Recognizing IS

Early Signs to look for in IS:

  • Moro/startle reflexes after 4-5 months old
  • Series of abrupt head drops
  • Cluster of shrugs or jerks, either with hands in front or outspread, may have knees up at same time
  • Developmental delays or regression (“forgetting” skills)

Early Signs for look for in CP (cerebral palsy):

  • One hand closed tightly often, with thumb tucked in
  • Hand preference (aka right- or left-handed) before 1 years old

This is a difficult video for us to share. The soft shrieks in the beginning of the first two spasms in video are not a part of IS, they’re my response to seeing my son go through this for the first time. But we’re sharing this in hopes of helping another parent or caregiver recognize the symptoms of IS.

These seizures may not look severe or violent like classical seizures, but they do tremendous damage to the brain. Untreated, most patients don’t live past 20 years. Therefore, prompt treatment is crucial. After having just a few days of these spasms, my almost-6-mo-old son not only forgot how to roll over, he couldn’t prop himself up at tummy time anymore, forgot how to lift/turn his head to breathe when lying down, and became uninterested in toys or objects. He also lost strength in his left arm.

If your child starts to do a series of sudden head drops or does a repeated motion that looks like he/she is scared/startled for no apparent reason (or may look like pronounced shrugs or crunches), DO NOT WAIT. It does not need to look like seizures to be infantile spasms. The head drops/unwarranted startles are enough to cause serious suspicion. If your child is between 4-8 months, then be even more prepared, although this happens to infants as young as newborns and children as old as 4 or 5 (although rarer). Take him/her to the emergency room for the spasms. Request an EEG immediately. Seek treatment. We were SO fortunate to have gotten an appointment with a pediatric neurologist the next day but most pediatric neurologists have at least several weeks waiting time for an available appointment. You don’t have weeks. The earlier you seek treatment, the better the prognosis for your child. So please act now.

Side note on treatment: Start doing your research on treatment. There are many options out there. But if you want ACTH (or even VGB), you need to start working at getting it soon. See ACTH Resources for more information on obtaining ACTH.

Tidbits to note or maybe insignificant:

  • I had hyperemesis from 7wks to 4.5mo pregnant and it was very severe, requiring IV 3-4 times a week, at least 1-2L (sometimes more) each time. I fainted twice due to dehydration. I lost 15lbs. Afterwards, I gained a very healthy 40lbs but stayed nauseated during the rest of my pregnancy. I did have a bout of (what we thought was) gastroenteritis at around 25-26wks and I also had a week of abnormally high glucose in my urine sometime during mid-3rd-trimester, after testing negative for gestational diabetes (I was borderline GD–failed 1hr test, passed 3hr test) with my first pregnancy.
  • I had false labor at 36 weeks, it was frequent/consistent contractions that were 10 minutes apart and lasted all night. But it never increased in frequency and that was that. Doctor said it was true BH contractions and just false labor, nothing to worry about.
  • He spat up rust-colored mucous the night after he was born, in the hospital. I frantically called the nurses, even showed the mucous I caught to them, they said it was perfectly normal and he just needed to cough it up. They helped me burp him a few more times. He always had a healthy red color to his skin (maybe too red, but they said it’s just his temperament) but no one was ever concerned because he wasn’t even remotely blue or purple.
  • A lot of IS parents shared that their kids were very fussy in the first few months of life. Kaleb was also extremely fussy (we had thought maybe it was colic and had even brought it up with the pediatrician many times but they’re not concerned unless the baby is crying a lot more than 3 hours a day and Kaleb was more like 1 hour).
  • His head tends to always drop to the same side when sleeping in his car seat but thought it was just the angle of the seat/car (CP).
  • He always liked sucking his right thumb more (CP).
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