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Baby with Vacant Episodes(27 Posts)
Just after a little reassurance. My beautiful 5 month old DD has started over the last 48 hours have periods of being vacant/ not engaging. These last about 20 to 30 secs and nothing seems to break it. When she comes round she is very tired and seems a little disoriented. She has been sleeping more than usual but other than this everything else with her is fine. She has seen the GP this morning and he has done an urgent neurological referral and used the words epilepsy. If anything changes he wants us to take her to A & E. Does anyone have any experience of this in their children? What could this mean long term?
I am a bit of a mess over it all to be honest and my mind is racing 100 to the dozen of all the things that could be wrong. Many thanks in advance for your help/comments x
Sorry you're so wprried but i'm glad youre gp is taking it seriously. It cpuld be a range of things from nothing to epilepsy, but even if she is having absent seizures, theres amazing treatments they can give for children to stop them and many people live with epilepsy with very few problems because of treatment.
If you could video a vacant episode that would prob be very helpful for the neurologist and any time she has them keep a note of when and if you can exactly how long they last. Hope your appointment comes soon but try to remember that for every scary thing you read on the internet theres a story of a kid with similar who was fine!
Thank you for your response. Yes I am trying to video and keeping a log of the timings. She has had 4 episodes so far this morning - so keeping a close eye and hoping that the appointment is soon. Trying to keep it is perspective - she is such a delightful baby just want her to be back to her happy smiley self.
Could they be absence seizures? This is a form of childhood epilepsy where the child "switches off" for ten seconds or so, but doesn't fall over or have a convulsion. In older children, they would stop walking or talking during the seizure, but not fall over, and in fact you might not even notice that anything had happened. With a baby, she won't be walking or talking yet so it's harder to distinguish.
Anyway, if it is absence seizures, they are not harmful and the child usually grows out of them during adolescence (although they may be at higher risk of developing another form of epilepsy in adulthood, but many do not).
Yes they could be absence seizures. Just concerned at how quickly they have started and the effect they seem to be having on her. She was a shouty happy little thing until the weekend and now is very tired and grizzly. Doctor said is could be something of nothing but neurologist will know more. She has now had about 6/7 episodes today - just not sure at what point we escalate. Maybe see what tomorrow brings. Thanks for your comments.
My DD started having similar episodes, but with spasmy jerks, around the same age. I took her to A&E, as a friend had alerted me to the possibility of infantile spasms, which need urgent treatment. Not all GPS are very clued up on the condition.
If I were you, I’d take your DD to A&E, where they’ll admit her if they’re concerned and do EEGs ASAP and begin treatment immediately if something shows up.
If you can, video your DD having the episodes and coming round - the hospital doctors find this very helpful.
I hope it turns out just to be “one of those things”, but if it is infantile spasms (also known as West syndrome) she needs to be seen and start treatment ASAP. My DD responded really well to the treatment and, at nearly 4, hadn’t had any form of epilepsy since. Best of luck, OP!
OP, absence seizures and focal onset aware seizures can look quite similar but focal onset seizures are a bit more serious. The fact that your DD is tired afterwards makes me wonder. Have a look at these pages from the Epilepsy Foundation.
I would second the PP's advice to go to A&E if the seizures are ongoing. GPs often aren't that clued up at all about epilepsy, and in A&E they will investigate straight away.
I don't like the sound of this. No problems at all to multiple zoning out episodes in such a short period? In a 5 month old? They need to see paediatrics now, not be waiting for an "urgent" neurology opinion, that could take months. I would heartily recommend going to either A&E or out of hours GP, and begging them to ring paeds. And any paediatrician who would not accept them to the ward to start trying to work out what's going on from right now would be an idiot.
This does not mean that it is serious. It means that some of the unlikely possibilities are serious, and need sorting promptly. Not waiting for an appointment.
Get the fuck to hospital.
If she's become very grizzly and unlike herself, then I think it's less likely to be absence seizures. In AS, children generally carry on as if nothing has happened. Whatever is causing these episodes with your DD seems to be bothering her and I think PPs who suggested A&E are right, to be safe. Good luck OP. Hopefully it will be a temporary reaction to a virus or something, but best to make sure.
Thank you for all your responses. The GP called again last night having been thinking about our DD all day and taking it upon himself to calm the hospital. They have suggested the possibility of some underlying infection and we are back there this morning for some tests. Hoping this is the case and will get some answers. Thanks again for all your messages.
I hope they can reassure you. Is she still having episodes?
That sounds good, OP. I hope they’re able to get to the bottom of things quickly.
So it would appear she has an urine infection - it was fun trying to catch a wee! He said this could well explain it and the paediatrician at the hospital had suggested this could be the case. She has been put on antibiotics, with the urgent referral as back up (letter has been sent to hospital) and fingers crossed we should see an improvement in 24 to 48 hours. In his eyes absence seizures are falling further down the list and he is hopeful. Yes she has been having some episodes today but seems a bit happier in herself. Watching her like a hawk so if anything changes we will have her at a & e or back at the Docs. Thanks for your comments x
UTIs are nasty buggers. I really hope the antibiotics knock this on the head and give you your cheery baby back.
Oh good, so glad there's a possible cause that's easily treated! I hope she's back to her usual happy self very soon and the absences stop.
How is your baby today, OP? I hope she's better.
I was really worried when you said at 13:08 that she'd had four episodes but at 15:08 she'd had six or seven, so she must have had a couple within two hours. I hope it is just the UTI and that she's better soon.
Thanks again for your messages. She does seem a lot brighter in herself and the episodes appear to have reduced in number and intensity - only 4/5 yesterday over the whole day whilst I think on Wednesday she got to about 11. They do seem to coincide with her weeing or just having had her nappy changed. We are expecting the results of the urine tests next week so hopefully that will show some more infection causing it all. The GP has done the referral as well so we have this as back up. Thanks again for your comments.
I would consider asking for a scan of her kidneys, bladder etc too. Its good practice if they get a urine infection so young. Might be some underlying issues with her urine system which have caused it.
To all you lovely people who commented I thought I would update you. I managed to get DD a cancellation appointment with the pediatrician this afternoon at our local hospital. Luckily (if you can call it that) she had an episode in front of the doctor and we have been admitted for further testing including an EEG first thing tomorrow. To say I am worried sick and anxious is an understatement but we are in the right place and hope we finally get an answer and a plan. Thank you again for the support and comments.
Good thing you're in hospital and having the tests tomorrow. Breathe. One day at a time. I hope it all goes well. xxx
Gosh what a worry. My first thought on reading OP was infantile spasm but sounds like that has been ruled out.
Hand holding as you go through this journey.
My ds is 13 and has odd episodes. We are lucky epilepsy has been ruled out - doesn't explain what they are though!
How awful! But good you’ve been admitted - a crap night on the children’s ward will definitely be worth it if you can get to the bottom of what’s happening. Hope she’s ok
Hope,you get some answers tomorrow, you're in the best place
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