Infantile Spasms - seizures
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- Опубліковано 26 вер 2024
- Updates on Aliyah: aliyahvsdiagnos...
2013 Video • Infantile Spasms as a ...
I had to video record aliyah's seizures by doctor's command, they needed to see it from the start to the end. She was eating finger foods then all of a sudden her spasms came.
My daughter was 13 months old when she was first diagnosed with IS. (Though her infantile spasms began when she was around 8-10 months, the nurses here wouldn't give her an appt because they thought she had night terrors instead, leaving my daughter to be untreated for 4-5 months) When she turned 16mths, her neurologist Dr.Alsayouf told us it was gone - thanks to medication but when we got our second opinion when she was 23mths old with Dr.Joshi, she told us Aliyah STILL has Infantile Spasms. Dr. Alsayouf told us to go with what Dr. Joshi recommends , to start up with steroids again.......
Please know if any parents of IS children have questions about Aliyah and her development please contact me at lizettehnj@gmail.com. I know together we can help each other cope and give each other ideas about how to best raise our children and how to help them.
It must be a heart breaking experience. Hope the baby is doing fine. My heart goes out to you.
Thank you, these videos are really useful while studying for post grad medical exams. It's very subtle & can see how it could be missed. Much better than reading in books & trying to imagine.
AWW THANKS!!!! YES SHE IS A KEEPER! UNFORTUNATELY - SHE IS STILL BATTLING WITH HER (now) 2 rare and severe types of EPILEPSY. SHE IS SUCH A TROOPER!!! SHE REALLY IS!
As I find spare time I have been trying to update her blog. Currently I am in the month of Nov.2011...3more months of catch up to go!
I am just trying to tell her story so that other parents can understand that they are not alone.For some time I have felt that way and am still learning to cope.
slawsonftw: thank you for sticking up for me. Aliyah has had hundreds of seizures before this and I never wanted to catch it on video or pictures its memories one never wants to remember but verbally describing it to medical professionals doesnt help so they ask for videos.. because of this one video we were taken seriously. And I wanted to post this video to help other parents what to look out for, because epilepsy is so subtle. I hate epilepsy, and continue to fight for my baby girl Aliyah.
Thank you ...such videos provide help to medical students in understanding them . I hope aliyah is fine now.
How is little Aaliyah now please ? X
Thanku
How is she doing now
Hi 99suzan, IT WAS MEDICALLY NECESSARY TO VIDEOTAPE ALL OF ALIYAH'S CLUSTER SEIZURES. During that time she had several clusters a day,her neurologist never caught it in person, which is why a recording was needed to time how far apart the seizures are from each other and how long the cluster lasted.I have a Microbiology degree so I do sanitize my children's hands before meal time. She was finger eating since she regressed on how to use utensils due to her ongoing seizures.
Parents know when something is not right. Her eyes are a giveaway of this. I hope that she is doing much better.
My little boy is currently undergoing assessment for motor tics and developmental delay and we too have been told to capture his tics on video as he may not do them during the short drs appointments. He has also recently had a possible seizure so I am looking up youtube videos to see if any of them are similar to my son's episode. Thank you posting this and please ignore all the idiots who have no idea how useful these movies can be for diagnosis or how heartbreaking it is to go through this.
What a beautiful little girl. I hope she is doing ok💖💕
what my son does when he has them also. I'll pray for you all. it hurts so much to watch
Paige Minton
How is your son now my twins also do this head fall I am from South Africa and it is very painful for me to see them going through this worst part the doctors said they are fine
thank you for trying to help. It hasn't gone away she is 3 now. Every case is different but the outcome is usually negative. Infantile Spasms is a catastrophic form of epilepsy, nothing good comes of it.
Thank you so much for sharing this! My 11 month old niece had an EEG yesterday to test for Infantile Spasms. The EEG was normal, but now I am researching Infantile Spasms en masse , as this was the first time I'd ever heard of it, and I have three grown children! Aliyah is beautiful! Thanks again!
What your son do
Recuerdo que a mí nieto le daba espasmos de west, hoy ya no los tiene, gracias a Dios.
thank you, she is my angel.. she is very serene
Thank you for your concern, though Aliyah has seizures regardless. :( Infantile Spasms does not give her any peace. Her seizures are not triggered by the TV/camera/lights as other epilepsy cases. Her neurologists told me it is okay to video record whenever possible to keep a diary of her progress/regression of seizures.
Woah I hadn't finished typing yet!! I was saying I think it's damned rude of people to critisize you for recording this. I hope she is doing well, she's absolutely adorable!!
This is difficult . She is calm but aware there is something wrong. So very sad.
If that isn't the cutest baby EVER, I don't know what is! I never like it when people say sorry when they are told having seizures are a part of who I am, so I am not going to. Hope you find some degree of control for her. Much Love
Thankyou for sharing.very subtle features, hope the little angel is good, will help me diagnose cases.regards
Awwwww, what a cute, sweet good girl!!!!
ThankS to DR Rorpopor Herbal on UA-cam who helps me cured my PCR God bless you DR Rorpopor Herbal his herbal medication is very infective and active✨✨✨✨✨
She's so beautiful must be awful for parents watching their children go through this.
By the way, The ketogenic diet helps a lot I hear.
Hi, keith ...Aliyah is now 4.. She has been evaluated to be around 22-24months cognitively... But overall she is doing great!!! HAs the county come to your home and offered services yet? we started with PT and OT right away when she was diagnosed.
awww She s beautiful
Same issue my daughter 😢😢😢
My daughter is in the hospital right now for this can you fill me in on what I should expect? She has both also
to - lizettenj: i'm a bit confused. how did she got into a seizures in the high chair eating finger foods?
