Are your children’s vaccines up to date?

Set a reminder

Please or to access all these features

Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Back in hospital, looks like a seizure

11 replies

courgetteDOTcom · 21/02/2013 23:01

My baby, born 29 weeks before Christmas, had been home less than a week when after a feed on sunday, I noticed him go stiff and my arm turn wet. I. looked down at him and his back was arched, his body stiff, he was dark red, looked shocked, drooling and not breathing. I shouted his name a couple of times which caused my husband to come over and take him from me. He quickly started breathing again without any help. at that moment my flat intercom went so I grabbed him and ran to the entrance to my mum. The staff called an ambulance and we've been here since.

first night doctor said it's reflux and if he wasn't a still preterm baby he'd be sending him home. next day the doctor on the ward isn't so convinced, he would have had milk, not be drooling if it was reflux but otoh his heartrate goes up and his O2 down when he's on his back and given his prematurity it's probably a good idea to start him on gaviscon and ranitidine.

he's had a chesi xray and ecg which looked normal but the eeg didn't. I suspected something when the guy drew a wave, left the room and then a lady looked through the window at his computer and when he came back he said "10 more minutes" after already saying that ten mini before... they've not. given any answers yet as they wanted a US and CTG first. US was today and CTG first thing. I'm expecting it to be Saturday at the earliest he's let out.

about two weeks before he was let out of NNU he had what sounds like the same thing. it really shook up the staff, which seemed odd, if it was just an arrest I'd have thought they'd be usedto it. I wasn't there at the time and obviously they weren't there the second time so we can't be sure it was the same.

it's like some nightmare scene in a film with a CGI baby or something, he was fine so quickly I wasn't sure it was real but it keeps coming back to me.

I could do with some sympathy/ empathy/ advice/ anything Sad

OP posts:
Are your children’s vaccines up to date?
courgetteDOTcom · 21/02/2013 23:03

apologies for my awful typing, I'm on my phone and it doesn't capitalise anything other than I or known abbreviation and the keyboard covers the text box.

OP posts:
DancingInTheMoonlight · 21/02/2013 23:06

So sorry you are going through this. I can't relate to having a premature baby but my ds does suffer from many febrile convulsions. Its very scary to see at first and it sites take time to get over the shock. You are in the best place at the moment and its good they are completing further tests. Try and get a much sleep a you can and remember to eat and accept offers of help from family and friends. Hope your little ds gets well soon x

PirateHat · 21/02/2013 23:09

Sorry this is happening to you. My ds had a febrile convulsion today, nowhere near as bad as what is happening to you but I know what you mean about it coming back to you.

Make sure you look after yourself, it's tough when they are in hospital. Keep pushing if you feel there is something that is not right with him, you know him best.

DoctorAnge · 21/02/2013 23:11

I don't think I ever got over DDs FC at 1 year old. Its extremely frightening and traumatic.

courgetteDOTcom · 22/02/2013 00:15

sleep is broken becauseI'm breastfeedingand he seems to be feeding constantly and of course not easy for others to take a turn. my husband has offered to do Friday night but I said I'd rather just do it and sleep all weekend. I'm also on a chair that reclines as far back as you lean. hospital wipe clean and impossible to make as a bed without lying on it!

I'm getting some food because the hospital give me toast most mornings (most children's wards I've been on feed bfing mothers...) someone usually brings me a sandwich or relieves me to get one and I pop out after an evening feed to a local JD.

I forgot, I think they know what's wrong already. at the US this morning I was asked. what it was for, started to explain when the nurse who took us got some paper out of her pocket and pointed, the lady doing it just said "oh right".

I said to my husband in a way I'd rather they find something than not knowif it could happen again, but I don't want to wish anything on him and I hate knowing we're only here waiting for appointments! I'm hoping they give us an apnea.monitor before we leave Sad it's funny, my fourth premature baby after losing one and I've always said it'd make me more anxious to have one or go on. CONI but this is easily the worst thing I've been through with any of them. I had PTSD after my first LC and this feels like the "films" my brain used to play.

OP posts:
DancingInTheMoonlight · 22/02/2013 06:58

un mumsnetty hug hopefully they are right and know what it is so they can give you a proper picture of what is going on. Ifind things a little easier to process and deal with if i know what I'm dealing with and can find out information. Although I'm not really, i feel a but more in control?

The constant feeding sounds good tho. Babies tend to feed more when they are repairing or over coming illness and i would see it as a sign he's a strong little man

Have they said when they plan to have a proper chat? Could you all to arrange a time to see the consultant?

Hope you have a good day today x

dikkertjedap · 22/02/2013 09:23

So sorry you have to go through this.

It is normal to feel very frightened, because it is a very frightening experience not knowing what is going on.

At least he is in good hands and they can respond straight away if he needs extra help. I hope they find out what is wrong so it can be treated.

I hope that somebody is with you to keep you company. If you are unsure what is going on or what the medical staff are doing, do ask questions, don't necessarily wait until they tell you something. It may help to write things down when doctors/nurses tell you what is happening.

Sending you lots of strength.

courgetteDOTcom · 24/02/2013 15:06

we got home Friday night. they've been very vague about things. he has this abnormal wave but they can't say for sure it was a seizure or the first one or if it'll happen again... but of course I shouldn't worry Hmm the nurse said to talk to hv on Monday about CONI, I could have done it with my others because I lost my first but I thought I'd just have something to worry about but now I'm worried without.

we've also got the added worry that when he lies on his back his sats go down and heartrate goes up but the hospital stressed the importance of putting him on his back!

I found out from his paperwork he has HIE. so probably is at risk of more seizures as well as cerebral palsy but it's a wait and see.

OP posts:
courgetteDOTcom · 24/02/2013 15:11

and thank you everyone for your kind comments. the hospital have felt quite dismissive, they expect me to think like a doctor not a mum so it's nice to have support from MN.

oh and we didn't leave without sparking a major incident Shock obviously can't go into details too much but the ward manager probably wasn't wanting something this big dropped on her late Friday night!

OP posts:
lisad123everybodydancenow · 24/02/2013 15:15

This reply has been deleted

Message withdrawn at poster's request.

DancingInTheMoonlight · 24/02/2013 17:55

Have you considered contacting PALS and saying how unhappy you were about the information (our lack of) you were given. Hope you are settled at gone and trying to relax x

New posts on this thread. Refresh page
Swipe left for the next trending thread