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Original poster

Dd being sent up to hospital

123 replies

Froppysue · 02/03/2021 13:39

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!

OP posts:

LittleGreenGoblin · 18/03/2021 07:10

I hope they get to the bottom of it OP!

I wouldn't be concerned about seeing a registrar as it will likely be a specialist registrar who is not far off being a consultant. IME registrars take some of a consultants caseload during a clinic to make sure everyone gets seen and also for practice for them! Whenever I've observed consultants in clinic, their registrars are always popping in and out with questions and clarifications, so your DD will still get the specialist attention she needs

Oblomov21 · 18/03/2021 07:13

Sometimes people get fobbed off for years. I've read many threads of such on mn, some here on this thread.

I watched a Facebook video where the mum of a girl who was overweight and permanently hungry finally found out she had prader Willi syndrome.

I hope this doesn't happen to you. Keep pushing!

Mmn654123 · 18/03/2021 07:13

Swollen knees doesn’t sound like CFS. Maybe he sent her because he’s concerned that she is chronically fatigued - ie as a symptom, not a diagnosis.

Sounds like a full work up is in order. With chronic conditions sometimes you have to wait for symptoms to emerge for a diagnosis to become clear. Registrars do clinics under their consultants so I wouldn’t worry about that - they always communicate between themselves about cases. Registrars are quite senior and specialist.

Interested in this thread?

Then you might like threads about these subjects:

Children's health General health

Londontown12 · 18/03/2021 07:19

Just seen this thread
Sorry to hear your dd has been poorly
I read on your post about rheumatologist appointment and you thought she could have lupus but blood tests clear but she is in pain so can’t walk but also has a rash ?
Have u maybe thought psoriatic arthritis !
This doesn’t show up in blood tests but can cause stiff swollen joints fatigue and psoriasis x

rainbowstardrops · 18/03/2021 07:19

Oh your poor DD. I hope you all get some answers soon

mindutopia · 18/03/2021 07:37

I just wanted to add that it’s possible to do many of these blood tests yourselves. C-reactive protein, ESR, coeliac and ANA can all easily be done at home by post through companies like Medichecks or Thriva. I’ve done all of them this year due to trying to move forward my own diagnosis. You will have to pay but it won’t cost more than about £60-200 depending on what you have done. It may be worth doing so you can bring that info to the registrar to get them to listen to you and to know what can potentially be ruled out.

HoppingPavlova · 18/03/2021 07:44

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.

It will be the consultants registrar, who contrary to many comments on this thread will actually have a clue. They will also chat through with the consultant when making decisions, essentially they will do the information gathering and groundwork.

To all those saying, get a second opinion. On what? Seems like they are tossing around ideas and hypotheses at present and need further information - which they have asked OP to go away and collect/record over the next few weeks - which will then dictate how they move forward. That may be with a preliminary diagnosis with more investigation required, it may be a transfer to other specialties if they believe that's where further investigation is required at this point. None of this is quick and nor should it be if you want the right diagnosis at the end of the day. Frustrating yes, but it's a process and unfortunately this stuff is often protracted to get it right so being bounced from pillar to post is not always a bad thing.

As well as the information you have been asked to collect, there is no harm in questioning whether it could be a number of things and some of those they just won't have answers to if further investigations or specialties are required as part of the diagnostic process but they will be able to tell you clearly why certain things are being ruled out.

Maddy456 · 18/03/2021 08:13

Hope you are all ok x x

kumarkuldeep6 · 18/03/2021 08:13

Does she eat properly? If she isn't ingesting nutrients she would get all those symptoms... maybe your doctor wants a second opinion.

OhYouBadBadKitten · 18/03/2021 08:16

Depending on where you live, there's no history of a tick bite is there?

supercritter · 18/03/2021 08:31

Sorry to hear this. It's taken us years of being fobbed off with cfs to finally get a diagnosis which in our case is hyper mobility and POTs. Still having to advocate hard for her at every stage and she's still too sick to go to school. Hope you get some answers soon

Firststariseetonight · 18/03/2021 08:34

Sorry if thus has been checked but have they definitely ruled out rheumatoid arthritis? Just the joint pain and swelling and excessive tiredness would fit and it is often missed.

