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.

Have you filmed her with your phone having one of the episodes?

Would it help to show the doctor what happens and the blue lips etc?

No. I've not had my phone on me annoyingly and to be honest, they're over quite quickly (30secs-1 minute max I would say)

As pp said Any video would be really helpful for the dr to see. also you may well of already done this but make a note of anything the precedes food playing with a toy anything sometimes it's the strangest detail that can be the one that helps find the problem. Hope you get some answers

The first time it happened, a friend was putting a glitter tattoo on her. I thought (at the time) she was associating it with having her blood taken (which she hates) and got extremely stressed (although you couldn't really tell that she was)

The other times there has been no noticeable reason for it. Not hungry, or thirsty, not too hot or too cold, not in danger/stress etc.

Her lips are literally vibrant blue. No mistaking it. She looks like an extra from Avatar!

I am also thinking absence seizures or epilepsy, the good news is that most children that have them grow out of them and/or they can be controlled with medication. they are also more common in girls, I don't know why. It may be that the nosebleeds aren't really related, but the spacey periods are very typical:

www.aboutkidshealth.ca/en/resourcecentres/epilepsy/understandingepilepsydiagnosis/typesofseizures/pages/absence-seizures.aspx

I came on to say absence seizures too. These would leave her tired afterwards and she may be having more which aren't noticed

Oops pressed enter too soon..push for second opinions, I finally got to a gp who took my concerns seriously and refered urgently

My daughter is 4 in September and she's done something similar but only twice and not for at least a year now. Both after mega tantrums she would then go stiff, stop breathing, pass out, blue lips, can't me back round after about 10 seconds (seems like 10 hours) then be fine after half hour or so. She's never had a massive issue with fatigue though, mardy when tired but not especially exhausted. Keep pressing the docs but I wouldn't be surprised if you get the old "she'll grow out of it" which is okay for them to say when it's not their child/ them witnessing these awful episodes

Please push for further investigation. It sounds like some type of absent seizure so I'd be asking for an MRI to see if they can see a cause for it. Mothers instinct is so important. Some Dr's know that and listen but not all of them do.

When I was worried about my daughter (also 3.5) I went to the GP, told him the symptoms and explained I felt uneasy, he referred her for a brain MRI. Thankfully it didn't show up anything sinister, just some small amount damage to her brain from her rocky start to life. I hope you get to the bottom of what's going on and it's something she grows out of!

I've got to wait til Tuesday now for seeing the doc.

She's gone all 'absent' again today on the way back from dance class. I read somewhere that if they're daydreaming and you touch their arm, they'll react. If it's not that, they won't. She totally didn't react.

She has started saying (in the last few weeks) that she feels 'seasick' in her tummy at times and that her tummy is all 'hot'..and obviously that she's sooo sooo soo tired too!

It is really just mother's instinct at the minute, but luckily this new doc is very good and does listen. So will take some concerns/ideas with me next week.

Dd has mild absence epilepsy which showed up on eeg then she had an mri to rule out anything more sinister. She also gets nose bleeds but they're not related in her case - all my dc get nose bleeds when they're having growth spurts.

Sound like my son were waiting to go for an eeg as they think he's having seizures as daft as this sounds could you possibly video these episodes that's what we had to do x

YY to videoing dd if you can. And making notes each time it happens - when, where, what dd was doing at the time. This is what dd has been asked to do with dgd, by the doctor who saw during an overnight observation after a trip to A&E. Her bloods have came back fine but they are going to do an eeg and then refer on to neurologist.

I think a paediatric neurologist should check your dd out.

There are a few different types of epilepsy. Temporal lobe and flashing-light-triggered both have the type of symptoms you describe. But it could be cardio. Or anything! It's not normal so insist on more tests. If it is some type of epilepsy they are incredibly tired, even sleepy, after an 'episode ' however brief.