I just wanted to thank you for posting this video of your son. A year and a half ago I was searching for answers about these movements my three year old had been doing daily and seemed to be increasing. Unfortunately I would bring it up to different doctors and no one was ever concerned or looked into it. I took to google searching and TH-cam videos and that's when I came across this video. When I seen your son do the exact same thing I had been trying to describe to all these doctors I knew immediately I had found out what these movements were. I called a neurology clinic and set up an EEG for him myself after watching this. They captured 3 myoclonic seizures during the hour long test. I just wanted to let you know how much this video changed our lives, I don't know how much longer we would have been searching for answers if I had not come across this so thank you for sharing!
Also, we are still searching for something to stop his seizures, we have tried many medications along with the modified Atkins diet. Have you found anything that has worked for your son?
+Michelle O I am so glad this video was helpful to you but so sorry to hear that your son is having seizures. Epilepsy sucks and it is a rough road... there's no doubt about it. So sorry that I did not reply sooner. I started a new job and have not been checking this account (It's in my husband's name). We have tried about a dozen medications and the Ketogenic Diet. The combo that has given the best results for Ethan is Onfi, Depakote, and a med we get from Europe called Ospolot (Sulthiame) that is similar to Topomax and Zonegran. However, he is back to having 1-2 clusters per day that last 3-5 minutes. So, we are looking at some more changes. Thinking about you and your son and hoping you have found something that works for him!
Andrew Potocki I heard something like vns therapy why don’t you give it a try .I have 4 months old kid who is suffering from myoclonic seizures he is under medication at the moment but I will definitely be taking an opinion on VNS .
He chose you for a mom because it's very obvious, your are perfectly wonderful with him and he couldn't ask for a more loving perfect mother for him that will travel every road you can right beside him, a little in front.. watching over him. What a blessing.
Hello all. This is Ethan's Mom. I hadn't realized until tonight that this had gotten so many views and even some comments. I think we had posted this originally so that we could spread some awareness. I guess it has worked. I hope to continue doing so. Ethan was initially diagnosed with Infantile Spasms, but this video is of some of his later, more subtle spasm clusters after having been on many different medications as well as the Ketogenic Diet (which did not work for him). To be clear, early and aggressive treatment is advisable for Infantile Spasms. In fact, if a parent is concerned that a baby has Infantile Spasms, I would recommend 1) getting a video of the spasms (if possible), 2) taking the child (and video) to an ER as quickly as possible (preferably at a children's hospital), and 3) demanding to see a pediatric neurologist as well as to be hooked up to an EEG. In our case, after about a dozen medications (as well as the Keto Diet as I mentioned), in August of 2013 we found Ethan's "magic combination" of anti-seizure medications, and although I sometimes see little blips shortly after he wakes up from sleep, we have not seen any seizures in over a year, and his EEGs have all been normal!!! As a result, he has recently started to make some great progress developmentally. It took many months for his brain to calm down, I think, even after he was seizure-free, but things that didn't click before are now starting to click. In fact, last week he could suddenly identify the names and sounds of over half the letters in the alphabet, and he is starting to identify certain words. He could only say one-word phrases for the longest time, but he is starting to formulate 3-4 word sentences. Thank you to all who have offered some suggestions and ideas. Ethan's case has been reviewed by neurologists at 5 major children's hospitals, but I value the opinions of people who've "been there." So, thank you for caring enough to share your thoughts and opinions. If anyone has any questions for me, I'm happy to message back and forth. Happy to share, but to be clear, I have no medical training. Thanks again!
Andrew Potocki Do you mind sharing what medicines are the magic combination? My sons episodes mimic your sons and your story above with failed meds, developmental regression, etc. My son has failed 3 meds and we are trying the Keto diet now. We're seeing improvements but not spasm free. Just trying to educate ourselves with other cases who seem similar as we are considered an unusual case due to his age (4 years) and with what meds others have used. We are working with a great team of doctors but as parents just want to be more educated so we can advocate for our child. Thanks for sharing your story!
