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!

Foxred10 Mon 28-Oct-13 21:30:00

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 hmm

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 thanks

Foxred10 Mon 28-Oct-13 21:33:15

It was Kali Phos.

overthemill Mon 28-Oct-13 21:42:18

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 Mon 28-Oct-13 21:43:05

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

overthemill Mon 28-Oct-13 21:45:07

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

Orangeanddemons Mon 28-Oct-13 21:46:42

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 Mon 28-Oct-13 21:50:48

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.... sad

- 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......blush

overthemill Mon 28-Oct-13 21:54:56

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 Mon 28-Oct-13 22:00:58

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

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

overthemill Mon 28-Oct-13 22:03:07

thank you foxred

JugglingChaotically Tue 29-Oct-13 05:24:43

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 Tue 29-Oct-13 08:42:27

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 Tue 29-Oct-13 09:31:35

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

chocoluvva Tue 29-Oct-13 10:04:43

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 Tue 29-Oct-13 10:12:22

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 Tue 29-Oct-13 10:48:29

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 Tue 29-Oct-13 12:52:12

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 Tue 29-Oct-13 13:04:02

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 Tue 29-Oct-13 13:29:19

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 Tue 29-Oct-13 17:44:21

Great ideas, thanks will Google!

amidaiwish Wed 30-Oct-13 11:10:45

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 Wed 30-Oct-13 11:18:56

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 Wed 30-Oct-13 11:20:02

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

Shosha1 Wed 30-Oct-13 11:23:11

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 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'.

Grockle Mon 04-Nov-13 00:05:40

Also, there's a regular thread here for people suffering chronic pain & fatigue. You're very welcome to join us.

SofiaAmes Mon 04-Nov-13 00:57:38

Grockle, please look at the website I linked to above for mitochondrial disease. Also, here is another support website for mitochondrial disease. Also, please try the "mito cocktail" (if your nutrionist isn't aware of it, he/she should be): My ds takes what I believe is an "adult dosage" of the Mito Cocktail: 2500 mg daily of L-Carnitine and 300 of CoQ10 (he also takes most of the other ones you mentioned) and there is no doubt that it has made radical improvements in his health. I have a good friend with lupus and rheumatoid arthritis who saw ds' improvement and decided to try it herself and it has almost completely treated successfully all her adverse symptoms and she has stopped all of her other harsher medications.

overthemill Mon 04-Nov-13 12:53:24

SofiaAmes that's really interesting as my dd does indeed suffer from migraines and we did self diagnose that she may have chronic vomiting syndrome after watching greys anatomy (not normally what we do but the symptoms were astonishingly exactly the same as dd in the episode). will look into that - seeing paed tomorrow.

SofiaAmes Mon 04-Nov-13 13:22:20

The short black actress in Greys Anatomy (I forget her name) has a son with mitochondrial disease who is treated with this "mito cocktail" by the same doctor (Dr. Boles) as my ds. She is the one who pushed to do that episode to help increase awareness of Cyclical Vomiting. Please contact me through mumsnet and I will send you a lot of information (Dr. Boles's papers etc.) to bring to your paed. It's actually really hopeful that your dd has the migraines and cvs too. It means that something as simple as a couple of supplements (with no adverse side effects) can treat her mitochondrial disease extremely effectively.

overthemill Mon 04-Nov-13 17:23:19

Chandra Wilson or Dr Miranda Bailey? Everything you've sent is so helpful, thank you. I will try anything, it seems like her whole life she's been sick on and off, hospitalused with vomiting and headaches, and multiple questions about her, and my, mental health rather than proper investigation into her physical health

overthemill Mon 04-Nov-13 17:24:17

Also, she's back vomiting again not keeping.much down. Trying tiny portions but anything that tastes is rejected.

Grockle Mon 04-Nov-13 19:02:57

Thank you, sofiaAmes... I will look at the links. I also have lupus. Life feels like a huge battle!

SofiaAmes Mon 04-Nov-13 19:32:37

I actually just double checked and the dosages are L-carnitine - 2150mg per day (split in half), CoQ10 - 500mg per day, Riboflavin - 200mg per day (split in half)
If you contact me through mumsnet I'll send you ALL the information that I sent to overthemill.
I completely feel for both of you. It's so awful being treated like you are making this stuff up (yes, I really want to lose my job and spend all on the phone with doctors so I can "pretend" my child is sick).
overthemill, despite my philosophical objections to putting dayglo colored things into my child's body, Gatorade is really the best option in one of these vomiting episodes to keep your dd hydrated and out of the hospital. And Gatorade now comes in clear, too (at least in the usa).

overthemill Wed 06-Nov-13 01:18:33

sofia Dd admitted to hospital today with anorexia as presenting condition but very thoroughly checked over by lovely registrar. He really listened and took very full history. See you emailed me but can't open on phone. He talked about CVS and other history. Dh very wobbly and am anxious though that consultant focussing on eating disorder rather than fatigue. Anyway must try to sleep, hard in noisy ward!

SofiaAmes Wed 06-Nov-13 04:41:41

oh gosh. I'm soooo sorry. Does the anorexia diagnosis imply that they think she is making a choice and is causing the vomiting herself? That's worrying. I think that CVS is often misdiagnosed as anorexia. My email was super long and chatty, but no attachments...wonder why you can't open it. Please let me know if there is anything I can do to help.

overthemill Wed 06-Nov-13 06:59:46

sofia to me and in front of her registrar saying Dd not presenting with body dismorphia and he thinks caused by underlying condition not diagnosed. But to dh privately he seems to be saying psych. I don't know. Feel so guilty so worried such a bad parent. Dd so miserable as they now appear to ignore her discomfort and illness

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.

SofiaAmes Wed 06-Nov-13 13:18:09

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.

looseleaf Wed 06-Nov-13 13:21:04

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

SofiaAmes Wed 06-Nov-13 13:21:52

Here is another article describing Cyclical Vomiting and how to diagnose it.

looseleaf Wed 06-Nov-13 13:26:53

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

overthemill Wed 06-Nov-13 14:58:31

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?

SofiaAmes Wed 06-Nov-13 15:29:28

You poor thing....lots of hugs! Skype me if you need to chat.

Floralnomad Wed 06-Nov-13 16:32:41

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 !

SofiaAmes Thu 07-Nov-13 16:25:06

overthemill how are you doing? Thinking of you.

overthemill Thu 07-Nov-13 18:43:51

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.

SofiaAmes Thu 07-Nov-13 20:18:17

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.

SofiaAmes Thu 07-Nov-13 20:20:12

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.

overthemill Fri 08-Nov-13 08:26:16

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

SofiaAmes Fri 08-Nov-13 14:45:18

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.

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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