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.
@@bijayaghosh2312 My baby is 2 months old and now she is perfectly fine. They did an EECG and a brain scan, and they also run some blood tests, and she is perfectly fine! I also showed a video of her "spasms" to doctors and they said that they are normal
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
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! ❤
@@sahararshad5044 A lot of my medications werent rlly for children, or the dosages were high. i cannot remember most of the medications since it was very long time ago, but i do remember taking some kind of pills. Since they werent for children, i vomited a lot because of them.
This is is a real condition but the tone of the video is shameful. This video made my wife panic in her sleep deprived state from caring for our child. Frankly, using such methods to spread awareness of a condition is fearmongering. The music, the questions all of it. Spread awareness by being informative not by causing attention grabbing panic.
If you see this and don’t panic your baby will grow up neurologically impaired. The point IS to instill fear. Many people still don’t fear diabetes and default treatment even though it’s life threatening. This condition is life altering. If you are not scared you are careless. Be scared so you are aware.
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.
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
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Specialists always told me IS is rare. But as a mother with a child that had IS and joining Facebook support groups, it doesn't seem rare at all unfortunately.
I think it is so important to spread this as first parents would not know this...I told GP about our child who is in pain as I know she is they said everything is normal..breathing grunting having pain before poo, after eating always grunting. All.normal...I am.looking for another doctor...
My son had it and I diagnosed him and the previous hospitals tried to tell me he had the hiccups absolutely not they tried to medically gaslight me and tell me I was being dramatic but I wasn’t having it and because I didn’t have a medical degree everyone was very condescending until I took my baby to one hospital and the nurse said wow I think your right mama (she wasn’t even supposed to do that) but it felt like the weight of the world lifting off my shoulders because someone beloved me! and they immediately did an eeg and I was! I hate that medical professions feel like they just know everything and we can’t possible know anything because we don’t have a degree. At the end of the day i caught it within 24 hours no brain damage occurred and my baby is 3 now and perfectly fine but it was a scary time
New dad here: so Zoe got the rota vaccine (8 weeks on Tuesday morning). In the afternoon she had moro reflex (looks like this video) almost every time I laid her down. Called 112, took her to the hospital where she spent 3 nights with the mom. Had her eeg, blood tests, urine tests all that stuff, really cool dutch doctors looking at her telling us it's moro reflex, but because I was freaked out of the infintile spasms I could not be soothed. The neurologist said its impossible for her to have epileptic infintile spasms at the age of 2 months. The day after it was less, the fay after even less and now its almost not happening. I read a bunch of research papers about infintile spasms (both benign and epileptic), understood how super low the odds are of them being this. And now I read that a bunch of kids had sensitive startle reflex after 8 week vaccine. The few little hair I have left on my had could have retained its non-white color had I not been freaked out to death by this video. Advocate for your kids, but know it can be 50 other things before it's infintile spasms that will cause your kid to be a vegetable for the rest of their life. Overtreatment is also a real danger (read up on benign myoclism of early infancy for example). Take care of yourselves and best of health for your kids PS: even though i think it was cause by the vaccine as a side effect, im not a moron and will be giving her all the vaccines she is recommended by the modern medicinal expertise and be thankful we live in a time these are available for us for free
You are LITERALLY a moron when you child had a bad effect to a vaccine and you continue to inject them with more. Was saying I’m not a moron supposed to make you look like the cool, educated , play by the rule book dad? You’ve got to be kidding me! They have y’all brainwashed good! Don’t want to say no because it causes conflict but would risk your child’s health. God forbid anything else happens. Don’t forget they can still get sick with what the vaccine supposedly prevents them from.
@@pratyushshukla9362 We don't need to tell Allah what to do. He is Almighty, creator of this universe. He knows everything, but you illiterate people are denying the reality...
@@fairytale8424if we don’t need to tell him what to do then why did you tell him what to do in your first comment? Why bother praying at all if you can’t ask him for help?
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.
Yea I went to my doctor about the movements and she said it’s normal. I literally HATE how she tells me EVERY CONCERN I HAVE FOR MY BABY IS JUST “normal behavior” like cool my affordable healthcare is paying you to nudge me away. Fucking plendid. Science, medical, tech, it’s constantly CHANGING and THESE DOCTORS NEED TO RESEARCH. Just because you got your doctorates doesn’t mean you can’t continue to learn new and tested information/studies.
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.
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.
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!
Mi bebé empezó a los 4 meses con estos movimientos y mi corazón de madre me dijo que algo no estaba bien, ella dejó de comer y reírse, la lleve de emergencia con su pediatra y me dijo que algo pasaba con ella y la refirió inmediatamente a emergencia, esa misma noche le hicieron un EEG y le diagnosticaron los espasmos infantiles, gracias a Dios se le quitaron le recetaron prednisone por un mes pero quedó con un diagnóstico de epilepsia, aún está en tratamiento, tiene 14 meses y problemas con su desarrollo psicomotor, estamos en estudios de genética para tener un diagnóstico exacto, gracias a Dios ha tenido un buen equipo de médicos en el Hospital de la Universidad de New Mexico
My child is almost 10 and I am just learning about this. As an infant we legitimately thought she was "early" to hold her head up and it seemed she was nodding at us. She had other signs as well. We were also told she had colic or it was related to GERD. One time when she was about a year old the doctor commented on her crying a lot and we said "Yeah she's a colicky one" and the doctor said "Colic only lasts the first few months" and didn't say anything else so we thought she was just ignorant vs the other four doctors (and family members) that said the opposite. Our child was also developing normally until about age 2 when she had a harsh regression. She was diagnosed with "non-verbal autism" even though she had been previously speaking phrases as well as signing ASL regularly. We are working with a government agency to get help but it's been arduous even after 8 years. We still have not had any tests done but routine blood tests, even when we had been worried about seizures the pediatricians would deter us saying "I don't think so....I think she's just having a tantrum.." and things like "Well we could do an EEG but they are very costly and it would take time to get her in and we need more evidence of a problem...I don't think she is having seizures"/"It's not worth it" since our child would have to be put to sleep to undergo an EEG by the time we questioned seizures. I never saw videos like this at the time. I just had learned there are many different kinds of seizures and some of her reflexes sometimes would mimic the rigidity while she would also be crying in pain. YES we took her into the ER for this several times and at one of the best pediatric hospitals in the country. We spent long nights there without any testing done and only a shrug and a several thousand dollar medical bill each time. Some children with developmental disabilities and low cooperation have died needlessly due to medical neglect in many cases. This needs to change! It's hard enough being a parent to a special needs child. Why must we also fight the doctors that are supposed to want to help us???!
Wow I can't believe how you were treated. What country are you in to be treated this poorly? My son is one month old and had what was thought to be a seizure when he was 3 days old. We were still in hospital at the time due to other complications... My son had a brain scan done that day, then was scheduled for a formal EEG the next day, a couple days after that he got an ultrasound on his head and a couple weeks after he had an MRI done. They only found a slight abnormality believed to be of no significance. And that's not to mention all the blood tests and other culture tests done, he was put on an iv drip for 24hrs and closely monitored in a high care NICU ward. During his first week of life in the NICU the staff did do everything they could think of even if it was just a precaution and non of this was at our expense. Reading about other countries health system make me appreciate my country so much. I really hope you get the answers you need soon, good luck
My baby is almost 6 months had head dropping spasms. Is it ok to just to do ketogenic diet and wait and see or should the baby get Vigabatrin treatment right away? Is Vigabatrin safe for babies? My pediatrician suggested that there is no brain damage and the baby is very healthy. The pediatrician neurologist said there is no pain the baby experiences when the spasms come. She just cries because she feels like she lost control. But my daughter cries after each head drop like she is lost. I'm lost as to what I should do.
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.
It's one thing to have a diagnosis, another to find out the REAL reason why. Many babies who have these episodes can be traced back to the vaccines they "insist they need" at birth. It's written right on the vaccine insert for heaven's sake......along with many many more side effects. Please research before giving your babies ANY of these awful poisonous shots they simply do not need!! Lots of information is out now, no excuse for ignorance anymore.
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
@@tyler8744 Yes. Intravenous mercury is absorbed very differently then ingested mercury- it crosses the blood brain barrier, while ingested mercury (like in seafood) can harm the liver but is accumulatively damaging rather than immediately damaging. The CDC has no intravenous mercury allowance for newborns, and Vax schedules allow a level that is 200x higher than the maximum level set for a preemie just a few weeks younger (when a preemie is tube fed, it requires intravenous mercury to administrate tube nutrition). Sadly it is assumed as safe because very few studies have been done. Read Robert W. Sears work for more info. He advocates spreading out vaccinations for better tolerance. I'm so sorry for your loss.
True. How the hell would anyone know if serious or not. If u ask other doctors , some say kids grow out of it. Ofcourse if it persists then it's an issue. But overanalyzig a 3 mnth baby to fill doctor's pockets is stupid. Stay alert that's all . Just hear the background music and visuals. Scaryig ppl.
It's very scary to have a child with IS. You'll know if it's serious or not. My daughter started having them right before 3 months old. They started out very light and over the course she would scream in between the spasms. It was the hardest year of my life. Then the medications they want your baby on are no joke and can (and probably will) cause more medical issues.
@@bluelagoon1875 is there any evidence to support its from vaccines? I'm not denying there might be a link, but I need to research this if it were true
@@rumit9946 not to the emergency. The emergency has nothing to do to them. But ur own doctor who will refer u to a neurolog. It is good to be aware of everything
yall say this but will be looking stupid when you are charged for neglect because you ignored clear signs. Theres a complete difference with your child doing it once every blue moon and periodically during the day. come on now
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
She takes Trileptal and Keppra brand name. She takes this 2X a day. Trileptal alone was not enough to stop the seizures, so we had to add Keppra. But we always had to keep it name brand because the generic did not do well for her. She has tonic-clonic seizures. However, this has been controlled with her medicine. Her medicine is based on her weight so we watch that closely. She is a happy and healthy little girl despite her condition. We taken her to the specialist 1-2 times a year to do MRI/other tests to monitor her brain and orher organs. Her condition is mild, but we still watch her like a hawk. ❤
You know for years I've been saying that there is something wrong when these babies doing this and the parents are told they'll out grow it.. this is very different then infant startle reflex which comes natural to the baby out grows that ... many mother on this site for years would look for help because they felt there was something else and their doctor didn't get it.... if you have a feeling something is wrong with your baby .. then most likely something is wrong. Remember you know your baby more then anyone else , so always go by your instincts and dont give up until you find an answer. . You are your baby's voice........
