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!

ancientbuchanan Fri 08-Nov-13 15:11:58

Really important for her to be included. Our Ds was chronically buy cyclically ill and as soon as we included him in the discussions he became much more secure. He didn't feel ganged up on or left out of doomy secrets.

Poor you, poor her.

Registrars round here usually pretty senior.

overthemill Sat 09-Nov-13 09:12:52

She is stable and had good night. Issues with extremely low heart rate. Waiting for results of all tests before pushing for anything else but am going to ask for a repeat of glandular fever test as heard it can be false negative

overthemill Mon 11-Nov-13 20:59:11

She's doing really well and doc says she may be able to go on home leave this weekend. Still no news on diagnosis which has to wait but feeling calmer

SofiaAmes Mon 11-Nov-13 23:52:24

That's great news about the home leave. And glad that you are feeling calmer.

Rockinhippy Tue 12-Nov-13 00:14:54

Sort of - my own DD was well on her way to the same diagnose at 5yr old after she had pneumonia & just wasn't picking up after several months, so bad she could only manage part time school, we were at our wits end, especially as I have M.E & Fibromyalgia diagnosis myself.

She was constantly pale, dark circles & shaky. Thankfully I found out that Spirulina was safe to give her - gave her 6 a day split into 3 doses & she picked up so quickly it was nothing shirt of miraculous - colour in her cheeks after the first day & back to & coping fine with full time school within 2 weeks smile

I will come back in the morning with info on the best brand & what's in it - can't link on the iPad as all on the main computer

But in short it is a vitamin & mineral packed superfood with immune boosting enzymes too, you can take very high doses to aid recovery from illness - I found it very helpful for myself too, though sadly it's high in potassium, which I have to be careful with due to a BP drug I need to take, so I had to stop taking it & I do miss it

Though DDs problems weren't solved 100%, probably 90% - she later went onto be diagnosed with Joint Hypermobility Syndrome (aka Ehlers Danlos) which also causes extreme exhaustion, so it was partly down to loss of fitness because if her time in hospital & with EDS recovery from loss of fitness us much harder

My M.E/Fibromyalgia has also turned out to be EDS - so if this is a possibility, then you need to look at building up health with a tonic such as spirulina & gradually rebuilding core fitness

Hope that makes some sense

Rockinhippy Tue 12-Nov-13 00:30:56

I'm so sorry, I've just seen your updates I replied to your OP - I'm so sorry your DD has been put through the phsyc rubbish when she clearly has an illness, that is soul destroying for you all - stay strong you will get there - some doctors just don't like ailments they can't diagnose & fix easily, so like the phsyc labels as it absolves them of feeling helpless - sadly it's common practice - but you WILL get there in the end

Have a look into Ehlers Danlos - a symptom of it is POTs - which for some amongst other things can mean extreme dizziness, nausea - & vomiting

Rockinhippy Tue 12-Nov-13 00:33:03

PS - the low heart rate also fits - EDS affects the autonomic Nervous system in a lot of sufferers

overthemill Sat 16-Nov-13 18:33:27

We're home for a night and a day and back tomorrow morning to hospital. Really tired really fed up and confused. Too many doctors ruin the diagnosis, I reckon. Still focussing on food but she's doing well and out of danger zone. Just waiting for an answer. Saw one new consultant who said definitely chronic fatigue and terrified me by saying dd might get back to school this,academic year. Might? OMG.

Palika Sat 16-Nov-13 19:26:32

I didn't read the whole thread and don't know how far you got with homeopathy. But if you do, you should see an homeopathist - it is VERY good approach to deal with chronic fatigue or similar conditions.

Good luck!

overthemill Sun 24-Nov-13 12:42:16

Well we're home and it's really hard! She is on really strict eating plan but struggling to manage all the food. I feel like all I do is try to shovel food in her while she cries. No improvement in how she feels. Still so tired. Aches and pains and nausea. Wish someone could make her better

amidaiwish Thu 23-Jan-14 17:49:17

How are you getting on?

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