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!

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.

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.

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.

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

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

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

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).

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!

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.

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.

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.

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

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

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

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?

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

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 !

overthemill how are you doing? Thinking of you.

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.

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.

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.

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

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.

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.