WATSFORTEA · 18/03/2021 08:50

I had cfs at the age of 14 following a nasty virus that left me bedridden for a couple of weeks. Even when I was able to get up my joints really hurt and I was constantly tired. Years later I do get tired easily but deal with that by going to bed early. The early years of cfs was awful and I even lost a job due to it. Hopefully the hospitals can do more than what was offered to me. x

Teddybelle · 18/03/2021 08:52

@HoppingPavlova While this is undoubtedly true and of course doctors need to be given the chance to gather info and make a careful diagnosis, it’s also the case that medics don’t always know what they’re looking at. I don’t blame them at all, some conditions are rare and a doctor might never have actually seen it out of a textbook. As a parent, you need to advocate for your child and push when it seems things are not being taken seriously enough. My daughter’s HSP rash was thought to be an allergy or even insect bites, her stomach pains ‘just one of those things’. I encountered several doctors who really didn’t know very much about her condition at all, others who were very well informed. I have every respect for doctors and the NHS , and I can imagine parents who think they know better must be really infuriating to medics ... totally get that ... but as a parent, you do know when something isn’t right and being meek and accepting isn’t always the right approach.

littlefireseverywhere · 18/03/2021 08:57

That sounds so terrifying for both you and DD. I think I might push to see the GP again today and get referred again as the fainting and fitting is a significant change. Really hope you both get the help you need.

littlefireseverywhere · 18/03/2021 08:59

Sorry, just read about the consultant, maybe worth calling their secretary and explaning change in symptoms. There may be a nearer appointment / cancellation?

trickyex · 18/03/2021 09:07

Am sorry to read all this OP.
I second the poster who mentioned getting private tests.
Have a look at Medichecks and see what they offer.
I think in these cases its worth learning some medical jargon and informing yourself what the blood tests are for.
Ask for print outs of your DD's blood tests.
The NHS is generally pretty good but you do have to be much more assertive than you might imagine to get the help you need.
Healthlocked.com is a great resource and you will find help there as well as here.

HunkyPunk · 18/03/2021 09:18

Healthlocked.com is a great resource and you will find help there as well as here.

Think you may have meant healthunlocked.com? There is a healthlocked.com, but it's a health insurance website. Apologies if that is what you meant.

HoppingPavlova · 18/03/2021 09:42

As a parent, you need to advocate for your child and push when it seems things are not being taken seriously enough.

Yes, of course and I didn’t indicate differently. But how is this not been taken seriously AT THIS POINT? How are second opinions immediately required when the OP doesn’t even have a first yet as it’s being worked through? What you are saying only holds true if a diagnosis has been given that has not taken everything into account. Then absolutely, advocate and push but I’m not getting the hysterical approach many have put forward as being required AT THIS POINT. What has been left out or not considered at this point? It’s just information gathering, then likely further tests based on that, then maybe some discussions behind the scenes with other specialties to bounce some stuff around, then maybe bumping over if needed. Maybe this will happen again with new specialty then a diagnosis. It’s long. It’s protracted. That DOES NOT mean it’s not being taken seriously. It’s frustrating. I get it. But what would OP be arguing about or ‘pushing for’ at this particular point apart from a crystal ball for all concerned?

I also have a disabled child (older teen) with a lot of complexities and ongoing rare issues so I’ve worked all of this from both sides of the fence. Don’t think I’m blind to it.

ekidmxcl · 18/03/2021 09:52

You definitely have to push and pester for more tests and help, and quicker. A friend of mine has spent 3 years begging for medical help for her child. At the end of the 3 years, a brain tumour was discovered. The symptoms were nothing at all like your dd’s so I’m not suggesting this is what’s happening to her. But the child had classic symptoms, brushed off by medics as part of childhood!

52andblue · 18/03/2021 09:59

@toocold54

Glad the GP has suggested a visit - I hate the "come back if theres no improvement in 3 weeks" type of responses.

Me too.
You’re probably more nervous because your GP has sent her to hospital as usually this never happens but it could just be that the GP is on the ball rather than anything being seriously wrong. I do hope she is ok.

I hope your Dd is okay, OP. Mine is the same. Bloods showed low lymphocytes and low ferritin. She also has low BP and has been given a peak flow meter as her breathing is laboured. GP didn't even bother to call re bloods. I had to find out from surgery: 'we'll re do the bloods in 3months, give her an iron rich diet. Meantime School are sending her home fainting and ill. I think she had C19 last Easter and its post viral?

I hope you get to the bottom of it with your Dd x

lborgia · 18/03/2021 10:00

I’m not going to be hysterical, but CFS ought to be an absolute LAST diagnosis, one of exclusion. They’ve not done anything like enough to have just jumped straight to CFS.

Obviously they will have lots of results that we dont’ know about, but really, the registrar will hopefully take their time, and come to a decision that includes a referral to a relevant specialist. Good luck.

Frazzled2207 · 18/03/2021 10:04

sorry to hear of the latest development. I think you're going to have to be an annoying pushy parent. I've seen very helpful registrars before so don't dismiss him/her but try and big up your concerns as much as you can. Hope you make progress soon

trickyex · 18/03/2021 10:05

@HunkyPunk thanks for pointing that out, yes I did indeed mean Healthunlocked.com

Frazzled2207 · 18/03/2021 10:06

@littlefireseverywhere

Sorry, just read about the consultant, maybe worth calling their secretary and explaning change in symptoms. There may be a nearer appointment / cancellation?

I think this is worth a shot. Even if they can't do anything immediately they might think of you if there is a cancellation. There's probably quite a lot of covid-related cancellations these days.

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