Seizures or just twitchy baby?

[Balloo123]

Hi all,

My 11 week old baby has been doing a range of odd things. When feeding she will involuntarily twitch her head off the bottle and then after start crying, also twitchy hands and legs. After feeding when she has fallen asleep I will put her down and she opens her eyes they roll around and she brings her legs up to her chest several times along with head to the side movements before falling into a deap sleep. When sleeping she does a lot flailing around, facial expressions and eye rolling sometimes sleeping with her eyes completely open. The other Day we ended up in a and e because she fell asleep with her eyes wide open on the bottle and I couldn't rouse her easily, she was also twitching and eye rolling and sucking thin air, this went on for at least half a minute. She was tested for viruses and had an MRI scan and blood tests which were normal and so we were discharged. I have a follow up appointment with the pedeatrician but it's not for over a month. I showed a video of my babies weird behaviour to my gp and she just said it's difficult to tell, could be a seizure or could just be an immature nervous system. Basically said I need to see the experts. Some things I have observed are the limbs can be gently pushed down but doesn't stop twitches in other parts of her body, for example if I hold her legs down she still moves her head to the side pokes out her tongue and rolls her eyes. Often she will take a dummy off me whilst carrying out these weird clusters of movements. She has quite bad reflux including coughing and wheezing and choking on bottles. She eats a lot 7 x 6 ounce bottles a day, possibly comfort feeding. Other than that she reaching developmental milestones smiling occossonally and can just about lift her head. I'm really hoping that the twitching is either her nervous system or reflux related. Just wondered if anyone had any advice on how to rule out or confirm seizures, whilst I try and get my appointment moved forward.

Also forgot to mention that she plucks at her clothes which I know is a sign of seizures in adults but is this normal in babies?

Ah you poor thing. I looked into this as I was on anti seizure meds throughout my last pregnancy and there's a small risk that epilepsy is hereditary (at least the form I have).

I'm not an expert but I was told that the thing to watch out for is eyes rolling into the back of the head. You're right, it's hard to know what's normal with a baby and what's not, but that eye rolling is not normal in a baby unless it's right before falling asleep.

I would keep a video diary and stick at it with the medical advice. Ultimately, there's not a lot you can do at this stage (given the timing of the next appt) except be very vigilant. The first sign of something looking more notably like a seizure, I'd whip her round to a&e.

Good luck. Really hope it all goes well.

No advice except I had exactly the same thing with DD, at 8 days old we rushed her into a&e convinced she had had a seizure. She had eyes rolling, involuntary facial twitching, her tongue darted in and out like a lizard, she did this for the first few months, while in hospital she had bloods, a lumbar puncture and a head ultrasound, none of which pinpointed seizures. She also developed silent reflux, which we concluded was the cause of the eye rolling etc... She's six months now and has grown out of it thankfully. It was horrible to watch though 😞

Thanks for your advice, im glad to hear your little one is no longer having these episodes. My baby is always sticking her tongue in and out like lizard. I was told by another mum that this is due to acid coming back up from reflux, I hadn't really connected it to her twitching behaviour, although she does sometimes stick her tongue out and keeps it out when these episodes are happening.

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Infantile seizures are incredibly difficult to identify
The baby in this video lifts her arms but lifting or curling of the legs can be signs too

GPs etc often miss this because it looks a lot like the startle reflex or is similar to babies with reflux

If you are at all worried then I would go back to your gp and ask them to upgrade to an urgent appointment

We also had the lumbar puncture and all the works. Just slightly annoyed they didn't do the eeg scan which apparently can identify certain types of seizure.

Keep pushing if you have any concerns

I was reading the first half thinking "hang on, is this reflux?" and then you mentioned the reflux. One possibility might be for your GP to increase the reflux treatment, and see if that helps...