Dd being sent up to hospital

[Froppysue]

Don’t know if I’m worrying too much or not worrying enough!

She’s 14 and has been excessively tired, sleeping 16 hours a day, headaches and dizziness and has lost weight.

She had a blood test at the doctors last week, spoke to the doctor today who said it all came back within normal limits, but he wants her to go up to the hospital this afternoon to see the paediatricians there.

If the blood test was normal then what can the hospital do that the gp couldn’t? I’m a bit flustered tbh

Someone calm my nerves please!

Hope they have some reassuring answers for you.

I’m so sorry everyone, couldn’t get an internet signal. Thank you all for your concern and advice

We’re home now. Tbh the doctors on the ward didn’t know why we’d been sent there and they didn’t have any message from the GP so it took a bit of phoning around first, they were fantastic up there though.

Long story short they think dd has cfs - apparently this was even in her notes from a couple of years ago when she presented with joint pains and tiredness then (not to this extreme).
We’ve got an outpatient appointment booked with a specialist in a couple of weeks and have been sent home with leaflets and diary’s to fill.

They didn’t actually do any other testing at the hospital which I’m surprised about. They were talking about doing an ecg but then we were sent home without one, I think I’m going to make a list and bring everything up with our outpatient appointment.
The only things they said of note were her triglycerides were low, her blood sugars were on the lower end but still normal (presume this rules out diabete?) and her knees were very swollen, one more than the other.

Still a lot of questions, I’m not sure what I’m thinking right now and dd is quite frustrated, I think she was hoping there was something simple wrong that a few tablets would fix, she’s so fed up of feeling like this bless.
Hopefully we’re on the right track to finding out fully what’s going on and how we can help dd.

Thanks again.

Thanks for the update. Hope your Dd feels better soon and her CFS can be well managed.

If her knees are swollen it would be a good idea to make sure someone has checked her inflammation factors. Reactive arthritis, for example, can cause fatigue and weight loss, alongside the swollen joints.
www.nhs.uk/conditions/reactive-arthritis/symptoms/

I’d request a test for lupus x

@Froppysue

I’m so sorry everyone, couldn’t get an internet signal. Thank you all for your concern and advice

We’re home now. Tbh the doctors on the ward didn’t know why we’d been sent there and they didn’t have any message from the GP so it took a bit of phoning around first, they were fantastic up there though.

Long story short they think dd has cfs - apparently this was even in her notes from a couple of years ago when she presented with joint pains and tiredness then (not to this extreme).
We’ve got an outpatient appointment booked with a specialist in a couple of weeks and have been sent home with leaflets and diary’s to fill.

They didn’t actually do any other testing at the hospital which I’m surprised about. They were talking about doing an ecg but then we were sent home without one, I think I’m going to make a list and bring everything up with our outpatient appointment.
The only things they said of note were her triglycerides were low, her blood sugars were on the lower end but still normal (presume this rules out diabete?) and her knees were very swollen, one more than the other.

Still a lot of questions, I’m not sure what I’m thinking right now and dd is quite frustrated, I think she was hoping there was something simple wrong that a few tablets would fix, she’s so fed up of feeling like this bless.
Hopefully we’re on the right track to finding out fully what’s going on and how we can help dd.

Thanks again.

Seronegative inflammatory condition? Did her bloods include CRP as well as ESR?

If CFS is a real possibility, the ME Association is a good place to get information. (CFS is an alternative name for ME). They have many excellent information leaflets. I have experience of ME/CFS (not a health professional) and would suggest you be a little wary, as your DDs symptoms include weight loss which is not a 'defining' symptom. (Although I think it can happen). The main defining symptom is actually not fatigue but 'Post-exertional Malaise', which means feeling awful after exertion, physical, mental or emotional. This feeling awful is out of all proportion to the exertion and comes on either straight away or very often is delayed by hours or days. ME/CFS is similar to another illness called POTS and sometimes people have both. There are drug treatments for POTS. There is a new draft NICE guideline for ME/CFS which withdraws some treatments commonly used now, so its well worth reading up on it a bit.

To add to my post above, as someone with experience of ME/CFS I think you have a way to go before accepting that as a diagnosis and I think the alternative suggestions given by other posters are worth pursuing.

Other posters have said it better than me, but I think a second opinion would be in order.

Weight loss, tiredness, aches and pains, swollen joints - to me, that's a Rheumatology standard referral set. Even the headaches and dizziness could be neck joint related (but also check her pillows so that she doesn't sleep with her head at an awkward angle and pay attention to her posture - 'text neck' is a thing for many people)

TBH, knowing how bloody difficult it is to get a diagnosis (and how quickly medication can help to relieve symptoms and protect joints/tendons), and because the GP is genuinely concerned, I'd be scraping the money together for a private referral to a Rheumatologist, as they do see teenagers and can move her onto their NHS list if they think it's appropriate straight afterwards.

And then, if Rheumatology doesn't feel there is something in their remit, things like ME and Chronic Fatigue, as it would be crap to be handed the diagnosis and then not be able to access Rheumatology.