+Amanda I am so sorry that I did not reply sooner. This is my husband's account, and I started a new teaching job and obviously haven't checked this account for comments since the beginning of the school year. His "magic" combo is no longer working completely... he is having 1-2 clusters daily again that each last 3-5 minutes... however, the combination is Onfi, Divalproex (Depakote), and a medication we get from Europe called Ospolot (Sulthiame) that is similar to Topomax and Zonegran.
my grandson has just been diagnosed with Myoclonic seizures. please could we message. Since i am 76 my computer knowledge is limited. I feel my son and wife don't realize the seriousness of this yet. My first question is; is there a particular syndrome he is in?
I am 32 and I have myoclonic seizure "jerks" I've had them since I was about 2 years old. I wouldn't wish this on anyone. I hope his got taken care of while he was little...
I'll never understand why commenters don't read descriptions before they start telling parents what they should and shouldn't do on such a severe but vast thing such as seizures. No one person is the same people. LoL Anyway I'm really happy your little boy is doing well and will be just fine. He is super cute and good for you for taking video and at least trying to help other people with it. I'm sure there are people who have got help from it even if the only ones to comment give you 10 different things that you MUST DO RIGHT NOW there are those who appreciate it. Have a wonderful and long life with your beautiful boy. :o)
boa noite. tenho 1 filho de 20meses com crises iguais ao ethan neuropediatra fala ser espasmos infantis também falou na possibilidade de ser mioclonias já tentamos várias medicações sem sucesso como por exemplo kepra, sabril, zonegran sem qualquer sucesso também muito preocupados com ele será que nós podia dizer que medicações ethan fez quais tiveram resultados já fizemos vários eeg que mostram alterações mas técnicos e médicos dizem não ser muito conclusivos que acusam espasmos e mioclonias espero que nos possam ajudar desde já muito obrigado e tudo de bom e do melhor para vocês...
My 3 year old daughter also has myoclonic seizures. Her eyes started doing the same thing until she was prescribed Zonisamide along with Depakote Sprinkles. Hope Ethan is doing well! I've never seen anyone have the same seizures as her before.
I just got diagnosed. I thought I was just having a weird episode where I would be confused and shake and jerk for hours. Sometimes all day. A lot of times its triggered by things like moving a big box or low blood sugar but the episode keeps going after the blood sugar is resolved. Hours and hour. Finally if I lay down and rest it helps slow things down. So I end up in bed a lot from exhaustion. Ill sleep sometimes 18hrs a day. We are working on fixing it now. I took a video of it as proof because I figured they wouldn't believe up to 6 hours tremors and myoclonic jerks. Whew it makes me so tired. We doubled my lamictal that I had already been taking for bipolar. I know its been some years. How is he doing now?
Hi, I saw you posted this a while ago and was wondering if you have anymore info to pass along. My 18 month old just recently was diagnosed with this so I'm just wondering around the internet (probably more then I should be) looking for any info that might help. Hope your little guy grew out of it.
I am 25 and I haven’t grown out of it but it can be managed by identifying triggers. For me it’s lack of sleep, flashing lights, and vibrating objects like electric toothbrushes. Maybe medicine like keppra. We have given my son and daughter keppra
Hi, I just saw the video and I think my son has this. I have read that this movements disappear with time can you tell me your experience with this? Thank you.
My brother in law did a Ketogenic Diet for 5 years and his life changed 90% nowadays he has almost no myoclonic seizures, and no more than 2-3 epileptic attacks per year. We continued the diet 1 year more that is recommended, because we were a bit afraid of taking it away because of all the improvement we've seen and didn't want to go back to the bad days. Check it with your doctor to see if you can start it.
I was on many medications for seizures growing up and they all made me worse by far. To the point of questioning brain surgery. I have been off all medication for 2 years and stay on an organic diet, no preservatives especially polysorbate 20, 40, 60, 80, no msg, no high fructose corn syrup, no aspartame, no fake sugars, lower the intake of refined sugars, no food dyes, low to no gluten, no milk, no meat with hormones or antibiotics, no vaccines. Its worth going without these to be seizure free!
Hello I recently saw this video and it is similar to my sons jerks. My son was put on depakine but after one month seizures returned. Can you pease update me on how your son is doing, does it get better with time, and can it be cured. Best wishes
Are you familiar with the GAPS or SCD protocols? Perhaps there is something there. I have read numerous articles from people who found unlikely help with their seizures with one or the other.
