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!

apologies OP I posted and the thread had moved on.

I hope you & Dd are managing whilst you wait to see a specialist. x

I think definitely push for a pead rheumatologist specialist appt if possible. My Dd is 19yo so now gets seen by normal adult services which to be honest I’m thankful for....I do worry how a paediatrician can have enough knowledge about everything to do with kids.

Dd has multiple auto immune conditions, it’s not uncommon to have more than one. Which i think sometimes is why a diagnosis is so hard. As someone mentioned previously a negative ANA does not mean she doesn’t have lupus. And if the GP/paed doesn’t know that she needs a better doctor.

Some possibilities I’d be wanting investigated would be simple stuff like vit d and coeliac. Also POTS, lupus, RA, functional neurological disorder. Good luck.

I agree you need to see a Paediatric Rheumatologist. I also agree to consider Lymes, it took a long time for a friend’s dd to get a diagnosis, years in fact.

oh that sounds a bit disappointing leaving it all unresolved like that.

treatments and exercise routines are completely different for different things. I have something that needs work to prevent deconditioning, but for other things this would make it worse.

hoping that you get to see a specialist soon.

Blood tests are also used to exclude a diagnosis (not just to confirm one).

So bascially the GP thought he knew what was wrong, but the blood test results told him his suspected diagnosis was incorrect.

For example he might have suspected anemia but if the blood tests showed a normal Hgb level that would exclude anemia as the cause.

He doesn't know what it is so has referred to a consultant—that's good.

@Froppysue

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.

A registrar is also a specialist and he/she will be attached to a consultant.

Registrar is well experienced don't worry, second in command so to speak but overseen by the consultant

A registrar will have completed 5 or 6 years of medical school and 2 or 3 years as a foundation doctor. They then do something like 6 years as a registrar and may be about to become a consultant. So it isnt like they know nothing. They do the information gathering then depending on their level of experience and their consultant may present to the consultant for advice or arrange a load of tests and get your daughter back when the results are in.

Your consultant may sometimes call a colleague in for advice too.

I dont know what could be wrong with your daughter but cfs/ME should be a diagnosis of last resort when everything else has been ruled out. There is research showing that quite a significant proportion of people given that diagnosis have treatable medical conditions. Fainting is not generally serious but you should look up POTS. www.nhs.uk/conditions/postural-tachycardia-syndrome/

Thank you all so much, didn’t sleep a wink kept having to check on her.

I’m think the registrar is attached to the consultant we saw last time, thanks for the clarification I was worried we’d have to start everything from the beginning again.
I’m definitely going to do some research of my own and look into things and have a lot of questions written down.
I do think a rheumatologist needs to see dd too. I think right now they’re trying to rule everything out, but I agree with above (sorry I can’t tag any posts for some reason) that the cfs should really be a last resort. We do have a lot of autoimmune diseases in the family so I’ll make sure to let them know of all that too.

I might try and post some pictures later. Dd always gets a malar rash, she does get other rashes, most recently she’s had a sore rash at the back of her neck/hairline, she’s had swollen eyes, mouth ulcers... all this together seems to stump the doctors and make me feel like I’m just moaning about everything - there has to be a link between it all though surely, I feel so bad this is actually stopping her do normal things now, she doesn’t even want to go for a walk sometimes as she says she can’t stand how ill and tired she feels afterwards.

Someone mentions pots, the paramedics checked her blood pressure as she stood up too and all seemed to be ok there.

OP I would be worried too and just really hope the docs get on the ball.

I had a similar period in my late teens - no rashes or anything but had some incidences of not physically being able to get out of bed and also collapsing/fainting a few times. The bad news is hospitals never got to the bottom of it. The good news is I grew out of whatever it was. Been fine now for nearly 20 years.

The mouth ulcers and swollen joints jumped out at me as symptoms of Behçet's disease, which an autoimmune condition A friend has it

Have they looked for Coeliac disease?

I get a lot of mouth ulcers when my iron levels drop. It may not be relevant at all but I thought it may be worth mentioning.

I hope you get a diagnosis soon

"she doesn’t even want to go for a walk sometimes as she says she can’t stand how ill and tired she feels afterwards."

Poor thing.

So sorry OP that DD is feeling so bad.

I have no expert opinion to add here but do have much experience of odd symptoms that disappear when a doctor appears! You've mentioned quite a lot of rashes as well as bulging eyes etc. It might be handy to take photos of everything. Obviously DD isn't suddenly improving but if there are different things that come and go, I have found it is extra helpful to be able to show the drs. It also changes how I interact with them, because if sometimes had the feeling they think I'm an over sensitive mother. When I know I've got proof of everything on my phone, it helps me be more assertive - and it can be helpful for some doctors who want to see it.

I really hope you get answers quickly.

Thank you all. I do have lots of photos, I’m thinking of making a folder up with all symptoms, dates, diary and photos but dh thinks I’m nuts! I think it could be quite helpful. I definitely need to be more assertive. I’m getting more and more worried about her.

I don’t think they’ve really checked for anything mentioned above, I’ll write things down and ask, I’m quite scared trying to Google too many things myself though as I don’t want to end up down a rabbit hole.

I know her iron was fine but except for that one blood test at the doctors nothing else has been checked for a few years. We have our appointment on the 29th.

If keeping a record helps you then do it; you have to get through this too and be the support your dd needs. It can give you confidence that you are managing it/doing something as it were in a time of uncertainty. Difficult if dd thinks you are being a pain so you may have to explain to her why it's important to you. Assume you have been in touch with other diagnosed family members and picked their brains. Best wishes.

Thank you all. I do have lots of photos, I’m thinking of making a folder up with all symptoms, dates, diary and photos but dh thinks I’m nuts! I think it could be quite helpful.

Of course this is helpful. Your DH is a complete dick if he thinks it’s not.

I think the folder is a great idea. It might help the Dr see that all her symptoms are linked, especially as you may not have a long appointment
Good luck and I really feel for your DD
She needs her "Zest for life" back, as do you

It can be really helpful to have a list of symptoms and dates, especially if matched with photos. Rashes are hard to diagnose and a photo definitely helps then. You could even make a recording if something sounds off.

I don't want to be overly dramatic but the way you described your daughter is a lot how one of my sons were. He has ehlers-danlos syndrome (both of my sons do) and the when you said about her not wanting to walk because it was too much, it reminded me of my son after having fun playing with his friends and then he'd be weak and exhausted for days afterwards, and one time he said to me, sometimes it's not worth having a good time. Anyways I don't know if you are familiar with ehlers-danlos syndrome? I saw some people mentioned lupus which wouldn't surprise me because of the symptoms and butterfly rash you mention. Very similar symptoms my son was tested for Lupus first before both sons had biopsy for EDS. He has a blood disorder, then diagnosed with chronic fatigue syndrome when he was 12, and the EDS in his early 20's. Make sure that she is seen by rheumatologist it really sounds like something like that to me. (Just going by my experience with my own family, I have no medical training at all.)
And you can get mono again, I had it twice.
Hang in there, get answers.

I was wondering how your daughter is? I hope things are better x