Advice/support/experience needed four year old collapsed and in hospital overnight.

[flippyfloppy]

Hi there, I'm feeling a bit shell shocked at the moment, bear with me it's a long post!

We had a seemingly "normal" day with DD yesterday we were playing in living room when I left the room to walk into the kitchen. WIthin a few seconds of me being in kitchen I heard DD sobbing she came into kitchen, kind of staggering, clutching at chest, I asked her what was wrong, if she had banged it or bumped into something and she was just starting to cry, I picked her up and she collapsed in my arms. SHe was unconscious for about ten seconds, lips went blue, face whiter than white, I was hysterical shouting for DH to call ambulance. When she came round she went hysterical then calmed down, they wouldn't send an ambulance because she had come round so we went striaght to A&E in car where she was drifiting in and out of consciousness. When we got there she was coming round and seemed to be getting "better". She was in hospital overnight, stats all fine, two ECG's normal, and they have not been able to say what it was or why. SHe has been referred to a cardiac paediatrician in a months time and a seizure clinic outpatients but I just can't get my head around this happening to a seemingly healthy four year old . They said I may never find out why this happened but I can't accept that. The image of her in my arms with blue lips is haunting me and I am worried sick about it happening again.

In hindsight she was more clingy yesterday and said a couple of times she wanted to be on her own ?!? not like her, she was a but hot from playing in garden but no temperature. Should I be pushing for more investigations. Anyone have any experience or ideas as to what it could be.

She seems fine today, unlike her parents.

Fuckwitty - yes we are cosleeping I don't think I would get any sleep any other way.

And yes I will report back, the form said they will respond within 25 days.

I called an ambulance for DD2 when she had her first anoxic seizure - I thought she was dead and she was actively fitting while I was on the phone. They sent an ambulance.

But there isn't always an emergency ambulance available and it may be the operator thought it quicker to get to A&E by car rather than wait for an ambulance.

The ambulance call takers don't make decisions, the computer does it for them as a result of the answers to questions the call taker has to ask for you. They cant override the computer system although there are normally people in the control room who can (paramedics or nurses). So dont blame the call taker but do balme the system. I am very surprised an episode of unresponsiveness in a child didn't get an ambulance - if your child had had a fit then come round you'd have got a high priority response. Definitely ask for an explanation of the specific criteria used in your case to make the decision not to send an ambulance. All calls are recorded so they have the evidence.

Hope dd is all fine and it was just one of those mysterious childhood things sent to give us grey hairs.

Hi there just to update you re:ambulance situation. I emailed the complaints dept last night and I had a call this afternoon from the department to say there would be a full clinical investigation and a report sent out by the chief commissioner? She asked me if I had anything to add to my email and seemed pretty sympathetic. Seemed a pretty good service for a complaints dept, not sure if that is normal practice?

Sounds about right. Everything is recorded and investigated and then fed back to see how the service can improve.

Hi DD seems her normal self, you wouldnt know anything had happened and I've got appt with GP Friday morning.

You said before DD collapsed she was crying and holding her chest, having spoken to her since do you know if she hurt herself or got a fright before it happened?

When I was young I used to do a similar thing to which you described if ever I was ill, or in pain or had a shock etc. I would go totally white, blue lips, pass out, then wake up want to sleep and be a bit off for a few hours, then completely fine as if nothing had happened.

The first time I was about 4/5 fell and got glass in my knee, I've had it all of my life but I know how to see it coming now and get myself in a position that I can stop myself from actually passing out. It is like my body starts to shut down as it can't cope with pain.

Have a look at this here although it is not epilepsy, but this is the closest to what I have, although I have nothing diagnosed, I think this is what I have, as no cause has ever been found.

I should add that it is nothing serious and I am completely healthy, but your description of your DD just reminded you so much of what happens to me, especially when I was young.

Yes this is what DD2,has. They are very common, the neurologist we saw said he sees one a week.