Hello! I'm 40 and started getting these after my doc put me on gabapentin for nerve pain. I would sometimes throw my remote, cigarette, etc., across the room. It would happen out of the blue, with no build up to it. What was worse was when I'd hit myself in the face with whatever was in my hand - remote, phone, cigarette, vape mod, etc. Once I weaned off of the gabapentin/neurontin, they went away.
That's crazy that you said that bc I had a boyfriend that took that same medicine and started having seizures. He passed away in January 2005. But not from that. He was in a horrible car wreck. But we even said that we thought his seizures were brought on from that medicine.
boa noite. tenho 1filho com 20meses e tem crises iguais ao ethan neuropediatra fala ser espasmos infantis mas já tentamos várias medicações sem sucesso já utilizamos kepra, sabril, zonegran sem qualquer sucesso será que nos podia dizer algo mais sobre o ethan como ele está que medicações tomou se tiveram efeito desde já obrigado e tudo de melhor para vocês.
Was that a spasm at 0:35 when his head dropped to the side? I have a doctor who suspects I get seizures, and that head-drop was exactly what happens during my possible seizure episodes.
Hi Dear, Thanks for sharing this video ....for my son who is 4.3 years now was diagnosed with epilepsy when he was 3 years.....we tried all most all medicines but increase of dosage is making him worst....now doctor has recommended atkins modified diet. ......honestly dont know how to help him...his development was very well until he had seizures...but now it has become slower...he gets everyday.......we are now undergoing some blood tests now.....results are yet to be given......what combination are u giving to ur son....any suggestion for me
I would appreciate anyone watching the videos on my profile of my 23 month old having what seems to be myoclonic seizures. She's had a normal EEG. Has not been diagnosed.
+Sarah Murnane I am so sorry to hear that you are going through this. Epilepsy sucks. I do not check this account very often. So, I am sorry that I did not reply sooner. I sure hope you are getting/will get answers soon. Please feel free to contact me with any questions.
My daughter used to have these when she was young. She 14 now. I dont know if they stop as she grew or because of change of medication. She is now on vigabratin and lamotrigine. But she continue to have tonic clonic seizures . Jope uour son is better
I have them till I'm 35 and are really bad right now I got them from my dad so I know how you feel about your child having them and plus I have ADHD add dyslexia and OCD and I have mental disorder so I know how you feel and I read at a 3rd grade level thank you for posting this so much people don't post videos of this so I don't know what other people go through I think it was just me at one point please contact me
Do they grow out of this, or is it permanent? My 7 month old has started twitching randomly and its getting worse. However, its only whenever she's sitting up or "standing" that she does it. We're still waiting to see a neurologist.
Most babies with Infantile Spasms will go on to develop other types of seizures. However, Ethan has never really had another type of seizure - only these clusters of Myoclonic/spasm-like seizure. I mentioned above that we had not seen any of these clusters in over a year, and we did go without them for over a year, but he is back to having 1 - 2 clusters a day. (They are really, really subtle now, but they are there.) It is important to note that there is a small subset of babies (who are diagnosed with Infantile Spasms) who respond to treatment and do not develop other types. It is also important for you to know that Infantile Spasms will happen in any position. When Ethan was in the middle of a cluster, we could change his position to sitting, standing, laying, and they would continue to happen no matter what (and this is still the case). They occurred most frequently in the time period shortly after he woke up (and still do), but he also had clusters at random times during the day. Just to be clear, babies move in jerky ways, and the vast, vast majority of jerky movements are quite normal. Another baby I know very well (and many other babies too) did this shuddering/jerking thing when she was excited (which became very, very frequent between the ages of 6 and 12 months), but she has basically outgrown them. It is a "normal" phase through which many babies pass. The spasms in this video are pretty subtle compared to the spasms Ethan had before he was diagnosed and on medication. Suddenly and violently, his head would come down and his whole body would crunch up (like a stomach crunch/sit-up). One time I was holding him when he had a spasm and his head came down so suddenly and violently that he hit is forehead on my mouth and had my teeth marks on his forehead.
don't give him any medication that's how my son's seizures were before he started taking medication believe me that's ok compare with what happens next when they give you medication, he developed two more different seizures with three different medications that's how they get worse.
