Months of worry about dd (16) just not sure what to do now - any advice?

[aufolandedonmyface]

My dd has been unwell fir a couple of months now . Extreme fatigue, weakness , breathless when walking, lack of appetite and weight loss. Its affecting her badly she us now down and anxious because shes so extremley tired all the time - she manages college three days a week but thats a huge struggle now and shes basically resting or sleeping the whole time shes home. She has had a 24 heart monitor a couple of months ago as ste fainted but we dont know the result yet as it hasnt been reviewed by cardiology.

The gp did blood tests a month back which showed quite high white cells so rhey reoeated last week but again havent had thise results yet.

today ive just been watching her lie in bed exhausted, it feels totally ridiculous i feel like shes just fading away! But we just keep being told well see how she is in a while or wait an unspecified amount if time for something else. Meanwhile shes having to lean on things to rest while she goes to college and can barely do anything else

she was in tears today because her college sent a letter saying her attendance had gone down to 90 % and she was now on an action plan- shes extremely hard working and gets really good grades but shes just struggling so badly now!

i have absolutely no idea what to do. I feel like i should be able to help but i just dont know what im dealing with - a physical illness, a mental illness - both i dont know.

has anyone experienced this because no ine i talk to in real life seems to know what the heck is wrong.

It sounds as though it could be post-viral fatigue. It can last months. I was wiped out for about 6-9 months when I was 18/19, it was horrible but eventually resolved on its own. Hopefully that’s all it is for your DD and she’ll be out the other side very soon.

Oh what a worry, I hope the results come quickly and shows something easily solved. I went through similar at that age and it was glandular fever followed by post viral fatigue syndrome - it did get better but I wasn’t very well for quite a while.

I’ve just gone through a mystery illness that lasted around 3 months with my daughter - tests showed nothing of note but it seems to have now got better but it was such a worry so I can empathise.

Have you / she been in contact with college? When term starts I’d be sending an email from both of you explaining what’s been going on and asking for ways college, you and her can make reasonable adjustments.
Similarly, contact the gp again and ask for more info.
good luck x

I'm in pretty much exactly the same situation with my DD(17) OP, no real advice but just wanted you to know you're not alone. Know exactly what you mean about watching her fade away, it's terrifying. Waiting on latest bloods and a scan for repeated UTI's (which may or may not be related to the fatigue) before GP will discuss next steps, meantime I'm creeping into her room multiple times a night to check she's still breathing

we have sent letters about appointments shes had but as she doesnt actually have any kind of actual diagnosis of anything its been a bit awkward to explain - just saying shes tired etc!

Sounds like me aged 13,14. I had glandular fever aged 12 which we now know caused post viral problems which unfortunately led to fibromyalgia. I'm in my 50's now and sadly back then my issues weren't taken seriously by medical professionals, I'll be eternally grateful to my parents for never doubting there was something wrong and that it wasn't 'all in my head'. Keep fighting for your daughter, hopefully it'll pass soon and she'll recover but keep pushing for answers

Do you remember the order of the symptoms appearing?
My dd1 had an eating disorder that went undiagnosed for almost a year because she had everyone convinced it was a physical problem.
As time went on she was losing more weight and of course started getting extremely tired, breathless, heart palpitations, stomach pain when she ate (which was the first symptom).

Meanwhile we were going to all sorts of appointments, scans, bloods, she even had a camera into her stomach under GA which showed nothing physically wrong.

It was then that the idea of an eating disorder started being discussed, it was a huge shock but then started making sense.

Her first symptom of stomach pain when eating would have been due to the anxiety of eating when her brain was telling her it was unsafe.

Dd2 however has had glandular fever and post viral fatigue, very similar symptoms but her illness started with a throat infection.

I was going to say glandular fever too. I had it at 19 and had very similar symptoms - I was dreadfully fatigued and unwell for months.

The first symptom i remember was being extremely tired but quickly after she started being more picky with food - she just says she doesnt fancy things or that it smells bad.
she does seem to eat especially things like gregs snacky foods bur she seems to have no appetite for bigger meals at all. Tbh i just wasnt paying much attention to things i just thought oh shes tired from college or similar and it wasnt until it started goign on for weeks that i really started just paying more attention to little things.

i dont rememebr any illness at the start of it no fevers etc.

She did have a blood test for glandular fever which was negative - althought she has had swollen glands on and off especially under her chin and neck so im not sure how conclusive the blood test is?