Peditricians (??) (You know what I mean!!!) tend to treat mothers like idiots! Either they treat like hysterical psychopaths or they discriminate them because they don't breastfeed!!! 😠 😠
My son did this, and we were given every BS explanation in this video. Lo and behold, 6 years old, I was finally the one who realized that he likely had a perinatal stroke. Speech apraxia, physical delays, cognitive delays, sensory processing, attention deficit, etc. He's six now. He is our first. For anybody having kids: if you think something is wrong, don't take "he'll grow out of it" as an excuse.
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🥰
@@actionaction88Psalm 41:3: "The Lord sustains him on his sickbed; in his illness you restore him to full health" Mark 11:23-24 - “For assuredly, I say to you, whoever says to this mountain, ‘Be removed and be cast into the sea,’ and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says. Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.” 1 Peter 2:24: "'He Himself bore our sins' in His body on the cross, so that we might die to sins and live for righteousness; 'by His wounds you have been healed.'” Isaiah 40:29: “He gives strength to the weary and increases the power of the weak.” Psalm 147:3: “He heals the brokenhearted and binds up their
@@actionaction88Father, in the name of Jesus I come to you on behalf of my son and I want to say thank you for the gift of this child I have dedicated this child to you and he belongs to you so I take authority on every demonic spirit that brings sickness trouble and confusion and lies into his life to move out of his life now permanently and I decree over him right now he is the man of God
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.
You don’t really. That’s why this isn’t usually noticed until 4 months or later because by then, the head nods due to lack of neck strength shouldn’t be happening.
I wish doctors/pediatricians would take parents more seriously. I probably didn’t sleep for a month after I had my baby and I knew something was wrong with her… I expressed my concerns to her pediatrician & I even went to a childrens hospital. They told me that I looked tired and that I probably had postpartum depression. They didn’t even do anything for my baby or at least tell me what they could or couldn’t do. She was bleeding and I eventually switched her formula. I was still trying to breastfeed at the time but I had to stop so I could recover and try to sleep again because I just couldn’t anymore so my Ob prescribed me medication. After her formula switch things got better and I wasn’t as stressed so I was finally able to get some sleep 1-2 hrs a day and it went up with time to 3 hrs then 4, 5, 6. Anyways, yes I was tired. Yes my body was giving out. I was weak and couldn’t carry my 7 lb baby anymore. I needed help myself. Yes I did. But they made it seem like I was overreacting and that I probably had depression when in reality I had my own sleeping issues but the stress about my baby’s health wasn’t helping so I needed answers! They just blamed me & said I needed to get help for my depression. & that my baby was okay as is.
My 9 month old granddaughter had a traumatic birth she ended up with a brain injury. About 3 weeks ago she was doing this on and off for a week local Drs said she was just doing too much, I think all drs should be shown what this is
Hiee ..I am from India and I have twins baby boy ...one of them has a problem of seizures ...it starting from when he was just 10 month old ..now he is 2 and half years old but seizures can't stop it comes again and again ..we know how hard it is for baby and their parents also ..I can't imagine..god bless that all child who suffering from that typs of problems
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.
@@TheElevateYourselfPodcastmy daughter is hitting all her milestones and going into kindergarten Side affects of ACTH are excessive eating and they might fall behind because of how they are feeling while on treatment but again every outcome is different depending on why the child is having the IS
I am actually worried of my son. I noticed that his hand is moving uncertainly same as his legs while his asleep it happened from a day he was born and his 1month now.we can't visit a doctor because of this pandemic and worried financially. I takes videos on him.
One important reason that babies must be diagnosed early, is to rearrange immunizations. Because, some of them can cause high fevers or can even cause seizures in a baby predisposed to seizures. Some doctors will put off immunisations if the baby is not going to day care. Also, getting the baby early childhood services through the school district is necessary. Many babies have low muscle tone and will be speech delayed. Also, it gives the family services from people that understand what you are experiencing.
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
@@aghalibejane7309 The incidense is 1.5-4.5 children per 10.000. That is considered rare in my opinion. Also often (not always) infantile spasms happen in relation to a syndrome.
It may also help you to know that my son, in hindsight was having infantile spasms in the last month of pregnancy. I went to the ob/gyn several times, because I would not feel the baby moving for several hours. It would be proceeded by rhythmic bumbing in one place for around 20 minutes. The heart beat would be audible, but movement would not occur in the usual manner. The birth was uneventful and natural, but I felt he was not latch on correctly. Was hospitalised a week later with mastitis and my son had to be swaddled to keep from hitting the sides of the bassinet. He was large and his development continued to be slow. The pediatrician I had, who I that I thought he was having epilepsy at 1 month, laughed it off to me being a new mother and him a lazy boy.
yeah that's so scary, these babies are so cute and adorable but they may never become functional adults if not treated early. so painful to watch them suffer, i hope all of them have managed to receive the right treatment before any permanent brain damage has been done.
My 2nd cousin as a baby had a these small seizures for a month or two but the NHS didn’t do anything until he died at 8 weeks :( that’s when they confirmed a few days later that he was suffering from certain deficiency’s causing the disorder but I was younger and don’t remember anything apart from painting the Urn with my 1st cousins completely oblivious on what was going to be put in it.
Tuberous Sclerosis, one syndrome that can have Infantile Spasms as a symptom, can be partially diagnosed by shining a woods light (black light) to detect hypopigmented spots on the skin. Most GP's and pediatricians have them to find lice. Also, there can be a cluster of white hair. These can be on the forehead along the hairline or anywhere on the body. Also, a cluster of brown spots.
Thank you very much for your comment regarding the cluster of white hairs! My daughter was recently born and is diagnosed with Tuberous Sclerosis and my wife has such a patch. Maybe there is a connection and we will doible check it. Thank you for your comment! :)
@@ivanhorvat9248 I am so sorry, but I read on the Tuberous Sclerosis Association page in America that they can now do genetic testing for the genes that cause the syndrome. Your wife can get this test and maybe other tests to see if she carries this gene. Also, I read there are new drugs to treat symptoms. They have come a long ways with testing and treating since my son was diagnosed in 1981. It is amazing and you have hope that your child can do well. Be very strong and even pushy to get all the information you can and don't give up. Despite all the problems my child had, I could not have loved him more. Of course, I fought all the way to the end to have him treated with respect and to try anything that may give him even one day of happiness. Even his school goals were " to have a reason to smile and laugh everyday".
If this is what these are my daughter is 8 years old now and use to have these quite often. She is perfectly happy and healthy now….. how dangerous are these frfr??
I am pretty much going through this right now. Yet I have to wait 1 week for an EEG to confirm what I suspect Taken my daughter 2 times to the hospital in 1 week. I feel helpless to take away her pain. Yet hell I will fight to the ends of the earth.
According them she doesn't go blue or stop breathing they can wait till Tuesday. 2 neither of the two er doctors anx pediatrician think its infantile seizures but just ticks. Meanwhile my daughter suffering
@@gwenpurcell5567 I am pretty much going through this right now. Yet I have to wait 1 week for an EEG to confirm what I suspect Taken my daughter 2 times to the hospital in 1 week. I feel helpless to take away her pain. Yet hell I will fight to the ends of the earth.
What happened ? I am a new father and dreading this as my baby does some faces also. He is super gassy but am worried and in Canada due to covid it’s impossible to get an appointment fast
@@manilynR08 he had just the vigabatrin not steroids . He had to have a higher dose for the set amount of time . He made amazing eye contact and after the medication it stopped . He is doing amazing but doesn't talk much . Non verbal autistic with ADHD but proving the hospitals wrong . I'm so proud but am eager for him to be old enough to sort his peripheral vision out not long now . Still on his normal seizure meds :) had multiple issues with the hospitals so just trust your motherly instincts :)
@@anniruss1768 hi, have you heard of the GAPS protocol ? If you haven't I highly recommend you looking into it and implementing at least the first phase followed by a keto/paleo diet. Most likely you are dealing with major food aversions too, and that first week or 2 is really heartbreaking and hard, but the neurological benefits after this first phase are life altering, my son was nonverbal at 5.5 years old, in and out of hospital in either a locked in or seizing state - too many issues to state here, so many times I had to contemplate his funeral/our funeral = my son now has an amazing future to look forward too, his a chatterbox when I was told he would never talk, his sensory issues are all greatly improved, he is learning, reading, and loving life. After years and thousands of $$ in therapy that got us nowhere, taking a risk on the GAPS protocol I finally met my son
@@anniruss1768 hi my 7 month baby is on vigabatrin and torpiramate but still having seizures so he was on 5ml now got put on 8ml to try to stop the seizure how was with ur baby did your baby start on low dose then whent up on the doze?? It has stop olot but not completely just would like ur opinion please I’m so scared and sad 😢 please let me know your experience with vigabatrin thank you 🙏🏻 god bless you and your baby
@@madelinemorales6789 it's took a couple days to stop fully , if your worried call the specialist and see if they need to up again . (If the seizure still happens ) He was super sleepy but when he did sleep was always shallow so would wake over tiny sounds . He was on keppra too so might have been affect from both . Make sure you trust yourself , if you don't think somethings wright then tell them and remember you know your child best :) Low dose didn't stop his so they put on higher dose . Keep vids and note down times and how long they last . We got told a siezure should never past my ore than 5 mins so if it gets to 4 send to hosp a&e . Hope this helps , hope you and your baby get sorted and are siezure free soon .
my daughter doing same things from 4 months to 2 years I always make videos and consultant with pediatrics near me but they always say that's nothing disturb ur child she do like this and after 2 years when it becomes strong seizures then they diagnose. Now she has development delay and autistic features. I am going through with really bad condition because of doctors irresponsibility
More parents should be made aware. I have 5 kids and have never heard of this. My kids didn’t have it but what if they had? I would have thought it was just jerking
I was looking for info on absent seizures because my son is having the random eye/face movements and zoning out. Now I think he might have these too… :(
I don’t know much but as a med student I would say video the episodes, which I’m sure most parents do. The doctors who turn you concerns away even then are truly truly truly negligent 😡
My son is 6 now but he had infantile spasms. I'm not 100% sure when they started but I believe it was when he was around 4 months old. It was diagnosed as reflux at first. Then at his 6 month well check I had developmental concerns and the nurse practitioner sent us to a neurologist. He was 7 months when he had his first EEG and was diagnosed with seizures and given medication. BUT they weren't diagnosed correctly and the medication didn't work. A month later he went back for another EEG. They said they had gotten worse and increased his medication. After 2 or 3 days I Just knew something else had to be done and I took him to a children's hospital. There he was admitted and put on a 24hr video EEG and within an hour or so they told us it was infantile spasms and that he needed a different medication. They started the injections in the hospital and kept him a few days until the shipment of injections got to our house and then sent us home. I continued to give him the injections and the infantile spasms were gone after about 3 or 4 days and after finishing the 28 days of injections they never came back. He was 8 months when they were finally diagnosed correctly. He now has significant developmental delays
Hi Alisha, my daughter has this every few seconds. May I know which hospital and Dr did you get the correct diagnosis from? What is the name of the 28days shots? Thank you so much.