Thank you. We see an excellent genetics doctor who has ordered two panels as well as whole exome sequencing. All have come back normal, but I truly appreciate the thought. We would love to know what causes his epilepsy and developmental delay. Thank you for caring.
Wow that was really Interesting to see how he became a seizure and what the Mother does. And for you a Tip for your lovey Child. If your son play wit a toy that have lights go on and of. That’s not good why that’s so the Nerves System his by seizure high and that’s the Reason that the body is out of control it happened in a local or every part of theBrain that’s high tension and Relaxation in the Brain. I hope I Said nothing wrong. Why I love to help and in the right way. 💪Strong ❤️Love 🤝Trust 👦🏼✌️Peace’s.
try gluten free diet no red meat no wheat, soy, corn stach, only fruits beggies chicken no sugars, stay away from medication. i wish i can go back in time and not given my son any of that crap doctors just test with medications and see wich one works for them but they have a lot of side effects specially when you stop them he can have a prolonged seizure or have a new seizure together with the one he already has so you don't want to go there.
Well without that "poison" the population would be smaller and have a decreased life expectancy. Edit: The likelihood of getting symptoms from a vaccine are dramatically smaller than the likelihood of getting the diseases they vaccinate against, just saying.
Stop letting doctors inject mercury, formalahyde and god knows what all into your babies. I knew a pharmacy rep. Heres what doctors get for dosing out their meds/vaccines: five star restaurant certificates, 5 day vacation to a resort, cruises..this is for starters.. not even going to mention the money. If u think I lie, well..I DON'T.
Brown Eyedgirl, please do not judge a situation you know nothing about. We filmed him on our doctor’s order so she could see how the seizures manifest themselves. Also, for ANY person having a seizure, you aren’t supposed to try and suppress the movements or convulsions. You keep them away from objects that could hurt them and make sure they won’t aspirate. Don’t feel sorry at al for him. He has the best mother in the world.
Brown Eyedgirl you ass..did you not read what mothers have said? It helped them to identify what was happening to their child which is SAVING OTHER PEOPLES children. She did this for the health and safety of children so the parents KNOW and can get them treatment. In her description, she explains WHY she is filming. It is the honorable, unselfish thing to do.
Please STOP judging these parents!!! There is a good reason the mum was videoing. I’m sure she cradles her baby at other times. The videos are good to show the child’s current condition.
I have these types of seizures and they happen often and as often as he had them in the video I would dare to say is quite a bit. She can't hold him through every jerk. She is helping other people who may not understand by doing this video. He is safe, fairly comfortable and getting through it like a big boy.
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I just wanted to thank you for posting this video of your son. A year and a half ago I was searching for answers about these movements my three year old had been doing daily and seemed to be increasing. Unfortunately I would bring it up to different doctors and no one was ever concerned or looked into it. I took to google searching and TH-cam videos and that's when I came across this video. When I seen your son do the exact same thing I had been trying to describe to all these doctors I knew immediately I had found out what these movements were. I called a neurology clinic and set up an EEG for him myself after watching this. They captured 3 myoclonic seizures during the hour long test. I just wanted to let you know how much this video changed our lives, I don't know how much longer we would have been searching for answers if I had not come across this so thank you for sharing!
Also, we are still searching for something to stop his seizures, we have tried many medications along with the modified Atkins diet. Have you found anything that has worked for your son?
+Michelle O I am so glad this video was helpful to you but so sorry to hear that your son is having seizures. Epilepsy sucks and it is a rough road... there's no doubt about it. So sorry that I did not reply sooner. I started a new job and have not been checking this account (It's in my husband's name). We have tried about a dozen medications and the Ketogenic Diet. The combo that has given the best results for Ethan is Onfi, Depakote, and a med we get from Europe called Ospolot (Sulthiame) that is similar to Topomax and Zonegran. However, he is back to having 1-2 clusters per day that last 3-5 minutes. So, we are looking at some more changes. Thinking about you and your son and hoping you have found something that works for him!
