Signs of Infantile Spasms

Infantile Spasms (IS) are a medical emergency. Infantile Spasms are a rare, but serious type of seizure, occurring in 1 in 2,000 children, which can cause catastrophic, permanent damage to a child’s developing brain. The seizures include repetitive, but often subtle movements — including jerking of the mid-section, dropping of the head, raising of the arms or wide-eyed blinks.

We're raising awareness about Infantile Spasms in hopes of a brighter future.
Know the signs to 'STOP' Infantile Spasms:
S - see the signs
T - take a video
O - obtain a diagnosis
P - prioritize treatment

[biancapolenzani]

To all the mothers who are currently freaking out watching this video. Yesterday I saw it and I panicked because my daughter does everything, every single thing showed in this video. I went to the ER and they did an EECG and she is perfectly fine. I don't want to belittle what is the aim of the video, but yesterday, while I was crying on my way to the hospital, I would have liked to read a comment like this.

[colinfletcher]

Well im a first time dad of a 1 week old baby girl just looking at baby videos trying to get advice. And i keep coming across videos like this. My daughter doesnt seem to have any of these signs but her dad had seizures as a child so this literally my new nightmare. Im.glad i found these types of videos. God bless every ones baby ! Wish me luck

[fairytale]

Praying for all the little angels while holding my healthy princess in my arms. May every child be blessed with good health...

[KssN]

I’m a nursing student and just want to echo the encouragement to advocate for yourself. Doctors are humans, and healthcare system is failing us all in so many ways. If you think something is wrong, please keep demanding help!

[andrejkitain]

As a west syndrome survivor, life for me wasn’t easy! I had seizures almost every day, and had to undergo a lot of treatments. But I am really grateful to be alive. I am 19 now and I am living a happy life in the most healthy way possible! To all mothers, pls do not panic, everything will be alright, I feel your pain, but pls dont give up! If i was able to survive, so will your child! ❤

[shoosh]

The signs in the younger babies were noticeable but in the older baby in the high chair, I wouldn’t have even noticed them. This is scary. Thank you so much for bringing everyone’s attention to this.

[GingerSnappx]

My daughter was diagnosed with Tuberous sclerosis. Our story began around 4 months old. We started noticing she was making odd movements such as in this video.

We too were told this was normal and she would grow out of it. I kept taking videos of my daughter’s incidents…

At age 6 months my baby girl had an identifiable seizure. 😢

Then she started screaming in pain… and had another back to back.

We had to call 911 twice as the first time they dismissed our concern. (Covid times)

I took video of this event.. and she was raced to the nearest children’s hospital. She kept having seizures every few minutes. Which this can cause issues with oxygen.

Please follow your intuition, if you feel something is not right keep trying to find help.

My daughter is alive and well. Every day I am thankful we were able to get her help… with our determination 🙏🏻 ❤ 1:57

[catchme]

My 2 week old niece is currently diagnosed with Meningitis. She had fluid in her brain and used to have continuous spasms like these. I hope doctors would spend time listening to their patients concerns’ rather than dismissing everything as normal.

[RebeccaFuji]

Watching this scares me. I don’t ever want that happening anyone in my family. Especially small babies and children. I have a 6 year old who’s autistic too. I don’t ever want him going through any of that suffering

[samanthalofgren-sfko]

My daughter was in this video. If you suspect infantile spasms you should go to a Children’s Hospital, not a regular hospital ER.
I learned that the hard way. I got my daughter diagnosed only 4 days after her first seizure. I brought her to an ER close to me and they shrugged me off. It happened a few more times. Looked up infantile spasms and knew she had IS. She was diagnosed 10 minutes after getting checked into a Children’s ER.

[gloriat]

This should be circulated to all pediatric facilities. My son's infantile spasms were diagnosed, not by the pediatrician, but by a medical student interning in the pediatric practice. She had recently studied infantile spasms and the signs in class. None of the doctors in the practice recognized the seizures.

[kimberlymelhorn]

Push and keep advocating for your child if you suspect this. I had to push for over a month until we got the official diagnosis and got my daughter on medicine. Trust your instincts. You know your child.

[nivikarkera]

I freaked out watching this video as my 3 months old baby was getting spasms like this continued for 1 week and it stopped completely. What i did? As soon as symptoms started showing up I started praying and rejected all those symptoms in the name of jesus and started proclaiming word of god from the Bible on him with authority-as a mother ❤ and my baby is completely healthy and no more spasms with the grace of God. Praise god🥰

[tyler]

my late child infantile spasm being diagnosed by my wife, although he has been kept in NICU for 2 weeks and no one observed what has been going on sadly he passed away suddenly at age of 3 month due to sudden infant death syndrome, ,keep spreading this essential knowledge to help people out there to understand the risk, ,,sorry for my bad English ..i wanted to share my experience for general awareness

[kaycampbell]

Why haven't we heard of this before?! I can see how it would be hard to detect but the public needs to be informed of what to look for.

[ummija_swummija_studio]

My daughter is Infantile Spasms Fighter too. She was first diagnosed with Infantile Spasms at the age of 4 months. Indeed it often comes. Very often. Everyday... We seek treatment by seeing a pediatric neurologist since the diagnosis. I've tried many drugs too. Including Sodium Volpreate, Vigabatrin, Prednisolone, etc ... i'm still remember that she was struggling & restless when its comes. But, after a few years of treatment, she is better now. No more new episode of spasam @ seizures on 2019 till now. Now, Damia already turns 7 yrs old.

[nellielee]

Wow I just came across your video and Saturday while babysitting my great grand baby I witness him have these same signs. So I made 3 videos to show his dad which is my grandson and his mom. So his mom and dad took him to the ER he stayed in the hospital 2 and a half days for tests and the brain test came back good Praise God, but they will schedule a follow up appointment with the Neurologist, They was discharged today.

[aghalibejane]

I am a trained Nurse/Midwife and I see this alot in new born babies, especially immediately after delivery. I saw it as startle reflex, i never knew it was a red flag. I will take note next time I take a delivery or handle a neonate

[t]

You can definitely see how this can be mistaken for normal baby behavior.

[ILikeItbyrajshri]

This is so true I haven't seen this earlier my daughter was doing all this and we misunderstanding it normal but later daughter diagnosed with brain genetic disease with max damage already done now praying for recovery