To worry about infantile spasms

[Rooandtwo]

Hello

my DD has had a head twitch to the side as she falls asleep for the last month or so. I have spoken to our GP and we now have an appointment with a paediatrician next week (feels like a long wait).

Starting four days ago though, when trying to put her down to bed for the evening, she seems to be suffering with sudden spasms which wake her up just as she is drifting off. They don’t really look like the spasms I see in online videos of IS, but her arms will suddenly jerk, often towards her face or head, jerking her awake and looking around frantically. If I feed her she will again drift off but minutes later it happen again. I am having to find ways of restraining her arms as she drifts off to her her get into deeper sleep.

Is this familiar to anyone? I’m so worried about her. Anxious FTM.

I think there is a Facebook group that may be useful for you to ask in?

Have you got a video of it happening? If not, make sure you get at least one to show the paediatrician as they are SO useful.

THIS.

We took our son to Paed A&E after a few fits - he would crunch himself into a ball, and then release, repeatedly, for about 30 seconds. We video'd it as we knew it wouldn't happen in front of anyone. The attending doctor took one look at the video, diagnosed IS, admitted him to ward and he started on steroids within an hour. Fortunately it was the right treatment and he didn't have another IS fit from that point onwards.

I’ve video of the head twitching and took a video tonight of her sort of frantic movements after startling awake. My husband is out tonight but next time I’ll try to get him to film to show exactly how it wakes her. These spasms only happen when she is being put down for the night - never at any other naps in the day. The head twitching only happens when she is drifting off but happens at any nap or sleep. Her right hand also trembles in the evenings when she is getting tired. I don’t know if any of this rules IS out? It’s so hard to wait a week wondering.

How old is your DD? My DS would also get a tremor in the arm in the evenings when tired but it stopp

My daughter experienced an "exaggerated startle reflex" as a newborn when she was falling asleep. It was difficult as it prevented her from napping and woke her up. At the time my health visitor assured me it was normal for some babies and she would grow out of it (and she did with no side effects at all when she was still very small). Hope you get the answers you need x

Sorry posted too soon. Meant to say the trembling arm stopped as he got older. The spasms when falling asleep could just be the Moro Reflex (normal in babies), and I noticed this was more common at night with my DS. I remember worrying about infantile spasms too at the time as I'm also a FTM so wasn't sure what was normal, but he is fine. But of course get things checked out by the paediatrician to be safe.

Thank you these are reassuring to hear. DD is 12 weeks. I worry about her possibly because I’m a FTM but also she was 10th percentile born at 39 weeks. She’s strong and developing well as far as I can tell but still I worry.

Im sorry you are going through this. If it infantile spasms there is a pattern of brain activity that is very distinctive so they can confirm or rule out straight away. If she has one before the appointment take her to an and e because infantile spasms are considered a medical emergency.

It does sound like it could be a startle reflex though. They do advise you film it so it is helpful that you have a video.

It sounds like the startle reflex by your description but obviously I can't be sure. Look up videos of baby doing the startle reflex and see if it fits what your DD is doing.

I worried about the exact same thing with my DD when she was between 1 and 6 months! I did raise it and it was taken seriously but they want videos of the potential spasms. My DD was fine - she is just quirky with lookalike spasms and breath-holding. She's 20 months now and doesn't do it any more.

I agree it sounds like startle or Moro reflex but why would that be getting worse? She usually just makes one movement when she startles and throws her arms up. This is diminishing over time, but this reflex / spasm has only started this week and happens seemingly out of nowhere as she drifts off to sleep. She’s then sort of frantic for maybe 10 seconds or until we can get her to latch or pay her or bouncing her will also stop it.

Are you taking any medication?

As I understand with infantile spasms you would also see baby regressing in terms of development. you have said they are developing well so sounds unlikely.
however the advice is if you suspect infantile spasms you should treat as a medicinal emergency and take baby to a&e (preferably a children’s hospital). If you are genuinely concerned the next time it happens take baby to a&e

I had concerns about DS as a newborn as he was very twitchy and used to sort of shudder when he was sleeping. As others have said, show a video to a HV or GP. We did and they said it was nothing to worry about, just his nervous system basically working everything out. He stopped after a few weeks but can’t be sure exactly when.

You’ve done all of the right things and in my personal experience they don’t mess around with this kind of thing with babies/children, you’ll be seen and referred/treated quickly.

I had a similar experience with my youngest and he was referred to a neurologist and then for a brain scan, EEGs etc very quickly.

Long story short - he was fine and grew out of it. We had reassurance very quickly as the scans etc showed nothing to be concerned about. Hopefully it’ll be the same for you.

I completely understand the fear and worry - take it one day at a time and try to remember that it’s much more likely to be nothing serious 💐

And very much echo the getting of good video evidence!