Andrew Potocki I heard something like vns therapy why don’t you give it a try .I have 4 months old kid who is suffering from myoclonic seizures he is under medication at the moment but I will definitely be taking an opinion on VNS .
😢 and how long did it take coz am on that fate
He chose you for a mom because it's very obvious, your are perfectly wonderful with him and he couldn't ask for a more loving perfect mother for him that will travel every road you can right beside him, a little in front.. watching over him. What a blessing.
Hello all. This is Ethan's Mom. I hadn't realized until tonight that this had gotten so many views and even some comments. I think we had posted this originally so that we could spread some awareness. I guess it has worked. I hope to continue doing so.
Ethan was initially diagnosed with Infantile Spasms, but this video is of some of his later, more subtle spasm clusters after having been on many different medications as well as the Ketogenic Diet (which did not work for him).
To be clear, early and aggressive treatment is advisable for Infantile Spasms. In fact, if a parent is concerned that a baby has Infantile Spasms, I would recommend 1) getting a video of the spasms (if possible), 2) taking the child (and video) to an ER as quickly as possible (preferably at a children's hospital), and 3) demanding to see a pediatric neurologist as well as to be hooked up to an EEG.
In our case, after about a dozen medications (as well as the Keto Diet as I mentioned), in August of 2013 we found Ethan's "magic combination" of anti-seizure medications, and although I sometimes see little blips shortly after he wakes up from sleep, we have not seen any seizures in over a year, and his EEGs have all been normal!!! As a result, he has recently started to make some great progress developmentally. It took many months for his brain to calm down, I think, even after he was seizure-free, but things that didn't click before are now starting to click. In fact, last week he could suddenly identify the names and sounds of over half the letters in the alphabet, and he is starting to identify certain words. He could only say one-word phrases for the longest time, but he is starting to formulate 3-4 word sentences.
Thank you to all who have offered some suggestions and ideas. Ethan's case has been reviewed by neurologists at 5 major children's hospitals, but I value the opinions of people who've "been there." So, thank you for caring enough to share your thoughts and opinions.
If anyone has any questions for me, I'm happy to message back and forth. Happy to share, but to be clear, I have no medical training. Thanks again!
Andrew Potocki Do you mind sharing what medicines are the magic combination? My sons episodes mimic your sons and your story above with failed meds, developmental regression, etc. My son has failed 3 meds and we are trying the Keto diet now. We're seeing improvements but not spasm free. Just trying to educate ourselves with other cases who seem similar as we are considered an unusual case due to his age (4 years) and with what meds others have used. We are working with a great team of doctors but as parents just want to be more educated so we can advocate for our child. Thanks for sharing your story!
+Amanda I am so sorry that I did not reply sooner. This is my husband's account, and I started a new teaching job and obviously haven't checked this account for comments since the beginning of the school year. His "magic" combo is no longer working completely... he is having 1-2 clusters daily again that each last 3-5 minutes... however, the combination is Onfi, Divalproex (Depakote), and a medication we get from Europe called Ospolot (Sulthiame) that is similar to Topomax and Zonegran.
my grandson has just been diagnosed with Myoclonic seizures. please could we message. Since i am 76 my computer knowledge is limited. I feel my son and wife don't realize the seriousness of this yet. My first question is; is there a particular syndrome he is in?
Andrew Potocki you can also tell by his breathing afterwards, or lack of, trying to catch his breath.
The one when he shuttered seemed to last a while, because he didn't seem to come out of it and talk right away that time. 😞
I am 32 and I have myoclonic seizure "jerks" I've had them since I was about 2 years old. I wouldn't wish this on anyone. I hope his got taken care of while he was little...
I hope Ethan is doing well! It also looked like he had an "absence seizure". He is adorable!
Thank u mam !!! U are a brave mom😊 I'm a medical student and this video actually helped me learn how myoclonic seizures look likr
I'll never understand why commenters don't read descriptions before they start telling parents what they should and shouldn't do on such a severe but vast thing such as seizures. No one person is the same people.
LoL Anyway I'm really happy your little boy is doing well and will be just fine. He is super cute and good for you for taking video and at least trying to help other people with it. I'm sure there are people who have got help from it even if the only ones to comment give you 10 different things that you MUST DO RIGHT NOW there are those who appreciate it.
