post viral fatigue 14 year old

[overthemill]

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!

[Foxred10]

I caught glandular fever when I was 14/15 and was also diagnosed with post viral fatigue. I literally couldn't get out of bed, or down the stairs, I felt about 100!

It was the hardest thing I've ever gone through, and made all the worse by the feeling that my mum didn't REALLY believe that I was that ill, and was constantly pushing me to 'Just get out of bed for a little while, you'll feel better for it'. That may be true mother, if I actually had the strength to swing my legs over the edge of the bed

I know a lot of people are sceptical of it (and the logical part of my brain is too) but a homeopathic remedy really did help me I think. My dad got it for me on the basis that at worst he'd wasted a couple of quid. After over 8'weeks in bed, within 4 days of starting the homeopathy I was up and eating at the table with my family, and walking down the garden. I can't remember for the life of me the name of the remedy but I'll try and find out....

Wishing your poor daughter a speedy recovery

[Foxred10]

It was Kali Phos.

[overthemill]

thank you so much, i will see if i can get this locally. Any ideas on what to say to her that doesn't make her feel like i don't believe her? She feels very scared and vulnerable at moment.

[JugglingChaotically]

Have they ruled out all other options? Anaemia , vit D deficiency, under active thyroid? Worth checking all options before CFS to be sure.

[overthemill]

yes she has spent hours at hospital having comprehensive tests. Paed finally came to this conclusion.

[Orangeanddemons]

I had this after catching flu. The flu lasted 3 weeks, the post viral stuff lasted 12 weeks. I remember lying in bed wanting to sneeze and not having the strength to do it. Ex dp had to feed me, I couldn't even lift a knife and fork....or eat chips

[Foxred10]

My dad was incredible when I was ill, and because he worked from home took care of me most of the time. The things he did right were;

• didn't ask me how I was feeling all the time. "Still shit thanks" would have been the response....

• made me TINY portions of food I liked to try and get me to eat (minute cheese sandwiches for example, I kid you not, they were the size of postage stamps, but helped stimulate my appetite) or an eggcup with maybe 2 grapes and 1 strawberry chopped up small. Because they were so small I also didn't feel guilty about wasting food if I couldn't manage them.

• as I was effectively stuck in my room, made it as nice as possible for me - bought me a new pillow, brought me my favourite flowers every week to go beside my bed etc

• got me some audio tapes, as like your daughter I was bored stiff but couldn't concentrate to read. Tv hurt my head and eyes so just having headphones on listening was great

Just remembered just how flipping awesome my dad is......

[overthemill]

i did wonder about audiotapes but library no good for her age group. should look online maybe. we have watched online TV but she doesnt really care about it tbh.
i don't ask her how she is any more cos she's always crap! i do make her get up every day as docs insisting on it (she gets terrible asthma and needs to be upright) but she snuggles up on sofa with me.

food - so worried about her as she's losing weight, hugely. but she just struggles with eating.
I have basically given up work to be with her. sounds ridiculous but she needs me.

[Foxred10]

If you google 'audio stories online' there are lots of free podcasts.

Poor girl, she will get through this and so will you

[overthemill]

thank you foxred

[JugglingChaotically]

Wasn't being dismissive of CFS but DD has similar problem. Same diagnosis but a very long time and many tests later they found underlying cause. (Paeds consultant there too. New consultant, more specialised hospital found problem.and finally started dealing with it.)
The key was and is to make sure she knows you believe her. I was horrified at how many people and friends thought DD was faking it.
Audio books great. Lots avail for 14 - short podcasts on bbc or classics like Austen and Dickens or mysteries. We loaded up the iPod. You can fall asleep to them and just listen again.
DD liked listening to childrens stories. AA Milne etc. too.
Food is hard. Little nice things.small in quantity. Mini meals.
Keep a diary. Changes will be small but will come and a diary helps spot them. It really helps when you can look back and spot changed. Things that you could do that you couldn't do last week or last month.
Tiny things.
And that is huge for helping moral.
This too will pass - our mantra.

