of course). I found that it was immensely useful at helping me adapt and change my mindset, and it was lovely having someone removed from the suggestion to talk to. On top of everything the guilt that comes with the illness can be hard to bear. Many of my younger M.E friends have been referred to CAMHS and found it beneficial.

And again last night. I am so tired. What I don't understand is why I am so exhausted (emotional?) although I do still have after effects of chemo I think. Hoping beyond hope that Xmas won't be as bloody awful as I fear

In a way I do think its very stressful until you just accept that this is how your life is now . I know that we have been a lot less stressed and a lot happier since we made our long term plan (1/2 years) regarding education etc , we've decided what we want and what's best for our dd ( with her ) and so no longer feel we have to jump through hoops for the education and medical people.

www.dailymail.co.uk/health/article-2522091/Ive-got-bones-100-year-old-Ive-bed-seven-YEARS-22-year-old-severe-ME-break-bone-just-sitting-fast.html

Oh god what a sad story! I hope dd doesn't stay sick for do libg

So long!
Xmas day has been bloody hard work with DH trying to enforce jollity and 3 guests who frankly I wanted to refuse to have. But I understand he needs normality. But it's not normal, is it?

A very sad story but also very rare. Hope you are OK today. Christmas is hard for a lot of us I think ... personally will be glad when it's over.

Yes it has been tough and finally got dd in bed on peace and quiet. I know she'll pay tomorrow for gigantic effort. Hoping things pick up soon for everyone!

I don't post on CFS threads very often and I hope I'm not offending anyone but I can't see why that DM story was linked to , how does that possibly help the OP ,who is obviously struggling at the moment ? TBH if I had read that in the very early days of my DDs illness I think it would have scared me half to death . Hope your dd has an enjoyable Christmas OP .

Agreed Flora ... I've read about that particular girl elsewhere but stories like that still scare the out of me. However, out of all the people my DD met on AYME none are as badly affected as DD and DD is not anywhere nearly as bad as that girl. Most of DD's contacts have now managed to work, go to uni and so on or at least get out and about and have a life.

Floralnomad - you're not offending me, I do think I shouldn't have posted it in this thread, there is nothing in there that assists the OP, other than knowing she is not alone in dealing with severe ME, which she already knows.

I know Jessica, the girl in the article As I said earlier in the thread the M.E world- especially for people who've been on AYME- is actually surprisingly small (it's like six degrees of separation or something!). She's an amazing girl, her strength and determination is awe inspiring really. As has been said though she's an incredibly unusual case, even people in the severe category tend to see improvement at some point. I know of a couple of aymers who have been that severe but not many.

Overthemill I hope your DD is doing okay today, and that she managed to have a nice Christmas. It may take her a while to recover but hopefully the memories of a nice day will have made it worth it.

Hi Overthemill. I'm so sorry to hear of your dd. It must be horrendous for you and her.

I have had for 2 years ME and am massively improved from being bedbound as I was for the first 6 months. Now I am nearly back to normal although I still need to rest and pace.

My advice would be to follow Dr David Smith's advice. He has a website and a 'get well club'. ME is a neurological condition so rest for the brain is very very important. So I had no telly at all, no reading, no computer for 6 months. The brain needs to be under-whelmed to recover. I very very gradually increased this just as I was able.

The things that have helped me most are meditation (lying down). This allows the brain and body to shut down and get deep rest. I would definitely not stop her from sleeping. Sleep is crucial for recovery. The only time I would limit sleep is if she's not sleeping at night.

The other thing which massively helped me was Gupta Amygdala Retraining and Optimum Health Clinic nutritional advice.

Thousands of people recover fully from this. I know of 5 myself. My Mum is fully recovered and I am hopeful that I will too. There is no reason why your dd won't get back to her old self in time.

Do look after yourself OP. factor in nice things for yourself in your routine too. Your health and well-being is a priority.

I'm happy to answer any questions you have

Hi, have been reading through soaking up information. DD was diagnosed in November aged 11. She has had a number of ongoing background health issues which we have tried to resolve over the years. In September she started Secondary school got a throat virus and crashed. The hard thing is managing school and our jobs. So much pressure from both ends. DD is probably at mild to moderate end but really struggling with school manages about 3 afternoons a week. School are helpful but clearly expect a quick resolution. My ex has told them I am making up her illness because of my psychological problems, which has not helped. I don't have any by the way apart from the stress and distress of having a sick child. Just seeking support and experience.

