What Are Infantile Spasms?

Infantile spasms are a detrimental type of epilepsy.
They are usually accompanied by developmental delay, regression and hypsarrhythmia (a chaotic brain wave pattern visible on an EEG). So often they're missed because they can look just like a startle or colic, but it's crucial for a child that they're noticed and treated quickly to improve outcomes.
00:00 Intro
01:02 What Are Infantile Spasms?
01:52 How Do Infantile Spasms Look?
03:36 Examples of Infantile Spasms
06:06 How Spasms Look Cont.
06:44 How Do They Diagnose Spasms?
08:21 What Happens After Dianosis?
10:08 Testing and Causes
11:05 Important Things To Remember
11:31 Closing
I was not prepared for anything like this at all, especially as a first time mum. I believe every parent should know about spasms - they're something many doctors aren't even familiar with.
I have shared clips of my daughter's spasms in this video. She presented many different types, due to her SCN2A mutation, so there are a range of examples of infantile spasms.
In this video is everything I've learned so far about IS. There will be things I haven't experienced or might've missed. Please let me know in the comments below.
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Information on Infantile Spasms:
www.epilepsy.com/learn/types-...
www.ninds.nih.gov/Disorders/A...
www.healthline.com/health/inf...
www.childneurologyfoundation....
www.healthychildren.org/Engli...
IS Research Links
www.ncbi.nlm.nih.gov/pmc/arti...
www.ncbi.nlm.nih.gov/books/NB...
www.ncbi.nlm.nih.gov/pmc/arti...
onlinelibrary.wiley.com/doi/1...
Metabolic associations full list:
www.ncbi.nlm.nih.gov/pmc/arti...
Genetic associations full list:
www.ncbi.nlm.nih.gov/pmc/arti...
Keto:
www.epilepsy.com/learn/treati...
www.ncbi.nlm.nih.gov/pmc/arti...

[@pamtorneros6668]

Praying for your daughter's full healing and recovery, God bless your family! Thank you very much for sharing this video.

[@tanmaytandel7462]

Thanks for sharing the very useful information on IS and video. You are one brave parent. Wish your baby and family best.

[@roseannsanchez7881]

God bless you for making this video. Thank you.

[@pengzhang3006]

Hope she is doing better today. 💛

[@vee8650]

Thank you for sharing this ❤

[@lauriewromar5478]

At two months old we had this scare with our daughter. We took video of her doing it on multiple occasions and showed them to our pediatrician. Unlike your story we had a much different one. Our Dr took it very seriously and immediately referred us to have an EEG done.
In the end, all was fine. I don’t think we will ever know why she was doing the strange movements she was doing.
I am grateful though that we had the over cautious Dr who wanted to make sure versus being sent home to worry and wonder.
We lived in Oregon in the US at the time.
I hope all is well for you and your beautiful girls and family.

[@teamjesus8217]

Same thing with our daughter, she is turning 2 months old when she started having that kind of seizures.
We rush her to the hospital and conduct EEG. The result was negative but still the seizures occurred. Then we ask our pediatrician/neurologist for medication.
The Dr. gave us Oxcarbazepine an antiepileptic drops. We are still here in the hospital. And hoping the medications and the care given by the nurses and doctors treat our daughter.

[@MsPbass]

Same with my daughter (also live in Oregon). We went to OHSU Doernbecher Children's Hospital, and they performed CT scan, EEG and dilated her eyes to check her response to light a part of a neurological exam. They diagnosed her with Infant Shudder Syndrome that is benign nonepileptic events. She does have a follow up appointment in about 3 months with Neurology but the whole thing has been terrifying.

[@cinemajuan8665]

How is your daugther now? Hope shes doing well

[@sunainasadia4641]

​@@MsPbasshow your child does that syndrom kindly guide me and how is your chikd now

[@deongwilliams2980]

Thank you
This information is very help

[@gowthamiella]

U r great and brave... thank you for sharing the video

[@angelofreda1471]

Thank you for a very informative video. My granddaughter will be evaluated by a pediatric neurologist soon

[@gosiadynska3322]

Very useful! Thank you❤

[@sparklypoet1454]

Thank you so much

[@lisavineyard348]

God bless you and your family ❤

[@louissimard691]

Thank you 🙏🙏🙏❤️

[@dylansharp8714]

Very interesting video.

[@lucyavarda1742]

My daughter tenses her jaw and sometimes seems to have a cold shudder. The doctor noticed her head shape seemed unusual in March but then did checks and all appears to be fine. I've noticed the twitches since she was 6 months old (March). I definitely want to take her in but developmentally she is quite far ahead. She is also a twin and both appear to be thriving

[@juliegarcia802]

Thank you for sharing your experience and all the information you have on IS. Currently advocating for our 2.5 year old son who may have this but doctors are saying he's too old for infantile spasms. We just noticed he started doing these movements a couple months ago. We first made an appointment with pediatrician, he was seen 3 weeks ago and got an appointment for an EEG (scheduled for August 6) but after seeing videos 2 days ago about IS, we decided to go to a children's hospital ER. We were admitted and now waiting for EEG test this morning. Hoping to get help, answers, and medication for our son.

[@atypicalday8]

I hope everything went well with your son’s EEG. From what I’ve learned about IS, majority of cases are under 4. 2.5 doesn’t seem too old at all! Its so good you’ve done the research and are advocating. It sounds like you’re doing a wonderful job taking care of your son, he’s in the best hands ❤️

[@omoladeolude2679]

Hi,I know this was a while ago but, how's your baby doing now?