Our daughter had infantile spasms. It ruined her life. She is now 12 and has very bad epilepsy. We found out two weeks ago there has been two tumors that cause all this and has been there since birth. It went missed for 12 years three hospitals and lack of imaging. They said it was genetic when she was born and never wanted to look farther into it. Our fourth opinion figure it all out. As a constantly heart broken father for our daughter, please parents do imaging if you think something isn’t right! My god bless all of you in the epilepsy community 💜
I noticed repetitive head nods to my 9-month old sister a few times, i already told my mother about this but she just said its nothing. How do i tell her about this? I just wanna be cautious.
Thank you for putting this video out there. I would have never thought something was wrong. Just assumed my newborn is cute by developing their own ticks and habits since their personality is starting to shining through. Now I know what to pay attention for. Thank you for being the eye opener that I needed. ❤❤❤❤ Really informative. Thank you!
My 16 years old epileptic son have started his seizures like this. it get worst with time in his case. Last year he had a status epilepticus and was in coma for one month. All epilepsy is different.
My baby has been doing this since he was born, but only when he hears a loud sudden noise. How do I know if it’s for sure Infantile Spasms? Also, does if count if my baby is sleeping and jumps like that?
@@maryamkhosa5790 he is absolutely fine now, it was benign sleep myoclonus. And Dr said if it's happening during sleep then there is no problem. He stopped doing it around 4-5 months
My brother does this every day but usually when he stretches but sometimes he just randomly lifts his legs up and we think it’s normal. He’s 4 months btw
Hi everyone, I'm writing from Turkey. My son has been diagnosed with West Syndrome and he is 4 years old and we haven't found a solution yet. If anyone knows about his treatment, please get back to me.
@@arasbulut7752 selam kardesim gecmis olsun iyilesme yok nobetler devam ediyor.sizin ki siddetli mi detayli bilgi alisverisi yapmak istersen iletisim numarasi paylasayim.gecmis olsun
I’m a mommy myself and I’m epileptic too. That was my biggest fear during my pregnancy too just 7 years ago. I’m grateful my son isn’t epileptic though I still fear it as his also autistic. I sometimes cry over it too. He doesn’t even talk either
you may want to visit with a prenatal geneticist before deciding to have children, not everyone should have children in the traditional manner. Adoption is often the best choice in cases of inherited conditons. There has to be a genectic component to this as there are cases of identical twins having IS. It is simply not researched enough due to its rarity.
My child started to have this spams, I sent the video to the pediatrican and she told us it was reflux... we weren't confortable with this diagnose so we went in the same week to the neuropediatrician and he was diagnosed with west syndrome.
Mine just stopped his medication, and slowly the spasms are coming back but theres “nothing they can do” Instead we just gotta watch and see him suffer from it until they decide to give him another course
Did your child have it with the steroids or with just the meds ? I got told they have to carry on the course until they stop all together. It must be treated . Also that they can up the dose or of you didn't try with steroids apparently it's the gurentee for the meds to be most effective . Hope your little one is ok :) hope this helps
They do an ekg in the hospital after you have the baby and if the brain waves were abnormal they would definitely say something about it before being discharged but it’s best to talk with your pediatrician and record anything you want to question to you’re pediatrician
I ignored these symptoms when my son was born and now I am facing the consequences. He is 5 years old and not normal like other children and under medications for seizures.
Its not your fault. My son is turning 5 yrs may, i knew he had IS when he was 3 months before the doctors knew because of doing alot of research. My son can’t walk or talk . He is physically like 4 months old now. He had seizures every day several time. We do a lot therapy training but still he’s developing very slow. Now he’s seizures free and I want to do more research Iam thinking he might have cerebral palsy too. Does your son have Cerebral palsy or genetic mutation?
@@alishatalia8075 his physical development is like any other normal child but intellectually he is like a 2 year old in a 5 year old body. Seizures aren't responding to allopathic medications.
@@AjayGupta-ne1rz oh sorry to hear that all medicin not working for your son. My son tried all medications but the last try sabrilex work for him. I mean even my son is physically fine but intellectually very delayed.
Unfortunately, my son was just yesterday diagnosed with West syndrome (infantile spasm). Eyes rolling up in series, tears, stiffness, apathy. But after sleeping, he was his normal happy self. Next day, another spasm. We firstly called and then immediately went to the emergency, prepared to stay there. Got another nasty spasm at the doc's office. After EEG check, they told us, he has West syndrome. Instantly, they put him on Sabril. More tests coming up today and it seems, we will stay in hospital for some time. Me and my husband are so scared. I want to cry, whenever I see his cute smiling face. I am so scared about his future and how hard it will be. I don't feel strong enough. Development delays, low IQ, frequent attacks, disability, possible death...
So happy it is nothing serious ,but for me everything in this video became our worst nightmare my son now is 27 and has had epilepsy all his life ,its so scary to watch and no drugs can stop it ,that seems to be his life ,sadly
My son has something similar and the doctors say it’s habit but I’m his mum and I know he’s in pain when it happens as he becomes unresponsive and out of breath . I just want a diagnosis for him but my gp keeps saying it’s nothing even tho I asked for a second opinion. It’s really hard to even see the gp due to the pandemic
Yeah I agree with the comments.. take him to childrens hospital or another doctor. My son has epilepsy and his seizures are very brief. If you blink you miss it. We went to the ER when we noticed them getting frequent. He was having about 100 a day. They told us hes fine just follow up with his dr. The next day after ER visit he had a 45min continuous seizure. If you aren't happy with the answer or Dr keep looking.
Video his episodes or go to your GP's office and sit there so they can see the episodes. The screaming after the jerking sounds so scary, but it is a reflex not pain.
my son had a brue in June 2023, since then struggled to eat. coughing started, choking started, gasping started etc. bought a preemie nipple. hes been different since. idk where to go. pedi says reflux or throat spasm. hes now 3 months it got better with the nipple but started getting worse today. i feel alone. please anyone tell me if you had this problem too? he just did gasp... and almost as if he was holding his breath. he does pretty good at pushing the bottle out or turning his head its not hard to tell if he wants the bottle out... so i know its not that. i been having to watch him breathe, listen to him etc. making sure he stays awake while eating. idk what else im doing wrong. they still dont know what causes brue. idk what i did to cause it? they said it just happens... just happens my ass i wanna know what i did wrong. i explained in very tiny details.. i wrote everything down. 😢i feel helpless
My first son (now 19 yo) was diagnosed with infantil spasms at the early age of 2 months old! He used to be a healthy baby when suddenly those spasms surprised everyone...we, his parents, pediatricians, neurologists... We were all confused about that diagnosis with out "any" explanation. It took me more than a year of reasearch, reading lots of scientific papers, and observations to conclude that my healthy baby boy had been neurologicaly affected by a nasty vaccine reaction.... Obviously, we suspended vaccination and now, 19 years later, he is a healthy teen, with no more neurological symptoms or saecuela... Thanks God!!
@@lightworker4813 This Is all true, an it Is my son's case, and my son's true testimony... I don't need to lie, If you don't belive feel free... I'm just sharing because it really happened...the neurologists accepted It too... The vaccine was the complete responsible...AND now my son is healthy...think what you want... But yo need to do an honest reasearch, without rigid paradigms.
My son had infantile spasm at the 3 months of age I noticed the clusters of spasms and shoot a video and show it to doctor then he instantly recognised that it is infantile spasms... For me that time was very challenging they started steroids which is very harmful for 3 months old baby then within one month I completely shifted to homeopathic treatment and trust me within 5 to 6 months his condition become very good.. now he is 5 years old and he is completely fit and fine and very clever and sharp in study... Pls take care of your babies and notice every little changes in your babies 🙏
Hello ..my baby is 3months old now .after the vaccine i noticed something.like reflex .but when i watched this video ..i was suddenly scared.what will i do.😥😭
Oh god my baby does this extremely often. I was always told that it was just his startle reflux. But he does it soo much he can’t even sleep. It wakes him up constantly if he isn’t swaddled. But he hates being swaddled
My baby does it too but he is epileptic so we know it IS something related to seizure.. We are waiting for an EEG scedule to confirm it is infantile spasme or not. If u are not sure, get ur baby an EEG test..
I think if your baby is having these symptoms its always better to err on the aide of caution and go to the doctor/ER. But understand that 'infantile spasms,' (which is serious) and 'infantile shuddering' (which is essentially harmless) look very similar. So, its important to take these symptoms seriously, but dont panic until you know what it is (like we did lol).
Same happened with me, my daughter doing same things from 4 months to 2 years I always make videos and consultant with pediatrics near me but they always say that's nothing disturb ur child she do like this and after 2 years when it becomes strong seizures then they diagnose. Now she has development delay and autistic features. I am going through with really bad condition because of doctors irresponsibility
So sorry you and your daughter went through this. They used to put Mercury as a preservative in immunization serums. Even in the influenza (flu) vaccines!
