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post viral fatigue 14 year old

(86 Posts)
overthemill Mon 28-Oct-13 21:21:39

following a really bad virus dd has been diagnosed with post viral fatigue, after about 8 weeks. She has been constantly ill since the virus and is really, really unwell fitting all the diagnostic criteria. She has no energy, is totally exhausted, has no interest in anything, has lost all appetite (but does eat when forced), cannot read or do anything that requires concentration. She is off school.

Anyone with nay experience of this who could offer advice - how long might it last, what can I do to help her, what foods to try to tempt her? Anything really!

overthemill Wed 30-Oct-13 21:14:03

thanks for these new suggestions, will see what I can find out locally though we seem to be in a bit of a desert complementary medicine wise.

funnily enough, she had swine flu and was really really ill for 2 weeks then seemed ok!

chocoluvva Wed 30-Oct-13 21:49:07

There are lots of reliable online sites for health foods, vitamins and mineral supplements eg Bodykind and Higher Nature.

Wishing your DD a speedy recovery.

whyayepetal Fri 01-Nov-13 16:13:31

Hi overthemill sorry to hear you are having a bad time. My DD(14) has ME (some similarities to CFS/PVS but not the same) and has had 2 years out of school, or attending part time. This is a much misunderstood condition, and she really needs the support of her whole family. Things we found useful:-

Rest is good - too much too soon = relapse
Attending school occasionally (even just for a lunchtime or one lesson) is good to keep up social contacts
Look at tymestrust website, also ayme (association of young ME sufferers). Useful information plus helplines which are a great support. Also AYME has a forum for teenagers to talk to each other, which my DD found very helpful.

Best wishes to your DD thanks

WheresTheHoneyMummy Fri 01-Nov-13 16:36:28

Sorry, not read the whole thread yet but wanted to say my DD (14) was diagnosed with PVFS a year ago. Would it help your DD to communicate with mine and know she is not alone? Please PM if she would. Going back to read thread and take note of advice given, will try anything to help my poorly girl.

DziezkoDisco Fri 01-Nov-13 16:50:29

She must rest rest rest. i had ME/CFS for a long time but am completely better now. If she rests now she will be better sooner.
Acupuncture and reflexology both helped me.
She mustnt over do it one day and rest the next but must just be constantly doing less than normal so that her body feels safe to recover. Ime its as if the immune system over reacts to stimulace (like activity) triggering flu ike symptoms.

overthemill Sat 02-Nov-13 13:23:42

can anybody suggest any food to give her? she is losing so much weight and has no appetite at all, even food she normally loves are repulsive to her and i just cant get calories into her

chocoluvva Sat 02-Nov-13 15:11:58

Nuts and seed are usually calorific - but maybe not very appetising sad. Chocolate covered raisins and brazil nuts or peanuts have lots of calories.

Would she perhaps like a little bit of smooth soup - cream of chicken/tomato/mushroom with a swirl of cream in it?

Fruit smoothie made with yoghurt?

Cold cooked chicken breast with mayo?

I second the poster who advised you to offer tiny portions of food. A plateful can be really off-putting.

twentyoneagain Sun 03-Nov-13 19:19:44

My DD is now 18 and away from home studying but she was diagnosed with CFS aged 13 and struggled for about eighteen months. It followed a bout of flu and I do remember how sad I was for her.

We were lucky that she continued to eat well but we did buy some of the "Build Up" drinks from Boots which helped no end.

Look up Dr Esther Crawley who is a paediatrician with expertise in this field. She does see children from outside her area, but you will also probably find plenty of information on CFS if you google her name.

Just remember - your DD will recover from this but it takes time and patience, school will have to take a back seat for a time while you build your DD back up. I know it's hard but try not to worry - she will get better.

overthemill Sun 03-Nov-13 20:43:49

this is the advice we have had but i dont see how on earth she can do this:
"The condition becomes a self-fulfilling prophecy if you are not careful. Getting up and dressed at a reasonable time every day and planning daily exercise which is gradually and steadily increased is the only way out. You have to be firm and clear that this is the only way she can and will feel better."

what do you all think?

mercibucket Sun 03-Nov-13 22:34:22

that is not standard recommended advice for me/cfs imo

SofiaAmes Sun 03-Nov-13 22:42:44

Are you sure they have checked her vitamin d levels? There is a very strong association with Vit D deficiency and fatigue. Also has there been any discussions of mitochondrial disease? My ds has mitochondrial disease and has regular bouts of chronic fatigue. He is much better after starting on a treatment (high doses of l-carnitine and CoQ10). Before the treatment he would get migraines and Cyclical Vomiting. Here is a website with lots of information about mitochondrial disease. It's very under-diagnosed and it's becoming increasingly clear that mitochondrial issues are at the root of a variety of symptoms and syndromes.