[@juliegarcia802]

@@omoladeolude2679 Hi! My son is doing great! He was diagnosed with epilepsy, specifically lennox gastaut syndrome. But God is good, he healed my son! He hasnt had a seizure since November 20th, 2022. He has confirmed it many times that he is healed. However he does have some delays such as speech and others but he is getting therapy and it is helping. He is progressing and talking a lot more. He is so smart! He was evaluated by the school district and he was able to go to pre school for children with special needs and hes doing great there. I never want to go through this experience again because it was scary and we felt helpless and hopeless but this only drew us to search for God and thank God we did because now our lives are changed forever. My husband who wasnt a brliever in God and Jesus Christ is now a christian, never attended church before but now loves going. We are now a praying family who serves the Lord. I see his hand moving in every aspect of our lives and he is now changing my familys lives too bringing them closure to him. I owe it all to him. Thank you for asking about my son. I am so thankful I got to share this with you. Blessings 🥰

[@funlyfe0321]

Hey :) how’s your baby now?

[@jennifermorris6888]

I agree... How is your baby now that it's been a year?@@atypicalday8

[@jaysoncaabay2328]

How long they treat the INFANTILE spasms

[@CarolineElizabethMartin]

They’re usually repeated right? Like a few spasms in a row?

[@parwatisamant1010]

God bless the baby

[@Stacey22Collins]

I'm so curious of this my daughter is 10 weeks old, bring diagnosed with epilepsy, I've only seen her having 2 tonic seizures, she does something so similar to these spasms with her legs and arms flying out and her getting quiet upset like she gets a fright or in discomfort, these happened while getting an eeg and nothing showed up at the time, I have medication to use when it's going on a long time but the days these happen it can happen every 5 minutes for at least an hour up to 7 hours, I have about 100 videos on my phone and they are all the same she use to do the eye rolling badly and I was told it was wind, shes had a stroke after open heart surgery and has being having seizures due to the stroke as it has left damage and fluid on the brain where it happened, im at my wits end with worry when they're happening

[@atypicalday8]

This sounds really scary. I just want to let you know first that you’re an amazing mum, even if you don’t realise it right now.
To me it sounds like infantile spasms. They can occur without the EEG abnormalities - when our daughter’s IS relapsed she didn’t have hypsarrhythmia. Especially because of an epilepsy diagnoses and the stroke history, I would definitely push the topic; even if it isn’t infantile spasms, having these events over and over, over so many hours, isn’t good. It lowers quality of life (saying this usually helps doctors get moving).
I really hope you get an answer and find something to help!

[@swatswitzerlandofasia9146]

Ma Allah mercy upon her Ameen
And thanks for very informative words that's you share 👍 how is she now?

[@felicitye1395]

❤️❤️

[@marinabachour589]

Hello, please I need you to share what was the treatment given and how she is now.
My son was diagnosed at the age of 9 months with infantile spasms, now he is 12 months old but the sings are not going well with us.

[@florschannel2093]

Hello, I’m waiting for testing too, how is your baby doing?

[@nonjabulohlongwa2305]

Very interesting thanks for the information and im suspecting my kid has sizure he cries while asleep he frightened and squirt his hands and legs I'm so worried they are twins

[@mahnoorshafique8079]

How your kid now?

[@lavishsheka4564]

My son have been doing this for about a year and a half and they usually lasts 3-4 minutes and like 4-6 times a day.. and I told his doctors soooo many times and they're telling me he's okay, and I know this is not normal

[@sunainasadia4641]

How is your child now

[@blueridding]

How do you get a video of the attack is so quick? My baby is having head drops, but it’s literally only one second so I don’t know how I will ever catch one on camera and I’m so nervous that we won’t get a correct diagnosis because I don’t give the neurologist enough info

[@74ansel]

Hi Shanna!! I hoped you baby is ok , I understand for your comment because I was on that moment of caching up my baby doing head and body shake for a second , we keep monitoring him all the time , long short story, you may speak with your pediatrician, to see a neurologist, they’ll do a EEG test , we as a parents have to take anything serious with ours baby because they can’t speak and the good things there are professional to help us . I’m hoping you get the help you needs.

[@atypicalday8]

At the start we got the videos by just recording a lot. I sat down and recorded during times my daughter would normally have the events - like when she was tired in the afternoon. It would be sometimes 30 minutes of recording before we’d catch one. Then we’d stop and start a new recording (to easily find the spasm). Spasms happen in clusters, usually more than 1, so if you think you’ve missed one just sit and record for a while.
When we go back through old videos of her from that time we’ve noticed a spasm here and there too (ones that we missed at the time), so you might be able to find an event that way as well.
But, like 74ansel mentioned, you don't need a video to get a diagnosis! It helps, especially if you're getting any resistance from doctors. But there are many children who are diagnosed just by going to the hospital and talking to a doctor. Your concerns are valid without "proof" and should be taken seriously.

[@Pacifictheory]

Your daughter is beautiful. :) how is she doing today?

[@neogarcia3234]

Do you call 911 every time he has a spasms??

[@muqadasnoor2276]

Why doctors delay it, I mean when they see these videos they should recommend us to do EEG ,strange

[@shielamayo8702]

My daughter has infantile spasm.

[@kathythureen9341]

i have had seizures.

[@lisavineyard348]

God bless you and your family ❤