To think my baby is having some sort of seizures

[QueenOfThePumpkins]

My 12 week old daughter has these terrifying episodes where she will fling out her limbs, go completely stiff with an arched back, go bright red in the face, dribble, eyes wide and frightened looking, frequent hard swallowing. This can last for up to 5 minutes and it is very difficult to "bring her round". But as soon as it's over she behaves as though it never happened. The first time it happened we took her to casualty, where we were assured that it didn't sound like a seizure but was linked to her reflux. But it's just happened again (about the 5th time) and it really scares the living daylights out of me.

The doctor who reviewed her last time is fantastic - we know this as we have dealt with him over our other child. He is regarded as the best paediatrician in the hospital. But I'm just not confident that he's right about this. Would love to hear any thoughts, especially from anyone who has experienced similar.

Keep your cell phone on you at all times and video record it next time it happens. I have friends who couldn't get their daughter's seizures taken seriously until they did this.

Have you tried videoing her so they can see exactly what is happening?

I agree with the advice to record the incident.

I know how frightening is is when your child has a seizure. My DD3 (2yrs) suffers from reflex anoxic seizures. They are seizures children have - usually following a shock - where their heart very briefly stops beating. (It sounds more serious than it is and it’s not thought dangerous.)

I only realised they were happening when DD was 8 or 9 months old but in retrospect I think she had her first one at 3 days old after the heel prick test. She was diagnosed after I videoed an episode when she was 1 and showed the paediatrician.

This maybe a completely different thing but thought I would mention as I had never heard of RAS before.

Look up Functional Neurological Disorder.

This sounds terrifying OP, I have no advice other than to video and ring 999 when/if it happens again

Just to describe DD1’s seizures for you in case they sound similar:
she hurts herself or gets a shock in some way, she usually goes red and looks as if she is crying but no sound or a sort of snorting will come out. She arches her back and goes rigid and she flings her limbs out. She stops breathing. Then she sort of goes floppy and almost into a short ‘sleep’ where she starts breathing again but won’t respond. Sometimes her eyes are open, sometimes closed. When she comes to she sometimes cries and then is completely fine, occasionally a bit more tired than usual.

The classic trigger for her is a shock or hitting her head but she also seems triggered by other pain, like teething or even just being poorly. If this does sound familiar I wonder if your DD’s reflux could be triggering the seizures? Caveat that I’m not in any way medical.

Sorry I misread your daughters age - ignore me. FND isn’t seen in infants.

Thanks everyone. When it happens I say to myself "you need to be recording this!!" But I'd find it too difficult to stop comforting her. Annoyingly I've been alone every time it's happened, but if there is a next time then hopefully DH will be on hand to record it.

@Gunpowder that does sound very scary. Glad to hear that it's not as dangerous as it sounds. Your description does fit quite well with what my daughter does and your theory sounds plausible. I think I'll have a chat with the GP and see if that could be explored.

Thanks so much.

It took me over three months to record an episode OP and initially it was always just with me. I think DH/everyone thought I was exaggerating. Good luck with the GP. I hope you get a referral quickly to clear up what it is.

My son had benign neonatal sleep myoclonus and he ended up being diagnosed at GOSH but it was the video that really helped them, he had a CT scan and an EEG to rule anything else out. He’s a completely fine (5 year old) now but that was more of a rhythmic jerking so doesn’t sound too similar to what you describe. I wouldn’t be shy of asking for a second opinion or further investigation if your instinct tells you to, I did see my nephew do something similar to you described after running into a door, but he made a very quick recovery and was then fine, we thought it was the shock.

DD did this around 9 months old. I recorded a few episodes and showed the GP. They sent her for an EEG and then we had a review with a consultant who said she was fine and it was caused by constipation. Prescribed her movicol and it worked. I would definitely film it as you’re more likely to get a referral, but it may be nothing serious.

My son had seizures from when he was a baby until he was 3 when he grew out of them - as others have said, it’s imperative to get at least one on video.

We were referred to the neurologist on the strength of my description but when we started seeing her she said the videos were vital - she pretty much diagnosed him from them but then confirmed with EEGs (sleep and awake). He was also scanned through his fontanelle to rule various things out.

It’s scary when you’re in the midst of it but if you do end up being referred, our neurologist and team of nurses were amazing; we could contact them directly any time and they were just wonderful.

You absolutely must get this recorded on your phone.

We have been having this for 5 years and repeatedly been fobbed off by ‘She’ll grow out of it’.

Enough was enough and three weeks ago the seizures changed for the worse- a completely different type. Ended up sending the video to our GP and within 12 hours we were in a new paediatric department with a CONFIRMED diagnosis of a benign epilepsy, medication and plan for moving forward productively.

Good luck with your baby, OP. I understand it’s scary but she really does need you to film her.