IS happens whenever it wants, it's not like seizures in that it doesn't have a trigger. When it's going to happen, it happens regardless of anything.
continue reply: I posted this video so other parents can see what infantile spasms look like, Aliyah went undiagnosed for so long I DO NOT want another parent or children going through this due to lack of awareness of the different disguises epilepsy can have. take care
lizettehnj how is your daughter doing now ?
Thanks for showing to us may God heal our children from such painful experience 🙏
It just brought me to tears !! She is a beautiful angel!! I want to as why? But I’m a Cristian and I know that God has the Power to heal her in a second !! In Jesus Name!! I proclaimed in the name of Jesus Christ this Alijah is healed!! Amen 🙏
Suanki bebeğinizin durumu nasıl benim torunumda aynı şuan iki yaşında
She is soo cuuuuuute 💖
My baby also have ...its so pain full
hi! how is your baby doing?
@RebbeccaJasmin: thank you for your support. yeah the things people inbox me, I just wanted an awareness video on youtube because all seizures look different it comes in different disguises. Is it possible for your neurologist to give your son a 24 hour EEG? if he doesn't will it be possible for you to get a second opinion? Let me know how I can be of any help! hugs!
THANK YOU! SHE IS CUTE ISN'T SHE?? :)
Hi, I have a 7 month old son, he has seizure attacks, developmentally delayed. I just want to ask if she is delayed too? how old is she? how's she doing now?
she has very beautiful eyes.
She is sooooooooooo cute and what a good baby just sitting there so good!!
I'm sorry but this is sooo ignorant. This child cannot respond, they are basically having small seizures. Child wasn't sitting there all nice, she was sitting there scared and confused. Please do more research before commenting on a video about a disability you know nothin about, just because the child is "sitting nicely".
These children apparently seem to be thinking nothing until they snap out of it, there is severe brain damage being done during these fits. So you just said she's sitting so well when what you're seeing is her enduring fresh brain damage.
Hi. My daughter has IS like your daughter's seizures, too. My daughter also has tuberous sclerosis. She is taking Vigabatrin, and her seizures have stopped by the medicine now. How's your daughter doing now?
Sabril was the medication that stopped the majority of her seizures. After being 13months seizure free, her seizures came back but not IS anymore but myclonic seizures
I have t s c also. so does my son. I have a mentally challended sister that has it also.
Thanks God your daughter is fine now my 6 months twins are having them they could nt get help m so stressed 😭😭
Thank you for posting, it helps others!
Now how is the baby ..is she doing good now..my baby also have same problem.. please give reply
It has been a decade and Aliyah still has seizures everyday. Cognitively she is significantly behind but she leads a happy life. Every case is different though, there are so many stories out there. I am just grateful my daughter is able to smile every day and lead a good life even though she has her seizures every day upon awakening. I pray for your family to have some answers and for seizure freedom.
@@aliyahhoffman8229 thank you for replying
@@aliyahhoffman8229 hi, how is she now? I hope things have gotten a little better? I'm curious to know, have you ever tried ACTH for treating the infantile spasms? I'm a med student so, we learn in theory that ACTH is used in the treatment for infantile spasms but I've never seen a case of infantile spasms before. I apologise if I sound too intrusive in any way, that's not my intention, I'm asking out of sheer curiosity.
And I pray and hope that Aliyah feels at least a little better someday.. it broke my heart to see her in that state.. I always tear up every time I see infants/toddlers/children sick, I can never get used to it.. can't imagine how it must feel sometimes, being her parents.. warm hugs your way.
@@namrata9235 Aliyah (now 11) is still having seizures everyday. ACTH made no difference, if anything it caused more harm than good. It was one of the first medications we went for. Thanks for looking into infantile spasms. Aliyah's pediatrician's nurse told us to stop calling the clinic because there was nothing wrong with her and dismissed Aliyah's head drops as night terrors. They eventually did apologize using the excuse they never saw that type of seizure. I am happy that at least your professors are mentioning infantile spasms to there students. I wish Aliyah's former pediatrician would have had that knowledge instead of quickly dismissing us and having Aliyah go months without medical intervention.
she is cute and adorible but I do t see a seizure
Beware mother's hospitals are taking newborns into private rooms without parents conservative ! My two boys have the same kind of odd twitch and I am concerned it may be some implant
It must be aliens. Clearly they've abducted your brain.
Piccolina😘
All she did was move her head like a normal toddler.
+tek3chick yes exactly. It's like half a second jerk. Other people leave asshat remarks expecting her to have a giant seizure. But I saw exactly what you did. Poor baby. She is so cute.
+Michelle Mankin Mee Thanks for your post I should have added she was under 3 different anti-seizure meds at that time making her seizures less visible but during the EEGs it made no difference.
that's all it looks like but in their head nothing is going on. go to my page. you can see my son stare and stare until he fades out completely. it's a very serious thing and there needs to be awareness. it looks like no big deal on the outside but I'm the inside there is severe brain damage being caused. unless they're lucky like me and my son... but my sister had them and she's 23 28th the mind of a two year old child.
do your baby's do that very often? the only one of the six I have that did was the one with infantile spasms...
I know this comment is very old but.... this poor girls eyes keep rolling to the back of her head and a few times (that I could see) they moved separately.
I can't even imagine how frightening this must be. I hope she is doing well.