I'm here looking for answers for my nephew/my niece's son. He is having these type of episodes since birth. Now at two months old his head circumference is measuring abnormally large. While in utero my niece was having seizures spontaneously that a reason was never diagnosed. After giving birth, she no longer does but her son is. This is devastating as she is not getting any answers. Doctors run test and just send her home saying either they aren't sure, or they will have to run more tests. Does anyone have any suggestions. I feel like time is if essence and I am just desperately trying to find things to consider. After viewing this I believe it is definitely considerable. Thank you all for sharing
@Oxy Cat They have yet to get an MRI unfortunately. They have begun seeing a therapist that helps him swallow... I'm not certain what that is all about as my niece has been overwhelmed and becoming reclusive. Nonetheless I am here, doing what I can to help find answers. Thank you for your response. I'll read up on it and pass along any information that might be considered. GOD bless you, have a wonderful day
My baby had this and it was because of increasing of lactic acid in her body because she already has some brain disorders but I hope she will be fine because they did many tests when she was at the hospital but I hope that this won't happen again. I wasn't sure that it was spasm but because of this helpul video I took a video for her and it was spasm and I took her to emergency.
We are currently dealing with this with our 3 month old baby. We have been told by one neurologist that it's probably reflux. But we were never referred to a gastroentologist at the children's hospital we have been going to. He also wasn't put on any medication for it. The spasms have continued. We spoke to our pediatrician who strongly disagrees with the neurologist because he doesn't have symptoms or signs of reflux and because of how frequent these are happening and the variation of the type of spasms we are seeing. We have two referrals going to two other children's hospitals now thanks to our pediatrician. I am confident this is not reflux. He has been dealing with these for the last month, almost two months now. I am so thankful this video is out there to help parents.
Keeping your little one in my prayers, my grandson was diagnosed with West Syndrome at 4 months , my daughter video taped his happening and showed his Neuro team , they did a 24 hr EEG and diagnosed him . Sending positive vibes and hugs
@@manny2door Hello ,my grandson is doing ok , after his hemispherectomy in May of 22 he was doing great we saw very few spasms as well as focal seizures, after January of this year he was recovering from Covid and his spasms started all over again as well as Myoclonic seizures, he's being seen by his Neuro team at UNC and is being weened away from one med to start a stronger one , my grandson was born with hydrocephalus, CVI hypsarrthymia ,West Syndrome and epilepsy,when he was diagnosed with West syndrome he wasn't responding to meds that's why they removed his right side of his brain. He's been a fighter since day 1 , hopefully these new meds will work for him . Sending love hugs and prayers to you and yours
Omg I’m here Ben say like the video says it can be easily overlooked. I’m so sorry for the parents who are experiencing this with their babies my heart goes out to you. I’m just now learning that my 6 mo might have this but staying positive til I know for sure. And sending hugs to everyone
Ja, wenn das damals , als meine Tochter 6 Monate alt war, jemand erkannt hätte.....so vergingen 6 Jahre bis zur passenden Diagnose.......... Und wir waren bei so vielen Ärzten, haben so oft von ihren Problemen erzählt, sie wurde so oft untersucht.........
My first son experienced this type of seizure. It was as if someone was jumping out n scaring him that his body tightened n loosen and then he cried afterwards....please to anyone experiencing these particular symptoms Don't stop at one Dr. visit. We had to get a second opinion. He's 16 yrs old now.
Hey I just found this video. Would you please check out my video? Of my baby? She is 4 now and I don't see her doing these things anymore. But I was so scared and so concerned about this back then. I took her to get tested and at the time they couldn't find anything. But it's still concerning.
Is this something that a cops can grow or of? My daughter did this and other things as well when she was younger. She had major physical developmental delays. Didn’t crawl until she was one and didn’t walk until over 1 1/2 years old. She’s fine now. But I always was concerned about her behavior but of course things were overlooked
My 6 week old son does the body crunching all the time. My OB referred me to a paediatrician in regard to a different type of episode we are afraid may be epilepsy. I have epilepsy as does my husband so we wouldn’t be surprised if baby boy did too, thankfully we are both first aid certified and know seizure first aid for ourselves and infants. But still I had no idea this was even a thing I thought it was just reflexes
The other episodes he’s having happen every other day and happen before feedings during feeding and after feedings. He gets burped really good. And it doesn’t happen all the time, but his entire body seizes up and his entire body turns a deep red and he basically convulses while keeping his back arched back, and milk spewing out of his nose and mouth if it’s mid feed or after feed. We changed bottle nipples, burp him more frequently, but nothing has changed, it still happens. And my doctor does NOT think it’s reflux she thinks it’s seizures because it’s not constantly occurring it’s every other day. Sometimes twice in a single day, but not always. I’m going to film it next time it happens. It’s terrifying
@@NohasKitchen I’m not sure if it’s the same with babies as it is with adults, but it completely depends on the type of seizure. As seizure first aid can be different depending on the type of seizure happening
😢 that’s what all doctors tell me I’m sad his legs spasm and arms flap sometimes he can’t eat like he’s choking and wants to puke he’s 8 weeks old . Help me I’m in Washington state
Thank you ...I had seen couple of videos of nephew crunching his arms and feet like that how they showed in video..later he was diagnosed to be autistic... Can this Infantile Spasms cause autism?
Sorry, this is serious misinformation you have written. The scientists and public health officials have studied for years to become specialists in their fields. No one is brainwashed. I am grateful that we have vaccines available to help us.
@@solitairecatnaps4444 actually the science doesn't support what you are saying - there is no evidence that vaccines have saved a single life, or prevented a single case of disease, they *have* on the other hand caused many deaths, and created many diseases within the vaccinated population.
Hi everyone I'm Abel from Philippines and I have son suffering from infantile spasm and he is now 4 year's old its a grate pain for me seeing his condition kindly help us pls..the problem is we are lack of financially to his medication.
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.
How is your baby now?age of ur baby?
How is ur baby now ?
I am panicked too
@@bijayaghosh2312 My baby is 2 months old and now she is perfectly fine. They did an EECG and a brain scan, and they also run some blood tests, and she is perfectly fine! I also showed a video of her "spasms" to doctors and they said that they are normal
@@bijayaghosh2312 She actually has reflux xD
Praying for all the little angels while holding my healthy princess in my arms. May every child be blessed with good health...
Amen 🙏🏾
Amen may they all be healed 🙏
@Baby Hater86 Shame on you...
@Baby Hater86 Go to hell, these little angels are in pain and you liked it😠😠😠 may you face the same...
Amen
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
First time soon to be dad here! Hope your baby all the health 🙏
Hahaha hang in there mate . I go through the same and a lot of sleepless nights
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! ❤
May i ask when were you diagnosed? What wear your medications
@@sahararshad5044 A lot of my medications werent rlly for children, or the dosages were high. i cannot remember most of the medications since it was very long time ago, but i do remember taking some kind of pills. Since they werent for children, i vomited a lot because of them.
😊0😊@@sahararshad5044
Were you diagnosed with autism too
@@jerrys5424you were
This is is a real condition but the tone of the video is shameful. This video made my wife panic in her sleep deprived state from caring for our child. Frankly, using such methods to spread awareness of a condition is fearmongering. The music, the questions all of it. Spread awareness by being informative not by causing attention grabbing panic.
If you see this and don’t panic your baby will grow up neurologically impaired. The point IS to instill fear. Many people still don’t fear diabetes and default treatment even though it’s life threatening. This condition is life altering. If you are not scared you are careless. Be scared so you are aware.
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.
@@nellielee2915 what tests were being done and how is your grand son now
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
Literally scares me because what if i have kids and don't realize what's happening in time
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Infantile spasms are from birth to 3 years so if there older it's more likely to be seizure if it's happening similar
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.
My baby this type patient
@ suruchi...I'm sorry to hear this. I hope there is a cure for your baby. Sending love to you both.💕
Specialists always told me IS is rare. But as a mother with a child that had IS and joining Facebook support groups, it doesn't seem rare at all unfortunately.
I think it is so important to spread this as first parents would not know this...I told GP about our child who is in pain as I know she is they said everything is normal..breathing grunting having pain before poo, after eating always grunting. All.normal...I am.looking for another doctor...
My son had it and I diagnosed him and the previous hospitals tried to tell me he had the hiccups absolutely not they tried to medically gaslight me and tell me I was being dramatic but I wasn’t having it and because I didn’t have a medical degree everyone was very condescending until I took my baby to one hospital and the nurse said wow I think your right mama (she wasn’t even supposed to do that) but it felt like the weight of the world lifting off my shoulders because someone beloved me! and they immediately did an eeg and I was!
I hate that medical professions feel like they just know everything and we can’t possible know anything because we don’t have a degree. At the end of the day i caught it within 24 hours no brain damage occurred and my baby is 3 now and perfectly fine but it was a scary time
New dad here: so Zoe got the rota vaccine (8 weeks on Tuesday morning). In the afternoon she had moro reflex (looks like this video) almost every time I laid her down.
Called 112, took her to the hospital where she spent 3 nights with the mom.
Had her eeg, blood tests, urine tests all that stuff, really cool dutch doctors looking at her telling us it's moro reflex, but because I was freaked out of the infintile spasms I could not be soothed. The neurologist said its impossible for her to have epileptic infintile spasms at the age of 2 months.
The day after it was less, the fay after even less and now its almost not happening. I read a bunch of research papers about infintile spasms (both benign and epileptic), understood how super low the odds are of them being this.
And now I read that a bunch of kids had sensitive startle reflex after 8 week vaccine. The few little hair I have left on my had could have retained its non-white color had I not been freaked out to death by this video.
Advocate for your kids, but know it can be 50 other things before it's infintile spasms that will cause your kid to be a vegetable for the rest of their life. Overtreatment is also a real danger (read up on benign myoclism of early infancy for example).
Take care of yourselves and best of health for your kids
PS: even though i think it was cause by the vaccine as a side effect, im not a moron and will be giving her all the vaccines she is recommended by the modern medicinal expertise and be thankful we live in a time these are available for us for free
You are LITERALLY a moron when you child had a bad effect to a vaccine and you continue to inject them with more. Was saying I’m not a moron supposed to make you look like the cool, educated , play by the rule book dad? You’ve got to be kidding me! They have y’all brainwashed good! Don’t want to say no because it causes conflict but would risk your child’s health. God forbid anything else happens. Don’t forget they can still get sick with what the vaccine supposedly prevents them from.
May Allah Pak bless every child with a healthy and happy life... Ameen
Tell him to save Gaza first
@@pratyushshukla9362 We don't need to tell Allah what to do. He is Almighty, creator of this universe. He knows everything, but you illiterate people are denying the reality...
