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post viral fatigue 14 year old(86 Posts)
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!
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
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.
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.
PS - the low heart rate also fits - EDS affects the autonomic Nervous system in a lot of sufferers
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
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
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
That's great news about the home leave. And glad that you are feeling calmer.
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
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
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.
Think they might be able to manage a firewall or something. I am so glad to hear that they aren't labeling her anymore. That's so wonderful that that registrar is including her....it can be really soothing. The good doctors often did that with my ds and it really helped distract him from the pain of the moment.
I do hope they are willing to look at the mitochondrial disease possibility.
sofia no internet because of pornography! Kids are allowed hospital iPods loaded with games and school type stuff but internet disabled. Lovely parent here offered me use of his dongle to use in cafe but it's 30 mins away and Dd so scared and anxious I don't like to leave for long. Have whizzed to coffee shop when dh here but missed consultant who dropped by with really important update. Too stressful. On Saturday my stepson has offered to come in at lunchtime so me and dh can go and eat together.
We're a bit happier and do feel they aren't labelling her but looking at everything to find out if any underlying cause. Lovely registrar has explained it very well using 'House' as an analogy for her and as she wants to be a doctor he's been explaining it to her as if he was teaching!
Locally we do have people who've offered to help and when she is settled I will accept. Looks like long haul. Am so grateful for your support, it means so.much to have it from someone who understands what it's like to have chronically sick child. X
Do you have friends or family to help you and give you a break? I'm glad they are letting your dd have her say. Please reach out for local mumsnetters if you need help. I wish I wasn't 6000 miles away.
It's so odd that they don't allow internet on the ward. Even the FAA has figured out that it doesn't bring planes down. And it might just entertain the patients and allow the families to connect a little easier. Oh well. I'm sorry that they think they need to keep her in for a few weeks. Hospital food sucks...even here in the fancy USA hospitals. When my ds was in one of the fanciest "best" hospitals in country for appendicitis, when they brought him his dinner (foul tasting unidentified broth), he asked for a Life Straw (those things you use in 3rd world countries to drink putrid river water). I had to order out.
sofia we are ok. Surviving. Today seen child mental health nurse, eating disorder nurse, consultant, and 2 registrars ( I think equivalent to 4th yr resident). Now saying 'features ' of anorexia and depression and she has been able to voice her fears. Talking about nipping things in the bud.
I'm happier but exhausted emotionally and physically. We'll be in hospital for a couple of weeks I think.
Can't do much as on ward with no internet allowed!
Thanks for kind thoughts.
overthemill how are you doing? Thinking of you.
Ask for a referral to a specialist ,some paediatricians are very narrow minded . The one we have for our daughter certainly gives the impression that he doesn't believe CFS is real , we see him as little as possible !
You poor thing....lots of hugs! Skype me if you need to chat.
Thanks everyone just had mini meltdown after consultant meeting. They are trying hard but clearly feel it's root is psych. She is very cross with them. But trying to hold it together. On phone so little internet access and poor keyboard. Why don't hospitals have WiFi?
I do hope she improves very soon; just read more of the thread and this is so distressing for you particularly when other people don't understand. I hope some of the advice here helps too and feel for you as was so stressed when our daughter was very ill too
Here is another article describing Cyclical Vomiting and how to diagnose it.
She hasn't been exposed to ticks has she? Just mentioning in case as DD had Lyme disease which doesn't always get a rash and can be missed. It is often confused for other things like ME
Poor overthemill and poor overthemill's dd. It's horrible being sick and even worse being sick in hospital. There is nothing wrong with a psych referral. It can be really disturbing and depressing to be sick all the time. If it is in fact mitochondrial disease, anti-depressants are often prescribed because they help both with the depression that is caused by not having enough energy to run your neurons, the sadness and frustration of being sick AND for some reason (they're not sure why) the physical part of having mitochondrial disease. Please forward all the information I sent you to your dh so he can understand too. Please also give the registrar (is that a trainee doctor?) the papers by Dr. Boles.
also look into [www.potsuk.org POTS]] (I thought i'd already posted in this thread but it appears not), some of the symptoms of which are fatigue and vomiting (gastroparesis). Does she feel dizzy when she stands, or feel her heart is racing? POTS is very often misdiagnosed as CFS, but is treatable (at least to minimise symptoms).
DD2 (who has POTS) was initially referred to a psychiatrist (because her paed at that time thought it was all in her head) who was actually really helpful and reassuring (she thought she was going mad, but just had a pretty extreme coping mechanism for dealing with not being diagnosed properly and feeling doctors weren't listening), and arranged a short course of counselling which let her realise that actually being a teenager is pretty crap and it was OK to feel like that. So psych involvement isn't necessarily a bad thing, and does't seem to be a stigma amongst teens IME.
Hope you get things sorted out soon though.
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