Have a wonderful and long life with your beautiful boy. :o)
A couple of people mentioned how cute he is... just for the record.... we totally agree!!!! :-) Super cute and super sweet!!!
boa noite. tenho 1 filho de 20meses com crises iguais ao ethan neuropediatra fala ser espasmos infantis também falou na possibilidade de ser mioclonias já tentamos várias medicações sem sucesso como por exemplo kepra, sabril, zonegran sem qualquer sucesso também muito preocupados com ele será que nós podia dizer que medicações ethan fez quais tiveram resultados já fizemos vários eeg que mostram alterações mas técnicos e médicos dizem não ser muito conclusivos que acusam espasmos e mioclonias espero que nos possam ajudar desde já muito obrigado e tudo de bom e do melhor para vocês...
Andrew Potocki he needs a puppy who will grow up with him and watch out for him just in case. Dogs sense things we dont. I recommend a lab.
Andrew Potocki yes, he is precious. Prayers.
Weff
He’s so adorable saying please
My 3 year old daughter also has myoclonic seizures. Her eyes started doing the same thing until she was prescribed Zonisamide along with Depakote Sprinkles. Hope Ethan is doing well! I've never seen anyone have the same seizures as her before.
I just got diagnosed. I thought I was just having a weird episode where I would be confused and shake and jerk for hours. Sometimes all day. A lot of times its triggered by things like moving a big box or low blood sugar but the episode keeps going after the blood sugar is resolved.
Hours and hour. Finally if I lay down and rest it helps slow things down. So I end up in bed a lot from exhaustion. Ill sleep sometimes 18hrs a day. We are working on fixing it now.
I took a video of it as proof because I figured they wouldn't believe up to 6 hours tremors and myoclonic jerks. Whew it makes me so tired.
We doubled my lamictal that I had already been taking for bipolar.
I know its been some years. How is he doing now?
My son had this at this age. But not often. And it disappeared after a certain time . Was it only temporary, or could it come back. He is 16 now ?
Hi, I saw you posted this a while ago and was wondering if you have anymore info to pass along. My 18 month old just recently was diagnosed with this so I'm just wondering around the internet (probably more then I should be) looking for any info that might help. Hope your little guy grew out of it.
I am 25 and I haven’t grown out of it but it can be managed by identifying triggers. For me it’s lack of sleep, flashing lights, and vibrating objects like electric toothbrushes. Maybe medicine like keppra. We have given my son and daughter keppra
My son acts very similar. Everyone tells me I am overreacting and it's normal toddler behavior. How did you get him diagnosed?
He looks like he's trying to hit the dab
Hi, I just saw the video and I think my son has this. I have read that this movements disappear with time can you tell me your experience with this? Thank you.
My brother in law did a Ketogenic Diet for 5 years and his life changed 90% nowadays he has almost no myoclonic seizures, and no more than 2-3 epileptic attacks per year.
We continued the diet 1 year more that is recommended, because we were a bit afraid of taking it away because of all the improvement we've seen and didn't want to go back to the bad days.
Check it with your doctor to see if you can start it.
I was on many medications for seizures growing up and they all made me worse by far. To the point of questioning brain surgery. I have been off all medication for 2 years and stay on an organic diet, no preservatives especially polysorbate 20, 40, 60, 80, no msg, no high fructose corn syrup, no aspartame, no fake sugars, lower the intake of refined sugars, no food dyes, low to no gluten, no milk, no meat with hormones or antibiotics, no vaccines. Its worth going without these to be seizure free!
Hello
I recently saw this video and it is similar to my sons jerks. My son was put on depakine but after one month seizures returned.
Can you pease update me on how your son is doing, does it get better with time, and can it be cured.
Best wishes
hi ...even my son is suffering from same...how is your son now...please reply
Are you familiar with the GAPS or SCD protocols? Perhaps there is something there. I have read numerous articles from people who found unlikely help with their seizures with one or the other.