Ameen
What is wrong with you, freak@@pratyushshukla9362
@@fairytale8424if we don’t need to tell him what to do then why did you tell him what to do in your first comment? Why bother praying at all if you can’t ask him for help?
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.
watching this right now as a medical student on my peds rotation!!!
Yea I went to my doctor about the movements and she said it’s normal. I literally HATE how she tells me EVERY CONCERN I HAVE FOR MY BABY IS JUST “normal behavior” like cool my affordable healthcare is paying you to nudge me away. Fucking plendid. Science, medical, tech, it’s constantly CHANGING and THESE DOCTORS NEED TO RESEARCH. Just because you got your doctorates doesn’t mean you can’t continue to learn new and tested information/studies.
80% of pediatricians miss this diagnosis upon presentation to clinic
@@jessicaa5791 Same here Jessica
How would one tell the difference between a spasm and a shudder. I’m reading a shudder is benign but spasms can obviously be very dangerous.
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.
Can u please help me ..same case with our baby
@Patience 🌹♥️ may Allah protect every mankind from every health problems .. ameen
What is the problem
Hi I hope you and your child is good. We have the same spazm with our son.Just want to know is your daugter speaking or walking now?
Hi, my baby does this when he hears something loud, is it the same thing?
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.
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!
Mi bebé empezó a los 4 meses con estos movimientos y mi corazón de madre me dijo que algo no estaba bien, ella dejó de comer y reírse, la lleve de emergencia con su pediatra y me dijo que algo pasaba con ella y la refirió inmediatamente a emergencia, esa misma noche le hicieron un EEG y le diagnosticaron los espasmos infantiles, gracias a Dios se le quitaron le recetaron prednisone por un mes pero quedó con un diagnóstico de epilepsia, aún está en tratamiento, tiene 14 meses y problemas con su desarrollo psicomotor, estamos en estudios de genética para tener un diagnóstico exacto, gracias a Dios ha tenido un buen equipo de médicos en el Hospital de la Universidad de New Mexico
Don't vaccines no mass
How is your daughter today?
¿Cómo se encuentra tu bebé ahora?
Как твой ребёнок сейчас?
Great now i think my baby is having seizures every 2 min
Right hate the internet
@@misslady9224 same here
Ikr !!! Wtf
Ugh same
Same here
My child is almost 10 and I am just learning about this. As an infant we legitimately thought she was "early" to hold her head up and it seemed she was nodding at us. She had other signs as well. We were also told she had colic or it was related to GERD. One time when she was about a year old the doctor commented on her crying a lot and we said "Yeah she's a colicky one" and the doctor said "Colic only lasts the first few months" and didn't say anything else so we thought she was just ignorant vs the other four doctors (and family members) that said the opposite. Our child was also developing normally until about age 2 when she had a harsh regression. She was diagnosed with "non-verbal autism" even though she had been previously speaking phrases as well as signing ASL regularly.
We are working with a government agency to get help but it's been arduous even after 8 years. We still have not had any tests done but routine blood tests, even when we had been worried about seizures the pediatricians would deter us saying "I don't think so....I think she's just having a tantrum.." and things like "Well we could do an EEG but they are very costly and it would take time to get her in and we need more evidence of a problem...I don't think she is having seizures"/"It's not worth it" since our child would have to be put to sleep to undergo an EEG by the time we questioned seizures. I never saw videos like this at the time. I just had learned there are many different kinds of seizures and some of her reflexes sometimes would mimic the rigidity while she would also be crying in pain. YES we took her into the ER for this several times and at one of the best pediatric hospitals in the country. We spent long nights there without any testing done and only a shrug and a several thousand dollar medical bill each time.
Some children with developmental disabilities and low cooperation have died needlessly due to medical neglect in many cases. This needs to change! It's hard enough being a parent to a special needs child. Why must we also fight the doctors that are supposed to want to help us???!
Wow I can't believe how you were treated. What country are you in to be treated this poorly? My son is one month old and had what was thought to be a seizure when he was 3 days old. We were still in hospital at the time due to other complications... My son had a brain scan done that day, then was scheduled for a formal EEG the next day, a couple days after that he got an ultrasound on his head and a couple weeks after he had an MRI done. They only found a slight abnormality believed to be of no significance. And that's not to mention all the blood tests and other culture tests done, he was put on an iv drip for 24hrs and closely monitored in a high care NICU ward. During his first week of life in the NICU the staff did do everything they could think of even if it was just a precaution and non of this was at our expense. Reading about other countries health system make me appreciate my country so much. I really hope you get the answers you need soon, good luck
You neef to sue
Have you considered Rett syndrome?
Omgg currently in the ER bc my baby started having these spasms, she also holds her head up at 1 month
My baby is almost 6 months had head dropping spasms. Is it ok to just to do ketogenic diet and wait and see or should the baby get Vigabatrin treatment right away? Is Vigabatrin safe for babies? My pediatrician suggested that there is no brain damage and the baby is very healthy. The pediatrician neurologist said there is no pain the baby experiences when the spasms come. She just cries because she feels like she lost control.
But my daughter cries after each head drop like she is lost. I'm lost as to what I should do.
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.
It's one thing to have a diagnosis, another to find out the REAL reason why. Many babies who have these episodes can be traced back to the vaccines they "insist they need" at birth. It's written right on the vaccine insert for heaven's sake......along with many many more side effects. Please research before giving your babies ANY of these awful poisonous shots they simply do not need!! Lots of information is out now, no excuse for ignorance anymore.
How is your daughter doing? My 5 month old just got diagnosed.
@@adman4566 what were the symptoms?
@@adman4566how is your 5 month old now doing?
F
You can definitely see how this can be mistaken for normal baby behavior.
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
I am incredibly sorry for your loss. How long after his two month shots did he pass away?
Thank you..14 days after 2 month shots.. Do you think it could be related?!
@@tyler8744 hi if they have a seizure do they respond when you touch or speak to them ?
@@tyler8744 Yes. Intravenous mercury is absorbed very differently then ingested mercury- it crosses the blood brain barrier, while ingested mercury (like in seafood) can harm the liver but is accumulatively damaging rather than immediately damaging.
The CDC has no intravenous mercury allowance for newborns, and Vax schedules allow a level that is 200x higher than the maximum level set for a preemie just a few weeks younger (when a preemie is tube fed, it requires intravenous mercury to administrate tube nutrition). Sadly it is assumed as safe because very few studies have been done.
Read Robert W. Sears work for more info. He advocates spreading out vaccinations for better tolerance. I'm so sorry for your loss.
Too sad to hear that.hug you
I feel like this just scared the absolute shit out of me for no god damn reason
True. How the hell would anyone know if serious or not. If u ask other doctors , some say kids grow out of it. Ofcourse if it persists then it's an issue. But overanalyzig a 3 mnth baby to fill doctor's pockets is stupid. Stay alert that's all . Just hear the background music and visuals. Scaryig ppl.
It's very scary to have a child with IS. You'll know if it's serious or not. My daughter started having them right before 3 months old. They started out very light and over the course she would scream in between the spasms. It was the hardest year of my life. Then the medications they want your baby on are no joke and can (and probably will) cause more medical issues.
@@mamabear5588 I am sorry to hear your family had to go through that. How is your daughter now?
@@bluelagoon1875 is there any evidence to support its from vaccines? I'm not denying there might be a link, but I need to research this if it were true
@@mamabear5588 how’s your daughter now I have a baby boy with is
I bet this video created hundreds of anxious parents who are rushing to the nearest emergency departments as we speak
And thats good.
Gyh Ach not for the doctors working the emergency
@@rumit9946 not to the emergency. The emergency has nothing to do to them. But ur own doctor who will refer u to a neurolog. It is good to be aware of everything
"A little knowledge is a dangerous thing."
yall say this but will be looking stupid when you are charged for neglect because you ignored clear signs. Theres a complete difference with your child doing it once every blue moon and periodically during the day. come on now
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
How she get cured ?
She didn’t, but she takes medicines that stop her seizures.
@@GingerSnappx which medicine she is taking & which type of seizures....prays for your daughter may she get cured soon
What medicine is she on ?
She takes Trileptal and Keppra brand name. She takes this 2X a day.
Trileptal alone was not enough to stop the seizures, so we had to add Keppra. But we always had to keep it name brand because the generic did not do well for her.
She has tonic-clonic seizures. However, this has been controlled with her medicine. Her medicine is based on her weight so we watch that closely.
She is a happy and healthy little girl despite her condition. We taken her to the specialist 1-2 times a year to do MRI/other tests to monitor her brain and orher organs. Her condition is mild, but we still watch her like a hawk. ❤
You know for years I've been saying that there is something wrong when these babies doing this and the parents are told they'll out grow it.. this is very different then infant startle reflex which comes natural to the baby out grows that ... many mother on this site for years would look for help because they felt there was something else and their doctor didn't get it.... if you have a feeling something is wrong with your baby .. then most likely something is wrong. Remember you know your baby more then anyone else , so always go by your instincts and dont give up until you find an answer. . You are your baby's voice........
Peditricians (??) (You know what I mean!!!) tend to treat mothers like idiots! Either they treat like hysterical psychopaths or they discriminate them because they don't breastfeed!!! 😠 😠
My son did this, and we were given every BS explanation in this video. Lo and behold, 6 years old, I was finally the one who realized that he likely had a perinatal stroke. Speech apraxia, physical delays, cognitive delays, sensory processing, attention deficit, etc.
He's six now. He is our first.
For anybody having kids: if you think something is wrong, don't take "he'll grow out of it" as an excuse.
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🥰
Which scriptures did you use?
@@actionaction88Psalm 41:3: "The Lord sustains him on his sickbed; in his illness you restore him to full health"
Mark 11:23-24 - “For assuredly, I say to you, whoever says to this mountain, ‘Be removed and be cast into the sea,’ and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says. Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.”
1 Peter 2:24: "'He Himself bore our sins' in His body on the cross, so that we might die to sins and live for righteousness; 'by His wounds you have been healed.'” Isaiah 40:29: “He gives strength to the weary and increases the power of the weak.” Psalm 147:3: “He heals the brokenhearted and binds up their
@@actionaction88Father, in the name of Jesus I come to you on behalf of my son and I want to say thank you for the gift of this child I have dedicated this child to you and he belongs to you so I take authority on every demonic spirit that brings sickness trouble and confusion and lies into his life to move out of his life now permanently and I decree over him right now he is the man of God
Love it! Thanks for responding
so happy for you! our daughter was not so lucky
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.
