Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
Call emergency services for a seizure lasting five minutes or longer unless the child’s emergency plan gives different instructions.
Emergency help is also needed for repeated seizures without recovery, severe breathing difficulty, blue or gray coloring, a serious injury, or failure to become responsive as expected after a seizure.
Seek prompt medical advice for new clusters of possible spasms, a clear increase in seizures, loss of skills, repeated choking, poor intake, unexplained sleepiness, or new breathing symptoms.
Suspected infantile spasms in a baby should be assessed urgently rather than waiting for a routine visit.
Routine follow-up commonly involves neurology, primary care, ophthalmology, rehabilitation services, and developmental or educational teams.
Some children also need gastroenterology, nutrition, pulmonology, orthopedics, or sleep medicine.
As children grow, follow-up should include planning for school support, equipment needs, puberty, transition to adult medical services, and future decision-making.
Genetic counseling may be revisited if testing methods or knowledge about the condition change.
The article also says
Appointments may review seizure frequency, medicine effects, growth, nutrition, bowel habits, sleep, breathing, mobility, pain, vision, and communication.
Keeping a seizure diary or short video of unusual movements can help the clinician understand what is happening.
Videos should be recorded only when it is safe to do so.
Every sign above is quoted from the sofidex article on Aicardi syndrome. If you are not sure, err upward — it is always reasonable to be checked.