Sorry, I missed you saying that About, I have scared quite a few people with it in my time, at one point I was doing it regularly I actually started to enjoy the feeling

Yes we used to freak people out at toddler group when DD2 keeled over in response to another toddler stepping on her foot.

It's funny that they're common yet not many people know about them.

I can imagine! When I first started my period I would do it every time I got period pain, my friends were always carrying me home or dragging me on a bus!

I am surprised by how common they are as I have never met anyone else that does it. From about 13 I learned to catch myself in time and "control" it.

Weird science- think dd has blocked it out , she says she can't remember anything about it when I ask her things now. Doctors did say her interpretation of pain is different from ours, so may have been
a different sensation she felt? She had slipped and bumped her knee an hour before this happened, just a bruise, I thought nothing of it but do you think this could maybe be related? I did mention it in hospital but they seemed unconcerned and didn't link it .

I don't understand how there can be no danger to her though if effectively she had stopped breathing and there was no oxygen? Is there not a chance she would not restart breathing? X

Aboutlastnight - DD didn't "fit" more just collapsed?? Does your daughter get the blue lips and grey skin when she has one of these attacks? How did you get diagnosed? X

The first time it happened she had a seizure do was actively fitting when I dialled 999.

Second time and ever since, it was more like a fainting episode: her eyes roll back, she gets very pale and she is ' out' for maybe 30 secs. Then she comes round and needs to sleep for a while.

A&E thought anoxic seizure and this was confirmed when we were referred to a neurologist who ran an ECG to check for heart problems. Apparently the heart momentarily stops. DD all clear thank God.

DD2 is very small, clever and sensitive to noise, temp and light, food textures etc. As one of three though she just has to get on with things but she is definitely one of life's more fragile types. I was warned she will be prone to fainting, may react if jumping into cold water.

Your DD may have something completely different but I found the chat with the neurologist was very helpful and reassuring.

Good luck at your appt.

I have never had any fitting either, always just pure white, blue lips and out cold. Have done it a few times in medical environments too, and no one has ever mentioned fitting or been in the least concerned.

I am wondering if the fact she was holding her chest when you found her if she had bumped herself or got a fright and just can't remember it now, or has blocked it out/doesn't want to talk about it.

Was she a bit clammy/sweaty when she came round?

Thanks both again for replies. No she wasn't hot or clammy when she came round I would say just normal temp.

Interesting what you say about DD temperament. My DD is a sensitive sole, to noise she hates hand dryers! and also to other peoples feelings. And if she ever bumps or cuts herself she covers it up with hand she can't bear to look at it!

I guess all we can do is wait until referral appointments.

Thanks again.

Hi flippyfloppy just came back to see how your DD was.... glad there have been no more of whatever they are.

interesting about the anoxic seizures; DD did the eyes roll back and go limp and floppy thing a couple of times as a toddler after a bump to the head; I had a couple of very panicked dashes to A&E (by the time we got there she was always perfectly cheerful and I felt silly) I wonder if it was something like that? No jerking of limbs though

Anyway I hope your DD carries on being fine, the ambulance people duly apologise, and the referral appointments go well.

Hi there, just wanted to post an update for everyone who commented on my post last month and picked up on the refusal to send an ambulance. I have received a four page letter from the complaints service at north east ambulance service today. They have expressed sincere apologies and admitted their service was not acceptable. They have said the call operator did not follow the correct procedure and he should have referred call to the onsite clinician. They have also said that the investigation will have wider implications as it has brought to their attention to the fact the 'pathways' triage system does not provide a 'route' for a four year old who collapses with chest pain. This explains to me the lack of response and interaction I had from the operator, although slightly worrying! I am relieved at the outcome it will hopefully allow me to try and put a bit of closure on that episode as it still plays on my mind ( the fact we couldn't get an ambulance) I'd like to thank people for the encouragement i received on this thread to send a letter.

DD has one appointment on the 7th August at seizure clinic and we are still waiting for a date for the cardiac referral. She developed a chest and throat infection 7 days after the collapse and a raging temp, I wonder if it was related? Other than that she is fit and well and you would never know it had happened.

x