What were the signs? I’m so worried
How was ur baby
Lets all pray for this babys🙏
Meri beti ko bhi same yesi hi ho rahi hai 4 months baby
How can you tell the difference between the head nods and just regular head nods due to lack of neck strength
You don’t really. That’s why this isn’t usually noticed until 4 months or later because by then, the head nods due to lack of neck strength shouldn’t be happening.
I wish doctors/pediatricians would take parents more seriously. I probably didn’t sleep for a month after I had my baby and I knew something was wrong with her… I expressed my concerns to her pediatrician & I even went to a childrens hospital. They told me that I looked tired and that I probably had postpartum depression. They didn’t even do anything for my baby or at least tell me what they could or couldn’t do. She was bleeding and I eventually switched her formula. I was still trying to breastfeed at the time but I had to stop so I could recover and try to sleep again because I just couldn’t anymore so my Ob prescribed me medication. After her formula switch things got better and I wasn’t as stressed so I was finally able to get some sleep 1-2 hrs a day and it went up with time to 3 hrs then 4, 5, 6. Anyways, yes I was tired. Yes my body was giving out. I was weak and couldn’t carry my 7 lb baby anymore. I needed help myself. Yes I did. But they made it seem like I was overreacting and that I probably had depression when in reality I had my own sleeping issues but the stress about my baby’s health wasn’t helping so I needed answers! They just blamed me & said I needed to get help for my depression. & that my baby was okay as is.
So what did your baby had ??
My 9 month old granddaughter had a traumatic birth she ended up with a brain injury. About 3 weeks ago she was doing this on and off for a week local Drs said she was just doing too much, I think all drs should be shown what this is
Hiee ..I am from India and I have twins baby boy ...one of them has a problem of seizures ...it starting from when he was just 10 month old
..now he is 2 and half years old but seizures can't stop it comes again and again ..we know how hard it is for baby and their parents also ..I can't imagine..god bless that all child who suffering from that typs of problems
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.
Any updates on the effects and treatment?
Milk starts coming out of my baby nose and mouth while sleeping before hand. Is that a sign?
@@TheElevateYourselfPodcastmy daughter is hitting all her milestones and going into kindergarten
Side affects of ACTH are excessive eating and they might fall behind because of how they are feeling while on treatment but again every outcome is different depending on why the child is having the IS
@@rosalynnfranklin2141I’m not sure, that sounds more like aspirating
I agree. Keep pushing until one finds the answers. Better to be told the EEG is fine than not getting it
I am actually worried of my son. I noticed that his hand is moving uncertainly same as his legs while his asleep it happened from a day he was born and his 1month now.we can't visit a doctor because of this pandemic and worried financially. I takes videos on him.
If your worried take to a&e these are serious and meet treatment otherwise cause so many issues
Hello??
Same is happening to my baby.
Did you see any doctor, plz help.
@@itishreemadhusmita1372 go to a&e these are so serious please if this is concerning you do it
It’s normal when they sleep.
One important reason that babies must be diagnosed early, is to rearrange immunizations. Because, some of them can cause high fevers or can even cause seizures in a baby predisposed to seizures. Some doctors will put off immunisations if the baby is not going to day care. Also, getting the baby early childhood services through the school district is necessary. Many babies have low muscle tone and will be speech delayed. Also, it gives the family services from people that understand what you are experiencing.
Yep happened with my daughter got told it's reflux a year later had a massive seizure was diagnosed with epilepsy.
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
It is a rare disease. So I doubt you see it a lot.
Not true, ain't rare
@@aghalibejane7309 The incidense is 1.5-4.5 children per 10.000. That is considered rare in my opinion. Also often (not always) infantile spasms happen in relation to a syndrome.
@@Persason is babies become abnormal after this disease
It may also help you to know that my son, in hindsight was having infantile spasms in the last month of pregnancy. I went to the ob/gyn several times, because I would not feel the baby moving for several hours. It would be proceeded by rhythmic bumbing in one place for around 20 minutes. The heart beat would be audible, but movement would not occur in the usual manner. The birth was uneventful and natural, but I felt he was not latch on correctly. Was hospitalised a week later with mastitis and my son had to be swaddled to keep from hitting the sides of the bassinet. He was large and his development continued to be slow. The pediatrician I had, who I that I thought he was having epilepsy at 1 month, laughed it off to me being a new mother and him a lazy boy.
yeah that's so scary, these babies are so cute and adorable but they may never become functional adults if not treated early. so painful to watch them suffer, i hope all of them have managed to receive the right treatment before any permanent brain damage has been done.
My 2nd cousin as a baby had a these small seizures for a month or two but the NHS didn’t do anything until he died at 8 weeks :( that’s when they confirmed a few days later that he was suffering from certain deficiency’s causing the disorder but I was younger and don’t remember anything apart from painting the Urn with my 1st cousins completely oblivious on what was going to be put in it.
How very sad! I’m so sorry!
If your doctor, specialist or pediatrician won’t listen… find another!!
Tuberous Sclerosis, one syndrome that can have Infantile Spasms as a symptom, can be partially diagnosed by shining a woods light (black light) to detect hypopigmented spots on the skin. Most GP's and pediatricians have them to find lice. Also, there can be a cluster of white hair. These can be on the forehead along the hairline or anywhere on the body. Also, a cluster of brown spots.
Thank you very much for your comment regarding the cluster of white hairs! My daughter was recently born and is diagnosed with Tuberous Sclerosis and my wife has such a patch. Maybe there is a connection and we will doible check it. Thank you for your comment! :)
@@ivanhorvat9248 I am so sorry, but I read on the Tuberous Sclerosis Association page in America that they can now do genetic testing for the genes that cause the syndrome. Your wife can get this test and maybe other tests to see if she carries this gene. Also, I read there are new drugs to treat symptoms. They have come a long ways with testing and treating since my son was diagnosed in 1981. It is amazing and you have hope that your child can do well. Be very strong and even pushy to get all the information you can and don't give up. Despite all the problems my child had, I could not have loved him more. Of course, I fought all the way to the end to have him treated with respect and to try anything that may give him even one day of happiness. Even his school goals were " to have a reason to smile and laugh everyday".
If this is what these are my daughter is 8 years old now and use to have these quite often. She is perfectly happy and healthy now….. how dangerous are these frfr??
My baby has been seizures in
How was your daughter treated?
I am pretty much going through this right now. Yet I have to wait 1 week for an EEG to confirm what I suspect
Taken my daughter 2 times to the hospital in 1 week. I feel helpless to take away her pain. Yet hell I will fight to the ends of the earth.
I work in a hospital as a nursing assistant and it’s bullshit you’re waiting a week for that. We are able to do those on the spot.
According them she doesn't go blue or stop breathing they can wait till Tuesday. 2 neither of the two er doctors anx pediatrician think its infantile seizures but just ticks. Meanwhile my daughter suffering
@@gwenpurcell5567 I am pretty much going through this right now. Yet I have to wait 1 week for an EEG to confirm what I suspect
Taken my daughter 2 times to the hospital in 1 week. I feel helpless to take away her pain. Yet hell I will fight to the ends of the earth.
@@mariacarmo3013 is she okay?
What happened ? I am a new father and dreading this as my baby does some faces also. He is super gassy but am worried and in Canada due to covid it’s impossible to get an appointment fast
I'm in tears this brings it all back 🖤 my son had these took so many hospital trips until they listened instead of a normal seizure
how is you son now?
@@manilynR08 he had just the vigabatrin not steroids . He had to have a higher dose for the set amount of time . He made amazing eye contact and after the medication it stopped . He is doing amazing but doesn't talk much . Non verbal autistic with ADHD but proving the hospitals wrong . I'm so proud but am eager for him to be old enough to sort his peripheral vision out not long now . Still on his normal seizure meds :) had multiple issues with the hospitals so just trust your motherly instincts :)
@@anniruss1768 hi, have you heard of the GAPS protocol ?
If you haven't I highly recommend you looking into it and implementing at least the first phase followed by a keto/paleo diet. Most likely you are dealing with major food aversions too, and that first week or 2 is really heartbreaking and hard, but the neurological benefits after this first phase are life altering, my son was nonverbal at 5.5 years old, in and out of hospital in either a locked in or seizing state - too many issues to state here, so many times I had to contemplate his funeral/our funeral = my son now has an amazing future to look forward too, his a chatterbox when I was told he would never talk, his sensory issues are all greatly improved, he is learning, reading, and loving life. After years and thousands of $$ in therapy that got us nowhere, taking a risk on the GAPS protocol I finally met my son
@@anniruss1768 hi my 7 month baby is on vigabatrin and torpiramate but still having seizures so he was on 5ml now got put on 8ml to try to stop the seizure how was with ur baby did your baby start on low dose then whent up on the doze?? It has stop olot but not completely just would like ur opinion please I’m so scared and sad 😢 please let me know your experience with vigabatrin thank you 🙏🏻 god bless you and your baby
@@madelinemorales6789 it's took a couple days to stop fully , if your worried call the specialist and see if they need to up again . (If the seizure still happens )
He was super sleepy but when he did sleep was always shallow so would wake over tiny sounds . He was on keppra too so might have been affect from both .
Make sure you trust yourself , if you don't think somethings wright then tell them and remember you know your child best :)
Low dose didn't stop his so they put on higher dose . Keep vids and note down times and how long they last . We got told a siezure should never past my ore than 5 mins so if it gets to 4 send to hosp a&e .
Hope this helps , hope you and your baby get sorted and are siezure free soon .
My son use to go stiff and his teeth would clinch together but Doctors never said anything was wrong with him. He is ok now.
My daughter is 4 months til money and when I change her goes stiff should I be worried abkut that!
Дай бог вам здоровья🙏
my daughter doing same things from 4 months to 2 years I always make videos and consultant with pediatrics near me but they always say that's nothing disturb ur child she do like this and after 2 years when it becomes strong seizures then they diagnose. Now she has development delay and autistic features. I am going through with really bad condition because of doctors irresponsibility
More parents should be made aware. I have 5 kids and have never heard of this. My kids didn’t have it but what if they had? I would have thought it was just jerking
I was looking for info on absent seizures because my son is having the random eye/face movements and zoning out. Now I think he might have these too… :(
If your baby has a seizure, record a video footage and talk to le doctor
Yeah. We watched the video. We don't need a play by play.