Hello! I'm 40 and started getting these after my doc put me on gabapentin for nerve pain. I would sometimes throw my remote, cigarette, etc., across the room. It would happen out of the blue, with no build up to it. What was worse was when I'd hit myself in the face with whatever was in my hand - remote, phone, cigarette, vape mod, etc. Once I weaned off of the gabapentin/neurontin, they went away.
That's crazy that you said that bc I had a boyfriend that took that same medicine and started having seizures. He passed away in January 2005. But not from that. He was in a horrible car wreck. But we even said that we thought his seizures were brought on from that medicine.
boa noite. tenho 1filho com 20meses e tem crises iguais ao ethan neuropediatra fala ser espasmos infantis mas já tentamos várias medicações sem sucesso já utilizamos kepra, sabril, zonegran sem qualquer sucesso será que nos podia dizer algo mais sobre o ethan como ele está que medicações tomou se tiveram efeito desde já obrigado e tudo de melhor para vocês.
Tuberous Sclerosis? Have you had him checked (imsure) by peds neuro?
This is hard to watch. Poor kiddo
Was that a spasm at 0:35 when his head dropped to the side? I have a doctor who suspects I get seizures, and that head-drop was exactly what happens during my possible seizure episodes.
mikaela cash Thanks for asking. Best wishes to you!
Andrew Potocki To you, as well! :)
Hi Dear,
Thanks for sharing this video ....for my son who is 4.3 years now was diagnosed with epilepsy when he was 3 years.....we tried all most all medicines but increase of dosage is making him worst....now doctor has recommended atkins modified diet. ......honestly dont know how to help him...his development was very well until he had seizures...but now it has become slower...he gets everyday.......we are now undergoing some blood tests now.....results are yet to be given......what combination are u giving to ur son....any suggestion for me
Hi Divya,
Hows your son is doing now? Can you please help spread the situation & treatment.... God bless you all...
Hey mama. Where did you get they you from? Would like to get my little one, one. Tia!
Wonderful boy. I trust he is doing better. May I ask what triggered it (caused) and when did u start observing it? (i.e. at what age)
Thank you
I would appreciate anyone watching the videos on my profile of my 23 month old having what seems to be myoclonic seizures. She's had a normal EEG. Has not been diagnosed.
My son's neurologist told us that myoclonic seizures are really hard to diagnose, so they really need a 24 EEG usually for them.
We are going through this right now :( I posted videos that I managed to capture. Hopefully we will get answers soon
+Sarah Murnane I am so sorry to hear that you are going through this. Epilepsy sucks. I do not check this account very often. So, I am sorry that I did not reply sooner. I sure hope you are getting/will get answers soon. Please feel free to contact me with any questions.
My daughter used to have these when she was young. She 14 now. I dont know if they stop as she grew or because of change of medication. She is now on vigabratin and lamotrigine.
But she continue to have tonic clonic seizures . Jope uour son is better
neuropediatra também não sabe se será apenas espasmo ou epilepsia mioclonica
I have them till I'm 35 and are really bad right now I got them from my dad so I know how you feel about your child having them and plus I have ADHD add dyslexia and OCD and I have mental disorder so I know how you feel and I read at a 3rd grade level thank you for posting this so much people don't post videos of this so I don't know what other people go through I think it was just me at one point please contact me
Do they grow out of this, or is it permanent? My 7 month old has started twitching randomly and its getting worse. However, its only whenever she's sitting up or "standing" that she does it. We're still waiting to see a neurologist.
Most babies with Infantile Spasms will go on to develop other types of seizures. However, Ethan has never really had another type of seizure - only these clusters of Myoclonic/spasm-like seizure. I mentioned above that we had not seen any of these clusters in over a year, and we did go without them for over a year, but he is back to having 1 - 2 clusters a day. (They are really, really subtle now, but they are there.) It is important to note that there is a small subset of babies (who are diagnosed with Infantile Spasms) who respond to treatment and do not develop other types. It is also important for you to know that Infantile Spasms will happen in any position. When Ethan was in the middle of a cluster, we could change his position to sitting, standing, laying, and they would continue to happen no matter what (and this is still the case). They occurred most frequently in the time period shortly after he woke up (and still do), but he also had clusters at random times during the day. Just to be clear, babies move in jerky ways, and the vast, vast majority of jerky movements are quite normal. Another baby I know very well (and many other babies too) did this shuddering/jerking thing when she was excited (which became very, very frequent between the ages of 6 and 12 months), but she has basically outgrown them. It is a "normal" phase through which many babies pass. The spasms in this video are pretty subtle compared to the spasms Ethan had before he was diagnosed and on medication. Suddenly and violently, his head would come down and his whole body would crunch up (like a stomach crunch/sit-up). One time I was holding him when he had a spasm and his head came down so suddenly and violently that he hit is forehead on my mouth and had my teeth marks on his forehead.