[overthemill]

JugglingChaotically oh how I wish there would be an underlying cause! It's very hard because she does feel that only I believe her and her dad (who comes from very tough GP stock) thinks she could pull herself together (and I fear he does indeed think that). Last night she cried herself to sleep worrying about GCSEs and her friends and if everybody hated her - like our dog who she has practically ignored for 8 weeks whose birthday it was...her hamster who she doesn't want to cuddle (and normally of course her animals give her huge comfort).

I've tried to explain that nobody hates her or is bored by her being ill. She doesn't believe it. I do worry that she is becoming anorexic, there is research that shows anorexia can follow a debilitating illness like this as she is almost averse to eating. You would not believe the things I have made, bought, prepared for her that would not normally find space in our home! But I think any food will do, high calorie preferably as I think her body has gone into starvation mode.

Also, after so much missed school, is there any chance she can catch up (before this she was A* predicted student) and she is so worried.

JugglingChaotically what was your underlying cause? I can check with paed next week.

It isn't fair, we have had such an awful 18 months (as I had cancer) and I thought this was going to be an amazing year

[overthemill]

ordered kali phos 30 online from tesco, will be here tomorrow. here's hoping

[chocoluvva]

A private consultation with a nutritionist might be helpful. The RDA of vitamins and minerals is for normal everyday conditions but she might benefit from short-term higher amounts of certain vitamins and minerals. Eg some of the B vitamins are used up rapidly when we're stressed.

There are lots of supplements to help the immune system and your DD would at least be getting all the micro-nutrients she needs despite her low calorie intake if she took a good quality supplement programme recommended for her specific needs.

[chocoluvva]

What a shame that's she's worrying about what people will think and about her school work.

There might be online forums for CF sufferers?

A thought re her GCSE's. If need be could she drop all the subjects she won't do at AS level?

[overthemill]

chocoluvva will look into nutritionist - funnily enough my sister is a paed and nutritionist but in USA! might ask her.

but re her gcses - i'm not sure that would help her but will think about it. She will be getting 5 hours a week tuition from medical unit. She is genuinely a bright and focussed student ordinarily and was top of her year at last report (before missing entire term so far!) and she wants to be a doctor - she will need really good grades at range of subjects to get into a good place. I am sure she'd be ok, and may be she will have to miss this whole year and start year 10 again but that would be a shame because she has friends in this school year, hard won as we moved and she struggled to start with. it is all just really crap!

[chocoluvva]

Oh. Your poor DD. It must be doubly hard when she's at an important stage in her education and worrying about it - not helpful for her recovery.

Is there a homeopathic hospital near you? They're usually excellent for offering complimentary therapies such as massage, aromatherapy etc. It must be very hard when she's so weak.

[mercibucket]

Up her iron vit d and a multivit
Try smoothies and juices or even one of those replacement meals
Help her keep in touch with friends maybe online

It took me 6 months to be 90 percent b many years til I was 100 percent

[chocoluvva]

Also, you could filter her drinking water through a filter jug to lessen her exposure to chlorine. A small thing, but it won't hurt.

[overthemill]

Great ideas, thanks will Google!

[amidaiwish]

you can get vitD in a spray, tastes like spearmint so nice to take.
also try something like sambucol, to get her vitamin intake up
DD is fighting a virus so we're trying all those things, plus probiotic powder every morning in milkshake - i think her immune system got shot in the summer from 8 weeks of antihistamines for bad hayfever, antibiotics and steroid spray for sinus infections etc...

all seem to be helping
good luck

[chocoluvva]

There are also multi vit/herb supplements for helping the immune system.

Best to buy a good quality make such as BioCare, Pukka, Higher Nature, Solgar, Viridian and others I can't think of at the moment.

Also single supplements such as the powders made from Cordyceps and Reishi mushrooms. I think these have been prescribed by Japanese medics for helping the immune system. Best to see a qualified specialist though. Nutritionists often advertise their own particular specialism - you might be able to find someone who specialises in chronic fatigue.

[chocoluvva]

barleygrass or wheatgrass powder is supposed to be very useful too.

[Shosha1]

Try looking on Libravox for free audio downloads.

I had this after swine flu and it was awful, took me weeks to get better, the thought of getting out of bed was just too much.

I finally had pneumonia and a collapsed lung from it all and only got better when I was hospitalised.

[overthemill]

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!