Hi polkadot well I feel I am at start of long journey! It's really hard isn't it? Dd is really poorly and no way she can do school. I had to give up work and cannot imagine getting back. School should be more helpful but I doubt they will because they all seem to think kids can make more effort!

Overthehill. It feels like that to us too. I can't stop work as I am main earner. Hubby is working at home as much as he can which is a godsend. I am looking at reducing hours. Daughter so much better in holiday's which makes people think it is a school issue. But they don't see what we see. The crying with pain, the weakness, the grey face. School is such a hard environment and teachers don't seem to get it. We have our first appointment with the specialist team on 22nd and it can't come soon enough.

Still waiting for referral to specialist to happen, 4 months she's been like this! Dd got sick last day of hols but she loves school and was so upset docs thought it was school issue. She just got a virus. Absolute pig of an illness. I used to be main earner years ago and thank we turned things around few years ago after she had bouts of childhood illnesses plus eczema asthma which are both really bad, enough for hospitalisation. Luckily we downsized and now although I'd recently started full time job as teacher after retraining our finances are pared to the bone already so we cope

We were lucky to see a specialist straight away due to me putting my foot down about another health issue after years of brush offs. So here we find ourselves, I am already worried about the school restart this week. Mind you school nurse called today and was really helpful. Apparently school were going down truency lines after my ex told them dd wasn't I'll, grr! Last thing we need, as if it isn't hard enough. She has sobbed in severe pain for 2 hours tonight, horrible, you feel useless. We are thinking about what we can manage work/money wisewise. Really I just want it to go away, but suspect we are in for the long haul.

I really wish you both (overthemill and polkadot) the best of luck.
Many people find the consultant appointment a bit of an anticlimax as there's not lots they can do. I don't mean to be negative but you might find your own research more fruitful in terms of what to do to get your dds stable and then improving.

As I said above Dr David Smith's website is a great starting point. Well it was for me.

I am fully expecting to be dissapointed. I know we have to manage this and I am reading up lots. Main thing we need is school liaison so that school stop pressure and we can concentrate on all our health. I have had a look at the site you have mentioned and found some useful information, thanks x

A friend had some luck with Mickel Therapy, after being recommended it by another mother at school.

Not cheap, but the counselling was also good for reasons beyond the illness (growing up etc)

Hi, I'm so sorry you all have this awful illness to cope with, I was diagnosed myself aged 11, that was 21 years ago. Am now mother to my 2.5 year old dd so I can relate to how hard it must be for you, as well as for your daughter. From a person point of view I find even things like having the tv on, talking, reading, lights and noises can all be way too much to cope with at times, it feels like when a "normal" person has bad flu & you can't get out of bed, everything hurts and is too much and makes you feel worse. I

would try letting your dd stay in bed and sleep, see if it helps, it has always helped me, I know not what the experts and their graded exercise would tell you to do, but it has always helped me and something I crave to be able to do now I have my little one! I would see the most important things to do each day at the moment as eating and drinking, toilet trips and tooth brushing, and with personal hygiene I have found some shortcuts when very ill over the years - dry shampoo and baby wipes! The main thing when she is this bad is just rest, do the bare essentials and do lots of research into who is best to see in your area - join the charities like ayme, 25 per cent group and find a recommended specialist near to you. Feel free to pm me - oh forgot to say I get very cold too and use wheat bags heated microwave with lavender scent, very soothing to aches and pains too xxx

Thanks for new posts. Had chat at docs yesterday as dd neded blood test to rule out coeliac disease and nurse who ended up taking blood (dd is hypersensitive at moment to pain and freaked out poor HCA with tears) said I should let her sleep more. She suggested two 30 min naps in day time as she was clearly so tired (this was at 11.45 and she'd been awake since 10.30).

She also said Ty tiny activities like a puzzle but was a bit amazed that home tutoring was about to start.

And today had huge fight with DH who has been talking to kind but no idea at all sister who is a GP who doesn't believe in CFS in teenagers who says we need to push dd to do a physical activity each day. So is that before or after she faints then?

sister who is a GP who doesn't believe in CFS in teenagers who says we need to push dd to do a physical activity each day

A GP who knows nothing about CFS?
She should go to this CPD accredited medical conference