If looking towards CFS, can I recommend the charity
www.tymestrust.org

Even if it is not CFS, the advice may be helpful

Would like to throw in my tuppence worth. Actually, you can have glandular fever twice. I had it aged 11, (then it went into M.E although I wasn't diagnosed until a few years later.) When I was 17, I had GF again. Hope your daughter starts to feel better soon.

Oh god I’m so sorry I didn’t think anyone else had even replied!

I’ve thought dd has had lupus for years, she gets the malar rash and everything but apparently one negative ana years ago rules that out completely 🤷🏻‍♀️

I don’t actually know what her bloods all included this time tbh, I don’t even know what a crp or esr are.
I agree she needs a second opinion, or a rheumatologist or something - things definitely aren’t right and I don’t want the final diagnosis to be cfs before everything else is ruled out. She’s in so much pain, she’s sleeping 16-18 hours a day, she’s not even wanting to go out for walks anymore as they hurt too much.

I haven’t had the outpatient appointment through yet but when I do I’m going to have everything written down and read out and make sure I’m heard. Any advice?

Thank you all so much.

Don’t know if anyone is still interested, but updating for advice/chat through my worries incase anyone is.

Dd had a fainting spell/fit tonight. It was terrifying. We phoned 111 and ended up with the paramedics coming out a few hours later, luckily dd was fine by this point so they were happy to leave her here. Keeping a very close eye on her.

We have an appointment at the end of the month, although I was very confused that it’s not with a consultant, it’s with a registrar who then decides whether to pass dd on... so not the specialist I was told we’d be seeing.

I’m getting so frustrated and worried sick about dd and I know she’s feeling it too. We just want some answers and a way to help her feel better.

I've skimmed the comments but it's 4am and I'm sleepy, so I'm sorry if this has been mentioned. Please do check if your daughter has been checked for coeliac disease, as you've mentioned long term onset of tiredness and that she's underweight. It can present with a whole range of symptoms - I didn't have the classic diarrhoea problem, so doctors didn't spot it.

And I hope you have some answers soon

I'm glad your dd felt better by the time the paramedics arrived - although it must be frustrating that they didn't see her whilst she was having her episode.

This must feel very frustrating and scary for you. I'm sure you're keeping a daily log of all the things that are happening just in case it helps.

Offering a hug in the middle of the night.

Sorry not sure if it's mentioned but could you go private to get a quicker diagnosis?

I've had lupus since I was 19 (probably earlier, but diagnosed then). I've had a fewer than 50% positive ANAs. By that I mean, about 50% of the time the test has been run, it's come up negative. (I've had this for about 40 years at this point! Many many blood tests) A negative ANA does not definitely rule out Lupus! You need to get her to a rheumatologist.

Poor you. It's a very unpleasant situation when you are ill and you don't know why. You find people blasé and feel like you are being fobbed off, or not taken seriously.
I would ask GP for a copy of all the bloods and tests recently done.
Good luck with getting answers.

Sorry to hear about your daughter, the worry must be really stressful.
Has she ever had a rash other than on her face? My daughter was diagnosed with HSP a year back, an auto-immune condition like lupus that is easily missed as it presents in many ways. A purpuric rash, usually on the lower extremities but sometimes on the upper body or face, and painful and swollen joints are classic symptoms. It can also cause headaches and fatigue. My daughter is exhausted when she has a flare and describes it as feeling drained even when lying down.
HSP can also cause kidney problems, digestive issues, and very occasionally neurological problems so it’s a systemic condition.
Just a thought... the swollen knees, fatigue and rash you mentioned jumped out at me.
Hope you get some answers soon and don’t be afraid to really push for consultant involvement.

I’m afraid I’m not medical in anyway but sending you lots of love and best wishes for a speedy recovery for your daughter. I hope you are also ok. Try and stay calm - I know it’s easier said than done. Definitely make notes of all your questions before your appointment. I would also look up some of the terms in the comments (but don’t disappear into a spiral of doom!) just so you’re informed when you have your appointment. Also maybe follow any health tips that aren’t medical whilst you wait. Like checking her pillows and mattress, what’s she’s eating and drinking foods to help lower inflammation in the body ... tho just gently I understand you don’t want to cause your DD more annoyance. Thinking of you

Another Lupus suffer who has had plenty of negative ANA'S. Im in my 60s now diagnosed after almost 2 years of test at 40, but had recurring miscarriages in my 20s and 30s and 3 very prem babies,so the likelihood that I've had it a lot longer is strong. I also have been diagnosed with CFS and Fibromyalgia now. Keep pushing for more tests.

I too am wondering if this is HSP? Your daughter needs an urgent referral to a Rheumatologist, in light of what’s happened overnight, can you contact your GP or the consultant’s secretary to see if they can fit her in earlier? All symptoms suggest an autoimmune disease, full bloods are needed (ESR/CRP for inflammatory markers) and antibodies (e.g. ANCA for Vasculitis) at a minimum. This is the time to keep pushing to get this escalated, sadly it’s the only way and I speak from personal experience.

One more thing to rule out, with the Malar rash and swollen knees being a red flag, is Lyme Disease