Infant Shuddering Syndrome or Shudder Attacks
What is it?
Infant Shuddering Syndrome, Shudder Attacks or Shudder Syndrome is a relatively common, but little known movement disorder that can happen to babies. It has no long term affects and can be considered “normal” although as a parent whose child had it – at the time it’s hard not to think of the worst case scenarios!
From the experts – “Shuddering attacks may begin in infancy, as early as 4 months, or in childhood. The events consist of a rapid tremor of the head, shoulder, and trunk suggestive of the “shuddering” episodes from a chill. The duration of the events is brief, lasting only seconds, but the events may occur multiple times a day.” (http://flourishpaediatrics.com.au/cms-health-library/going-home/common-medical-concerns-and-problems/infantile-non-epileptic-events.phps)
It’s hard to describe without a video – this one on youtube most accurately shows what The Boy’s episodes looked like. https://www.youtube.com/watch?v=3kFcWh3yfKo In addition he would generally clench one more both fists.
Our experience with Infant Shuddering Syndrome
I noticed The Boy making some strange “jerky” movements one Saturday morning in November and immediately took him over to my Mum (a Doctor) fully expecting her to say it was completely normal. The Boy was increasingly making these movements for 1 – 2 seconds at a time and it was hard to tell if he was conscious or not during them or if we could make him snap out of it.. To us – it looked like he might be having some minor epileptic fits, however it was difficult to say as he had previously made similar movements when getting angry or upset. Thinking it was unlikely to be anything we headed to Hammersmith Hospital A&E to get a quick once over just in case.
Once we got to Hammersmith we learnt the Paediatric A&E was only operational Monday – Friday so we had to wait for the general care. The A&E doctors were split. One thought it was definitely epileptic fits, and one thought it was more likely to be just an odd movement pattern. We were advised that it was best to head to the specialist Paediatric centre at St Mary’s Hospital.
After a casual six hour wait at St Mary’s we were finally seen and reviewed by a junior doctor. Again, she was unsure about whether the “jerky movement” was caused by fits or was benign so it was decided that we would speak to the consultant and do some blood tests just in case. While waiting for the bloods suddenly everything changed. Routine observations by the nurses taken as a precaution found that The Boy had started to have a fever. This combined with the potential fits meant that he was suddenly at high risk of suffering from meningitis, encephalitis or sepsis. We were immediately admitted to the ward and The Boy suffered a lumber puncture among other invasive tests. He was also started on strong antibiotics and antivirals to fight whatever infection he may have had.
In the meanwhile, the doctors were still concerned that The Boy’s jerky movements may not have been connected. This is where the panic started and I started to worry about degenerative neurological disorders which are caused by fitting. It wasn’t until we had an EEG test that we could see if The Boy had a brain disorder or not.
To cut a long story short after four nights in the hospital we had final confirmation that The Boy had a Urinary Tract Infection which had caused the fevers. We were also able to see that the jerky movements were not any kind of fit and were benign. It was agreed that The Boy’s illness caused his shuddering as part of We were discharged with a reminder to keep an eye on any change in The Boy’s progress.
Infant Shuddering – 6 Months Later
Six months later, The Boy still shudders when he is frustrated or really excited. We’ve all got used to it – it no longer sends me into a tailspin! He’s met all his milestones (just started walking yesterday at 13 months!) and there seems to be no long term effects of his “strange movements”. Interestingly, one of our other friends experienced similar movements at roughly the same age.
Advice if you are worried about Infant Shuddering
The first thing is to not panic. The majority of infant fits or movements will be benign or easily treatable. Whatever you do – stay away from google and contact your Doctor or go to a paediatric A&E.
The most useful thing you can do to prepare is to take a video of your child making his or her shivers or jerky movements. It’s very difficult to describe what an episode looks like and minute differences such as whether it affects one or both sides of the body can affect next steps with the Doctors.
Finally, please feel free to reach out. Writing this article took a long time because it was, and still is, so upsetting for me so I understand how confusing and scary it can be.