3yr old DD - blue lips, 'vacant' phases, nose bleeds - what's wrong with her?!

[StarUtopia]

Ok. So me and the Doctor are both flummoxed.

After being referred about a year ago (aged 2/5) because I was worried she was tired, had no energy, just seemed listless at times..

Loads of bloods run etc. They decided it was low iron causing problem, so whacked on iron supplement. This didn't fix the problem so another 3 month course was prescribed.

In the meantime, she has now had x3 episodes of just going weird, vacant, staring into thin air, then the colour drains from her face, her lips go blue (and I mean blue) and she nearly passes out.

She's also had quite a lot of nosebleeds.

Iron levels have come back normal on latest bloods.

Any ideas?? I just have a feeling something isn't quite right, but all the blood tests run so far aren't pointing to anything. She definitely lacks energy compared to her 2 yr old brother and even her CM described her as a bit 'spacey' at times.

Which medical specialists were seen by your daughter? Were they thinking more along cardiac or neurological? I would be pushing for more investigation.

Surely she's been referred to someone else? What tests have been done?

I'd wonder about some sort of blood pressure thing? Or blood sugar levels?
The nosebleeds alone wouldn't concern me-my Ds is a similar age and also has loads.

She was referred to the paed at the hospital over a year ago. To be fair, I feel he's been fairly useless. :/

We have a new doctor at our surgery who is fab, so I've discussed this twice with him now and he was the one who sent for bloods to be redone this week.

He did think it could be something to do with some major nerve (can't remember the name) that can cause you to pass out if you're under extreme stress etc....but all the times it's happened, there's been no real reason for it (that is obvious)

I'm just after any ideas. I 'm starting to feel a bit daft saying I have a feeling something is wrong, when all the bloods are pointing to a healthy child.

I'm going back to the doc with her tomorrow to discuss bloods, but the receptionist already rang today to say everything is normal.

They've done glucose tests and diabetes, and then just a standard blood check (iron levels etc)

yep back to gp.
have they listened to her chest at all?
blue lips white face could mean heart problems.
have they ruled out seizures/epilepsy?
how is she otherwise? growing well? lerning age appropriate?

Vacant, colour draining from face, point of passing out sound like my seizures!

when you see doc tomorrow, let them give you a printout of the results. 'normal' is very general. might not be ideal.

milk what happens in your seizures?

No, they haven't mentioned that even yet.

Paed listened to her chest last year, but not recently. She is due to go back in August though for a check.

She's a bright little girl. 100cm tall, so fairly normal height for age and normal weight.

Have the doctors seen one of these episodes? Could you film it on your phone next time? It sometimes helps. Definitely keep at them for answers, it sounds pretty awful for you both and I'd be on their case constantly in your position.

Dunno Star - I'm usually actually unconscious at that point! Then I just kind of snap out of it, bit disoriented for a few minutes and then back to normal.

Or I have a major collapse but that's a whole different ballgame!

Gin No. The last time it happened was two weeks ago on holiday on a beach! Luckily my Mum was there, and it's the first time she's seen it...and straight away she was, omg that's not right. Get her looked at.

But it's been a cock up since day one. First went to the docs about this 18 months ago. Took 6 months to get first paed appt and then she got 'lost' again in the system. So it's been a lot of faffing about. As I said, paed just put it all down to low iron levels, probably not eating properly etc, maybe just a slower child than DS...She just seems to have no energy at times. She's now talking obviously a lot more, and says she hates going to gymnastics because it makes her exhausted afterwards. Obviously. she's 3.5 and a normal healthy size (so not overweight or anything). She should be able to run around all day at that age surely?! (my son never bloody stops in comparison)

blue yes will ask for a print out good idea thank you

milk Do they know what causes it? Have you had it since being a child? She hasn't actually gone unconscious but is definitely not all there (if that makes sense) Then snaps out of it. Then she's exhausted and just wants to sleep.

Blood tests alone can't diagnose everything. You're going to have to be on the front foot to get to the bottom of this. At this point I would be asking to see a neurologist & having an EEG done just in case.

you are right.
she should be bouncy, alert, active all day (apart from short breaks) at that age.

I think that sounds like absence seizures as well.

I would definitely ask for a review to rule out neurological causes of seizures.

I'd also keep a diary of when she has these episodes.

I developed it as a teenager. And I don't actually look unconscious, but I'm definitely not there at all. Yes, yes, yes to the exhaustion.

Does sound like seizures with the tiredness afterwards. I'd be pressing for more tests-eeg/ mri etc?

Some possible causes I would want ruled out are listed here: www.nlm.nih.gov/medlineplus/ency/article/001104.htm

I would ask your new GP for a referral to a different paed. And ask about a neurologist

Thanks everyone.

The vacant 'day dreaming' sounds very much like abscence seizures. Year are most dangerous whilst crossing roads etc as the body continues doing what it was doing before but the consciousness isn't there. The person often 'wakes up' not knowing anything has happened but realizes as people have moved etc.

A student I used to work with had blue lips, nearly passing out and frequent nosebleeds - Unhelpfully I can't remember what the condition was called but they were definetly the symptoms so you aren't imagining it.

Eeg and ecg might be a good idea at this point!