Post viral fatigue and glandular fever doesn’t cause you to lose weight. Go back to the GP. If he/ she doesn’t have an explanation they need to investigate further or you can try suggesting perhaps a referral to an unexplained symptom’s or non specific symptoms clinic? This varies by region by region but there should be your local equivalent.

Have she already been tested for Coeliac? Considered the possibility of eating disorder? Is she anxious about being unwell or is anxiety causing somw of her symptoms?

the lack of diagnosis at present does not mean all is OK. Keep going back to the doctors until one is found.

My blood test came back negative too but the GP said he would bet his house on the fact it was glandular fever. Apparently it’s very common to get a false negative. Obviously not that helpful as you will want to decipher exactly what’s wrong with her!! I really hope she’s feeling better soon, it sounds very worrying for you.

Take the school's letter back with you to the GP appointment and explain you need a doctor's note to give to the school that sets out her symptoms, the consequences this has for her school attendance and performance, and that it is being investigated. Not having a clear diagnosis doesn't mean she shouldn't be supported by the school.

My DD had similar.

they did test for glandular fever (it was negative) but the gp also said false negatives were common,

in her case it eventually turned out to be a thyroid problem (hashimoto’s thyroiditis) but it took a while to show in her bloods.

get your gp to look at a referral to your local CFS/me clinic.

my dd ended up dropping out of school as she was so ill (thankfully she made it past cases).

the CFS/me people insist on various tests being done to rule out other common reasons (that’s how we discovered the thyroiditis).

they helped my dd a lot as they accepted it wasn’t all in her mind.

if it is post viral - either post glandular fever or post covid or whatever - then she’ll need time to rest.

my dd had a couple of years out of education and then did a part time course and then an access course and now has a degree.

it’s not the end of the world.

I can't help on the illness.

However with college I would definitely get in touch and explain as fully as you can and ask for support for her not moaning.

Tell them:
She is clearly ill, the doctors just haven't worked out what it is yet.
When at home she is mainly asleep, not gadding about socialising etc.
It is costing her a lot of effort to go to college.
90% is exceptionally good in the circumstances.

Send an email in to her tutor, whoever sent the absence letter, and whatever the student support / pastoral / wellbeing department is called

Habs her thyroid been checked OP? If not might be worth asking for it to be checked.

I work in FE and agree with PP about contacting her College tutor and attendance officer. We have procedures for situations such as this. The letter was possibly just sent out automatically by admin who sends them at certain attendance milestones. Her tutor will know her better and be able to out a plan in place. She won’t be thrown out or in any trouble for this.(We have students on much much lower attendance percentages and a plan to support them is always the first thing we try). We sometimes put students on a reduced timetable for a while so they can recover whilst still staying up to date with some of their work. Her health is the most important thing at the minute. She doesn’t need to worry about the college letter at all.

As an aside, I also had similar symptoms at her age and was told it was anxiety several times over, but reading through these comments I now wonder if it was glandular fever as I had many of the symptoms.

I really hope she can rest over the Christmas break and in the new year have a meeting with her tutor. All will be fine on that front.

My niece (21) was similar. UTIs , back and fourth to GP, missed uni and work.
Eventually GP said she should go to A&E.
They suspected kidney stones, she had a high bp and then a rash which they attributed to penicillin. No improvement. Next they saw her spleen was enlarged and said symptoms lined up with leukaemia and put her on the 2 week wait cancer referral.

After tonnes of blood tests, no leukaemia. Huge lymph nodes so suspected lymphoma. After a full body scan, no tumours! All clear! Took 6weeks in total.

More tests showed EBV (causes mono and glandular fever) present. She still isn’t right but much much better.

But she has needed to be pumped with fluids and vitamins etc , the sicker she got the less she ate and the iller she got.

I think you should go to A&E , just to get a full investigation started. Don’t take no for an answer. Not saying it’s an emergency just go when it’s convenient.

My granddad was seen by 2 x gps, 1 hospital clinic, and a set of paramedics last week. All said he was fine with mild infection because his stats were fine like temperature and hr.
Thankfully one of his overnight carers refused to be dismissed and sent him to a&e.
He is being cared for now despite the dr shortages huge improvement.
He was dying of sepsis at home!!
At the hospital they have many more diagnostic tools than a gp, and are used to more complex cases that the gp can overlook when signs aren’t as obvious.