I don’t know much but as a med student I would say video the episodes, which I’m sure most parents do. The doctors who turn you concerns away even then are truly truly truly negligent 😡
My son is 6 now but he had infantile spasms. I'm not 100% sure when they started but I believe it was when he was around 4 months old. It was diagnosed as reflux at first. Then at his 6 month well check I had developmental concerns and the nurse practitioner sent us to a neurologist. He was 7 months when he had his first EEG and was diagnosed with seizures and given medication. BUT they weren't diagnosed correctly and the medication didn't work. A month later he went back for another EEG. They said they had gotten worse and increased his medication. After 2 or 3 days I Just knew something else had to be done and I took him to a children's hospital. There he was admitted and put on a 24hr video EEG and within an hour or so they told us it was infantile spasms and that he needed a different medication. They started the injections in the hospital and kept him a few days until the shipment of injections got to our house and then sent us home. I continued to give him the injections and the infantile spasms were gone after about 3 or 4 days and after finishing the 28 days of injections they never came back. He was 8 months when they were finally diagnosed correctly. He now has significant developmental delays
Terrible. I hope he will catch up on development. ❤️
Hi Alisha, my daughter has this every few seconds. May I know which hospital and Dr did you get the correct diagnosis from? What is the name of the 28days shots? Thank you so much.
What is injection name?
Like what development delays?
Ohhh my goodness. This just broke my heart.
Our daughter had infantile spasms. It ruined her life. She is now 12 and has very bad epilepsy. We found out two weeks ago there has been two tumors that cause all this and has been there since birth. It went missed for 12 years three hospitals and lack of imaging. They said it was genetic when she was born and never wanted to look farther into it. Our fourth opinion figure it all out. As a constantly heart broken father for our daughter, please parents do imaging if you think something isn’t right! My god bless all of you in the epilepsy community 💜
I noticed repetitive head nods to my 9-month old sister a few times, i already told my mother about this but she just said its nothing. How do i tell her about this? I just wanna be cautious.
How’s the baby now?
How is the baby doing now?
Did you get her consulted? How is she now?
Thank you for putting this video out there. I would have never thought something was wrong. Just assumed my newborn is cute by developing their own ticks and habits since their personality is starting to shining through. Now I know what to pay attention for. Thank you for being the eye opener that I needed. ❤❤❤❤ Really informative. Thank you!
I also have a baby brother.....God bless these babies😭😭
My 16 years old epileptic son have started his seizures like this. it get worst with time in his case. Last year he had a status epilepticus and was in coma for one month. All epilepsy is different.
My baby has been doing this since he was born, but only when he hears a loud sudden noise. How do I know if it’s for sure Infantile Spasms? Also, does if count if my baby is sleeping and jumps like that?
My baby also has same symptoms. What about the current status?
@@maddysworld9756how is he doing now? And what was it
@@maryamkhosa5790 he is absolutely fine now, it was benign sleep myoclonus. And Dr said if it's happening during sleep then there is no problem. He stopped doing it around 4-5 months
My brother does this every day but usually when he stretches but sometimes he just randomly lifts his legs up and we think it’s normal. He’s 4 months btw
My son also, I thought it was normal?!
Please reply how is your baby now
How is ur brother @ emir beganovic
Plz reply
Hi everyone, I'm writing from Turkey. My son has been diagnosed with West Syndrome and he is 4 years old and we haven't found a solution yet. If anyone knows about his treatment, please get back to me.
Please lmk if you find out anything
@@1Lilbike sick treatment maybe topamax 👍
Sabrilيوجد دواء اسمه
Kardeşim nasıl oldu çocuğun gelişme varmı ,benimde 15 aylık kızıma infital spazm teşhisi konuldu
@@arasbulut7752 selam kardesim gecmis olsun iyilesme yok nobetler devam ediyor.sizin ki siddetli mi detayli bilgi alisverisi yapmak istersen iletisim numarasi paylasayim.gecmis olsun
I feel like my baby has this he shakes a lot and stares before going to sleep and has been sleeping a lot and eating less
Tlk to doc about it or health visitor . Could check for infection ?
I used to have spasms and was diagnosed with Epilepsy at 21. Having a seizure or seizures while pregnant is one of my biggest fears.
My mom has Epilepsy becareful
@@tamikajanzen9455 Thanks, girl. Hopin for the best when that day comes!
I’m a mommy myself and I’m epileptic too. That was my biggest fear during my pregnancy too just 7 years ago. I’m grateful my son isn’t epileptic though I still fear it as his also autistic. I sometimes cry over it too. He doesn’t even talk either
you may want to visit with a prenatal geneticist before deciding to have children, not everyone should have children in the traditional manner. Adoption is often the best choice in cases of inherited conditons. There has to be a genectic component to this as there are cases of identical twins having IS. It is simply not researched enough due to its rarity.
@@nicoleimmerheiser6429 Awesome feedback! Thanks!
My child started to have this spams, I sent the video to the pediatrican and she told us it was reflux... we weren't confortable with this diagnose so we went in the same week to the neuropediatrician and he was diagnosed with west syndrome.
Mine just stopped his medication, and slowly the spasms are coming back but theres “nothing they can do”
Instead we just gotta watch and see him suffer from it until they decide to give him another course
Did your child have it with the steroids or with just the meds ?
I got told they have to carry on the course until they stop all together. It must be treated .
Also that they can up the dose or of you didn't try with steroids apparently it's the gurentee for the meds to be most effective . Hope your little one is ok :) hope this helps
They do an ekg in the hospital after you have the baby and if the brain waves were abnormal they would definitely say something about it before being discharged but it’s best to talk with your pediatrician and record anything you want to question to you’re pediatrician
I ignored these symptoms when my son was born and now I am facing the consequences. He is 5 years old and not normal like other children and under medications for seizures.
Its not your fault. My son is turning 5 yrs may, i knew he had IS when he was 3 months before the doctors knew because of doing alot of research. My son can’t walk or talk . He is physically like 4 months old now. He had seizures every day several time. We do a lot therapy training but still he’s developing very slow. Now he’s seizures free and I want to do more research Iam thinking he might have cerebral palsy too. Does your son have Cerebral palsy or genetic mutation?
@@alishatalia8075 his physical development is like any other normal child but intellectually he is like a 2 year old in a 5 year old body. Seizures aren't responding to allopathic medications.
@@AjayGupta-ne1rz oh sorry to hear that all medicin not working for your son. My son tried all medications but the last try sabrilex work for him. I mean even my son is physically fine but intellectually very delayed.
Unfortunately, my son was just yesterday diagnosed with West syndrome (infantile spasm).
Eyes rolling up in series, tears, stiffness, apathy. But after sleeping, he was his normal happy self.
Next day, another spasm. We firstly called and then immediately went to the emergency, prepared to stay there.
Got another nasty spasm at the doc's office.
After EEG check, they told us, he has West syndrome. Instantly, they put him on Sabril.
More tests coming up today and it seems, we will stay in hospital for some time.
Me and my husband are so scared. I want to cry, whenever I see his cute smiling face.
I am so scared about his future and how hard it will be. I don't feel strong enough.
Development delays, low IQ, frequent attacks, disability, possible death...
Thanks for the alert, super helpful to know what to look out for
Hi My son is taking medication for epilepsy. I can still see these symptoms, I can see the first sign when he wakes up. Th
Id give my life up for my son to have a normal life
So happy it is nothing serious ,but for me everything in this video became our worst nightmare
my son now is 27 and has had epilepsy all his life ,its so scary to watch and no drugs can stop it ,that seems to be his life ,sadly
Can someone please explain to me the difference between an infantile spasm and a myoclonic seizure?
My son as them there no joke there under control now but it was scary he had over 20 a hour and wasn't the same baby
My son just had 20 in a 3 min period 🥲
My son has something similar and the doctors say it’s habit but I’m his mum and I know he’s in pain when it happens as he becomes unresponsive and out of breath . I just want a diagnosis for him but my gp keeps saying it’s nothing even tho I asked for a second opinion. It’s really hard to even see the gp due to the pandemic
Try taking him to a Children's Hospital.
Go to another doctor.
Yeah I agree with the comments.. take him to childrens hospital or another doctor. My son has epilepsy and his seizures are very brief. If you blink you miss it. We went to the ER when we noticed them getting frequent. He was having about 100 a day. They told us hes fine just follow up with his dr. The next day after ER visit he had a 45min continuous seizure. If you aren't happy with the answer or Dr keep looking.
Go to a good Child specialist.
Video his episodes or go to your GP's office and sit there so they can see the episodes. The screaming after the jerking sounds so scary, but it is a reflex not pain.
my son had a brue in June 2023, since then struggled to eat. coughing started, choking started, gasping started etc. bought a preemie nipple. hes been different since. idk where to go. pedi says reflux or throat spasm. hes now 3 months it got better with the nipple but started getting worse today. i feel alone. please anyone tell me if you had this problem too? he just did gasp... and almost as if he was holding his breath. he does pretty good at pushing the bottle out or turning his head its not hard to tell if he wants the bottle out... so i know its not that. i been having to watch him breathe, listen to him etc. making sure he stays awake while eating. idk what else im doing wrong. they still dont know what causes brue. idk what i did to cause it? they said it just happens... just happens my ass i wanna know what i did wrong. i explained in very tiny details.. i wrote everything down. 😢i feel helpless
My first son (now 19 yo) was diagnosed with infantil spasms at the early age of 2 months old! He used to be a healthy baby when suddenly those spasms surprised everyone...we, his parents, pediatricians, neurologists... We were all confused about that diagnosis with out "any" explanation. It took me more than a year of reasearch, reading lots of scientific papers, and observations to conclude that my healthy baby boy had been neurologicaly affected by a nasty vaccine reaction....
Obviously, we suspended vaccination and now, 19 years later, he is a healthy teen, with no more neurological symptoms or saecuela... Thanks God!!
It has nothing to do with vaccines. Stop spreading misinformation.
@@lightworker4813 This Is all true, an it Is my son's case, and my son's true testimony... I don't need to lie, If you don't belive feel free... I'm just sharing because it really happened...the neurologists accepted It too... The vaccine was the complete responsible...AND now my son is healthy...think what you want... But yo need to do an honest reasearch, without rigid paradigms.