SofiaAmes Sun 03-Nov-13 22:49:23

My experience with ds and episodes of chronic fatigue has been: I let him sleep (he does 20+ hours a day) the first few days. I always wake him up for meals. Then after 3 or 4 days I try to encourage him to listen to an audiobook (he finds it hard to focus his eyes when he is fatigued) outside (we live in Los Angeles, so this is practical all year round) for 30-60 minutes each day. And I try to increase his awake and "active" time each day. His episodes generally last 10 - 14 days and occur every 6 - 8 weeks. The doctor has said that gentle exercise will help and he keeps reminding me that the sleep does not alleviate the tiredness. So, the point of getting them up and about, is solely to keep them from establishing a habit of doing nothing. You must remember that a child (or adult) with chronic fatigue, is truly exhausted and without energy. It's important to get them up so that they don't develop a habit of sleeping all day, but you must also remember that their ability to be active is far far far less than an average person's.

SofiaAmes Sun 03-Nov-13 22:50:58

Get a subscription to Audible for audiobooks. They aren't too expensive and are always offering good subscription deals.

SofiaAmes Sun 03-Nov-13 22:52:33

If you want to contact me through mumsnet, I'd be happy to forward more information about mitochondrial disease and the treatments.

mercibucket Sun 03-Nov-13 23:05:24

with 'exercise' this could be 2 or so minutes of gentle yoga - fine. but to push it beyond her levels will be enormously unhelpful. i understand the meaning behind the advice, but when you have eg flu, you start doing things again as you stsrt to feel better. you dont just stay lying in bed because you have got in the habit of it. it is very important to have confidence in her and not imply it is a bad habit she has got into.

Floralnomad Sun 03-Nov-13 23:13:09

My 14 yr old dd has CFS and has had for about 2.5 yrs ( has a home tutor) ,routine is the way forward and at least maintains a level even if its not a particularly high level. Getting up every day at a reasonable time and at least trying to do just small things is the way to go . It's very difficult for the whole family and very draining ,good luck.

SofiaAmes Sun 03-Nov-13 23:13:44

Yes, I agree mercibucket. I was not intending that the op should give that implication on to her dd. It was meant really as an explanation (as given to me by ds' specialist who deals with his mitochondrial disease) of why he shouldn't just be left to sleep all day. And it is really important to remember, as mercibucket said that the "exercise" may well be a little as a few minutes of a gentle activity. At the worst of one of ds' episodes, getting up and walking to the dinner table (and no, we don't live in a mansion) was all the exercise he could manage.

SofiaAmes Sun 03-Nov-13 23:15:27

Please...all of with dc's with cfs....check the link I gave above about mitochondrial disease. The information is really only just making it from the scientists to the specialists and is not anywhere near the average gp. (My parents are both scientists and my father works on mitochondria...so I got in the loop early).

mercibucket Sun 03-Nov-13 23:21:10

oh yes, sofia, i just came on to post how helpful your posts were

no, i was thinking of whoever gave the initial advice which made me feel a bit hmm

Loveleopardprint Sun 03-Nov-13 23:22:04

Hi. My 14 yr old had some kind of horrible virus last half term. All she did was sleep for about three weeks. She completely lost her apetitie which totally freaked me out as she is 5ft 9 and a size 12 so has always eaten well. It has taken about five weeks but she is starting to eat again and take an interest in friends and school. Don't know if this helps but just wanted to empathise really!!

goodasitgets Sun 03-Nov-13 23:26:59

These multi vits are pricey but v v good (prob cheaper on amazon or eBay) www.naturesplus.com/sourceoflife/products/index.php?search=gold

Would she drink something like milk/oats/banana/peanut butter blended? You can use hot milk
Anything is better than nothing, McDonald's milkshakes, ice cream, apple pie and custard?

SofiaAmes Sun 03-Nov-13 23:32:50

For me the worst has been other parents who do not have sick children. They are constantly implying that my ds is making it up, or pretending to be sick, and that I should just insist that he gets up and gets it together. It's enormously stressful supporting a chronically ill child and sooo unhelpful when uninformed professionals (medical and educational) and parents give you bad, uninformed advice.

ancientbuchanan Sun 03-Nov-13 23:56:44

What junk food used she to like? I know I may be flamed but GOSH used to tell me to get something down Ds and not worry too much what it was.

He didn't have this but a rare condition that has left him pretty anaemic. They wanted liquids and calories in the first instance. He liked tiny amount of Jacobs cream crackers ( about an eighth) with a dash of laughing cow cheese, perhaps one tenth of a bit of sausage if I was lucky, and a thread or two of super noodles that I would do in chicken broth. Not all together, one of.

I gave in on coke, because my BIL was using it in emergencies in refugee camps so I reckoned it could be useful. And the other tip was to try to persuade him to drink through a straw as you drink more that way.

ancientbuchanan Sun 03-Nov-13 23:57:48

And he would sometimes eat an olive. One if the not too greasy black ones.

I do feel for you and the others on here.

Grockle Mon 04-Nov-13 00:04:38

Hello,

DO you know about the Spoon Theory? That's a good way of understanding & explaining it to other people.

I have ME & Fibro & have tried a variety of things. I'm currently seeing a private nutritionist who has me on a load of supplements to try to solve the mitochondrial problems. I don't know if it will help your DD but I'm on mangnesium (v important, apparently), zinc, probiotics & B vitamins.

So sorry your DD is suffering. It feels horrible to be so incapacitated, simply through being 'tired'.

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