Toddler losing consciousness

[Wingingitwinger]

Hi,

My 3 year old has had three episodes of losing consciousness, each around 6 months apart.

In these seizures, she goes blue, makes grunting noises struggling for breathe,
and goes floppy. She hasn't lost control of her bladder or bowels during them, and she hasn't gone stiff or shaky. They last for 10 minutes or so, and then she is very pale and lethargic for an hour or so afterwards.

We have been to hospital each time, and she's now under a consultant but ultimately they don't know what is causing this. EEG and ECG were normal and she has had a lot of bloods done. In the absence of another diagnosis, the consultant originally thought RAS seizures, but the most recent episode was not precluded by any excitement/pain/shock whatsoever and even the seizures themselves don't particularly present as RAS.

I'm finding it so hard to cope with this. I feel sick when I leave her at nursery to go to work, I clutch my phone whenever I'm not with her, I'm terrified of it happening again.

I am posting here wondering if anyone might have experienced anything similar in their children and could give me any advice/potential causes?

Thanks

I can imagine how worried you are about this. Did she have a high temperature before convulsing? That isn't uncommon in small children, they are called febrile convulsions and they outgrow them.

Thanks for replying. Unfortunately not, she hasn't had a temperature or been at all under the weather on any of the occasions.

Two thoughts - Have they checked/ruled out any heart issues?

Also have they checked blood sugars -

Low blood sugars can be hard to pick up as once fed/treated etc but if low can cause seizures -

Ketotic hypoglycemia children mostly grow out of but can cause seizures if blood sugars go that low - then there are other conditions that appear like this - but worth thinking if these seizures were after a fast (morning without food or when unwell/sick or not eaten?)

Thank you for your reply. Interestingly, she does suffer from hypoglycemia which was picked up by the consultant when he ran the blood tests. That said though, every time she's lost consciousness the paramedics have taken her blood sugar levels and they've been normal (5.7 today).

The heart has appeared fine on every ECG she's had and she has also had a heart scan. The consultant has referred her for a 3 day ECG today, so may show more up.

Thanks again to you both for taking the time to reply.

What a worry for you op, I have no advice but I hope they get to the bottom of it all soon!

Thank you!

That is interesting re: the hypoglycemia- is she under a children's hospital/specialist - it is definitely something to pick up on again - not saying the paramedics are wrong but the machine could have been out a bit -

An accucare monitor is not expensive- you could try a few baseline first thing in the morning and post breakfast readings?

Or as consultant for 24hr glucose monitor- they fit it just under the skin -

See if there any other patterns - pre food & when unwell or sick -

Hope you get some answers soon -

No advice but hope they get to the bottom of it, best wishes x

I really don't know much about this, but your post reminded me that I once did a fundraiser for a charity called STARS which works for people with syncope and other types of similar things. Even if you don't have a diagnosis yet, I wonder if they might have any resources or support for helping you cope with it. www.heartrhythmalliance.org/stars/uk/

Thank you all.

We do have an accucheck but ill look into the 24hr glucose monitor and chat to the consultant tomorrow.

I have looked at STARS before when researching RAS seizures but I think you could be right that they might be able to offer advice about these episodes too. These don't seem to be common and the consultants all seem quite flummoxed so it could only take someone from STARS or potentially on here to say they've experienced something similar to help us.

It is just very miserable for us living in this fear and of course for her too.

My DD3.5 has been suffering from seizures like this since she was nine months old. At their peak she would have weeks where she would have clusters of 5 -10 or so in a day. They have definitely decreased in number and we are down to one every three or four months. It is frightening and we have ended up in a&e a few times too. Like your DD, the attacks don’t always follow pain/shock. She has even had a couple in the middle of the night. She doesn’t always go white after them, sometimes she is blue, sometimes she is floppy and sometimes stiff and then floppy.

When the seizures were at their peak I videoed a couple on my phone and our GP referred us to a consultant at Kings college hospital who diagnosed both RAS and breath holding attacks despite them not being textbook. DD’s bloods were also normal apart from being a bit anaemic.

I kept a diary when the seizures were happening frequently to try and identify triggers. The most common thing associated with DD’s attacks was not having eaten recently, so it’s interesting to read about the hypoglycaemia. Tiredness, stress, being out of her usual routine and also being in even general pain (from teething or a virus for example) also seemed to make attacks more likely, the week we moved house for example she had about 50. Weirdly she had one yesterday and I linked it to our routine being skewed as the clocks went forward.

The consultant was pretty relaxed about DD’s attacks and just said they should tail off by the time she is five!

I signed up to STARS a couple of years ago and there is some interesting information about RAS and other seizures - definitely worth a look.

Anyway, I know my post isn’t that helpful but I hope it makes you feel less alone. It is scary.

Hi, thank you for explaining about your daughter and im so sorry for what she (and you) have been through. I cant imagine how hard it must be/have been with her having so many. It does help to know we are not alone. Thank you x