How u treated ur baby ?pls reply
Agre!!! Too many vaccines given at once to a newborn is dangerous!!
I think the medical field realized this.
What vaccine? I’m worried damage has been done
My son had infantile spasm at the 3 months of age I noticed the clusters of spasms and shoot a video and show it to doctor then he instantly recognised that it is infantile spasms... For me that time was very challenging they started steroids which is very harmful for 3 months old baby then within one month I completely shifted to homeopathic treatment and trust me within 5 to 6 months his condition become very good.. now he is 5 years old and he is completely fit and fine and very clever and sharp in study... Pls take care of your babies and notice every little changes in your babies 🙏
please share the diet you used?
Oh my heart. Father god bless these babies.
God is female.
@Alex I met Her.
I'm telling you...God is a female. She appeared in a vision.
No
@@chriskope7980 9
Hello ..my baby is 3months old now .after the vaccine i noticed something.like reflex .but when i watched this video ..i was suddenly scared.what will i do.😥😭
My baby does some of these only when he Wakes up from sleep
And how is your baby now ? I noticed mine does this when I pick him up and try to move him he’s 2 months
@@alantegarcia9397 my baby also doing the same.... Please reply how is your baby now
My 5mo gets an EEG done in April 😢❤ say some prayers. He’s been having seizures.
What was the result?
@@bintnafse1805he was diagnosed with a very rare form of epilepsy 💔 Dravet Suyndrome
Oh god my baby does this extremely often. I was always told that it was just his startle reflux. But he does it soo much he can’t even sleep. It wakes him up constantly if he isn’t swaddled. But he hates being swaddled
My baby does it too but he is epileptic so we know it IS something related to seizure..
We are waiting for an EEG scedule to confirm it is infantile spasme or not.
If u are not sure, get ur baby an EEG test..
@@Tukanggambarklaten I’ve already called and scheduled with his doctor right after seeing this. I don’t wanna take any chances.
The Uzumakikay how is ur baby now
The Uzumakikay @how is ur baby now
@@amankaura1522 he’s fine. He’s stopped doing it. It really was just his startle reflex. He was just taking longer to grow out of it.
My 1 year old baby since his birthday same condition plz pray for him
😔😪 GOD BLESS ALL THE BABIES THAT SUFFER OF THAT
I think if your baby is having these symptoms its always better to err on the aide of caution and go to the doctor/ER. But understand that 'infantile spasms,' (which is serious) and 'infantile shuddering' (which is essentially harmless) look very similar. So, its important to take these symptoms seriously, but dont panic until you know what it is (like we did lol).
Thank you so much for mentioning this. Literally staring at my son about to cry wondering how the next course of our life will be
It was the same as my daughter. He's 3 now. All that time also fighting against cerebral palsy
How did u end it
Taking regular medication from the doctor
Same happened with me, my daughter doing same things from 4 months to 2 years I always make videos and consultant with pediatrics near me but they always say that's nothing disturb ur child she do like this and after 2 years when it becomes strong seizures then they diagnose. Now she has development delay and autistic features. I am going through with really bad condition because of doctors irresponsibility
So sorry you and your daughter went through this.
They used to put Mercury as a
preservative in immunization serums.
Even in the influenza (flu) vaccines!
I'm here looking for answers for my nephew/my niece's son. He is having these type of episodes since birth. Now at two months old his head circumference is measuring abnormally large. While in utero my niece was having seizures spontaneously that a reason was never diagnosed. After giving birth, she no longer does but her son is. This is devastating as she is not getting any answers. Doctors run test and just send her home saying either they aren't sure, or they will have to run more tests. Does anyone have any suggestions. I feel like time is if essence and I am just desperately trying to find things to consider. After viewing this I believe it is definitely considerable. Thank you all for sharing
@Oxy Cat They have yet to get an MRI unfortunately. They have begun seeing a therapist that helps him swallow... I'm not certain what that is all about as my niece has been overwhelmed and becoming reclusive. Nonetheless I am here, doing what I can to help find answers. Thank you for your response. I'll read up on it and pass along any information that might be considered. GOD bless you, have a wonderful day
Please, if the condition was diagnosed, tell me because I have a child with the same condition and so far it has not been medically diagnosed
Then how u know it’s this if it hasn’t been medically diegnosed
Best to video your child's episodes and show you doctor.
Hi I am a pediatrician can I use the video as a teaching material ?
Yes, please do! There are more resources at infantilespasms.org/
My baby had this and it was because of increasing of lactic acid in her body because she already has some brain disorders but I hope she will be fine because they did many tests when she was at the hospital but I hope that this won't happen again. I wasn't sure that it was spasm but because of this helpul video I took a video for her and it was spasm and I took her to emergency.
My child is going through... Now he is of 8 yaers old and life is going to hell... Plz pray
We are currently dealing with this with our 3 month old baby. We have been told by one neurologist that it's probably reflux. But we were never referred to a gastroentologist at the children's hospital we have been going to. He also wasn't put on any medication for it. The spasms have continued. We spoke to our pediatrician who strongly disagrees with the neurologist because he doesn't have symptoms or signs of reflux and because of how frequent these are happening and the variation of the type of spasms we are seeing. We have two referrals going to two other children's hospitals now thanks to our pediatrician. I am confident this is not reflux. He has been dealing with these for the last month, almost two months now. I am so thankful this video is out there to help parents.
Keeping your little one in my prayers, my grandson was diagnosed with West Syndrome at 4 months , my daughter video taped his happening and showed his Neuro team , they did a 24 hr EEG and diagnosed him . Sending positive vibes and hugs
@@chris_autumn1550 how is your grandson doing if you don’t mind me asking?! 😓
@@manny2door Hello ,my grandson is doing ok , after his hemispherectomy in May of 22 he was doing great we saw very few spasms as well as focal seizures, after January of this year he was recovering from Covid and his spasms started all over again as well as Myoclonic seizures, he's being seen by his Neuro team at UNC and is being weened away from one med to start a stronger one , my grandson was born with hydrocephalus, CVI hypsarrthymia ,West Syndrome and epilepsy,when he was diagnosed with West syndrome he wasn't responding to meds that's why they removed his right side of his brain. He's been a fighter since day 1 , hopefully these new meds will work for him . Sending love hugs and prayers to you and yours
@@chris_autumn1550 thank you for the update! I will keep you and your family in my prayers! I appreciate that!!
Omg I’m here Ben say like the video says it can be easily overlooked. I’m so sorry for the parents who are experiencing this with their babies my heart goes out to you. I’m just now learning that my 6 mo might have this but staying positive til I know for sure. And sending hugs to everyone
Ja, wenn das damals , als meine Tochter 6 Monate alt war, jemand erkannt hätte.....so vergingen 6 Jahre bis zur passenden Diagnose..........
Und wir waren bei so vielen Ärzten, haben so oft von ihren Problemen erzählt, sie wurde so oft untersucht.........
My first son experienced this type of seizure. It was as if someone was jumping out n scaring him that his body tightened n loosen and then he cried afterwards....please to anyone experiencing these particular symptoms Don't stop at one Dr. visit. We had to get a second opinion. He's 16 yrs old now.
Is he ok now is he healthy now??? God bless him
Yes, we monitor him as much as we can.
Hey I just found this video. Would you please check out my video? Of my baby? She is 4 now and I don't see her doing these things anymore. But I was so scared and so concerned about this back then. I took her to get tested and at the time they couldn't find anything. But it's still concerning.
Who type of tratment of this symptons
What did treatment on this???
Is this something that a cops can grow or of? My daughter did this and other things as well when she was younger. She had major physical developmental delays. Didn’t crawl until she was one and didn’t walk until over 1 1/2 years old. She’s fine now. But I always was concerned about her behavior but of course things were overlooked
What was she diagnosed with?
Is epilepsy genetic? My husband is epileptic but it was from a TBI and we're about 11 weeks.. he's so worried he'll ruin our child's life
He's currently 6 months old and I'm even more concerned as we have a diagnosis for his father and have seen this in our little boy.
My 6 week old son does the body crunching all the time. My OB referred me to a paediatrician in regard to a different type of episode we are afraid may be epilepsy. I have epilepsy as does my husband so we wouldn’t be surprised if baby boy did too, thankfully we are both first aid certified and know seizure first aid for ourselves and infants. But still I had no idea this was even a thing I thought it was just reflexes
The other episodes he’s having happen every other day and happen before feedings during feeding and after feedings. He gets burped really good. And it doesn’t happen all the time, but his entire body seizes up and his entire body turns a deep red and he basically convulses while keeping his back arched back, and milk spewing out of his nose and mouth if it’s mid feed or after feed. We changed bottle nipples, burp him more frequently, but nothing has changed, it still happens. And my doctor does NOT think it’s reflux she thinks it’s seizures because it’s not constantly occurring it’s every other day. Sometimes twice in a single day, but not always. I’m going to film it next time it happens. It’s terrifying
what are thise first aid for seizure
@@NohasKitchen I’m not sure if it’s the same with babies as it is with adults, but it completely depends on the type of seizure. As seizure first aid can be different depending on the type of seizure happening
@@thelovelybrain7066 дай бог вам здоровья 🙏
@@thelovelybrain7066 how’s your baby now?
😢 that’s what all doctors tell me I’m sad his legs spasm and arms flap sometimes he can’t eat like he’s choking and wants to puke he’s 8 weeks old . Help me I’m in Washington state
Thank you ...I had seen couple of videos of nephew crunching his arms and feet like that how they showed in video..later he was diagnosed to be autistic...
Can this Infantile Spasms cause autism?
Sorry, this is serious misinformation you have written. The scientists and public health officials have studied for years to become specialists in their fields. No one is brainwashed. I am grateful that we have vaccines available to help us.
@@solitairecatnaps4444 actually the science doesn't support what you are saying - there is no evidence that vaccines have saved a single life, or prevented a single case of disease, they *have* on the other hand caused many deaths, and created many diseases within the vaccinated population.
Thank you for showing this. It is hard to know if baby having one.
Very informative video
Hi everyone I'm Abel from Philippines and I have son suffering from infantile spasm and he is now 4 year's old its a grate pain for me seeing his condition kindly help us pls..the problem is we are lack of financially to his medication.
God bless these precious babies ❤️