Please feel free to ask questions, but know that I have no medical training, only the experience and research I have done on behalf of my son.
By the way, this is Ethan's Mom, Karen. My husband's name is on our account, but I am using it at the moment.
hi mom how is your baby now
don't give him any medication that's how my son's seizures were before he started taking medication believe me that's ok compare with what happens next when they give you medication, he developed two more different seizures with three different medications that's how they get worse.
How is your son today?
Hi Ethan What A Sweet Boy
If you have not already, you might want to have him tested for the MTHFR gene mutation.
Thank you. We see an excellent genetics doctor who has ordered two panels as well as whole exome sequencing. All have come back normal, but I truly appreciate the thought. We would love to know what causes his epilepsy and developmental delay. Thank you for caring.
He's very cute :(
Wow that was really Interesting to see how he became a seizure and what the Mother does. And for you a Tip for your lovey Child.
If your son play wit a toy that have lights go on and of. That’s not good why that’s so the Nerves System his by seizure high and that’s the Reason that the body is out of control it happened in a local or every part of theBrain that’s high tension and Relaxation in the Brain. I hope I Said nothing wrong. Why I love to help and in the right way. 💪Strong ❤️Love 🤝Trust 👦🏼✌️Peace’s.
It troubles me that the mother is totally ignoring the child while busy making the video! Am I the only one seeing this,,?
Shut up. She’s recording to bring awareness to other parents. Duh 🙄
Please please please awwwww❤❤❤
Kid had a seizure due to drugs because the did ended at 420
look's ok to me
?
try gluten free diet no red meat no wheat, soy, corn stach, only fruits beggies chicken no sugars, stay away from medication. i wish i can go back in time and not given my son any of that crap doctors just test with medications and see wich one works for them but they have a lot of side effects specially when you stop them he can have a prolonged seizure or have a new seizure together with the one he already has so you don't want to go there.
I believe this comes from the poison the government is putting in the shots....
Well without that "poison" the population would be smaller and have a decreased life expectancy.
Edit: The likelihood of getting symptoms from a vaccine are dramatically smaller than the likelihood of getting the diseases they vaccinate against, just saying.
He can have Tourettes
Stop letting doctors inject mercury, formalahyde and god knows what all into your babies. I knew a pharmacy rep. Heres what doctors get for dosing out their meds/vaccines: five star restaurant certificates, 5 day vacation to a resort, cruises..this is for starters.. not even going to mention the money. If u think I lie, well..I DON'T.
I feel sorry for this little guy-his mother is filming him instead of holding him in her arms-it seems cruel to me.
Brown Eyedgirl, please do not judge a situation you know nothing about. We filmed him on our doctor’s order so she could see how the seizures manifest themselves. Also, for ANY person having a seizure, you aren’t supposed to try and suppress the movements or convulsions. You keep them away from objects that could hurt them and make sure they won’t aspirate. Don’t feel sorry at al for him. He has the best mother in the world.
Brown Eyedgirl you ass..did you not read what mothers have said? It helped them to identify what was happening to their child which is SAVING OTHER PEOPLES children. She did this for the health and safety of children so the parents KNOW and can get them treatment. In her description, she explains WHY she is filming. It is the honorable, unselfish thing to do.
Please STOP judging these parents!!! There is a good reason the mum was videoing. I’m sure she cradles her baby at other times. The videos are good to show the child’s current condition.
I have these types of seizures and they happen often and as often as he had them in the video I would dare to say is quite a bit. She can't hold him through every jerk. She is helping other people who may not understand by doing this video. He is safe, fairly comfortable and getting through it like a big boy.
Brown Eyedgirl : You should not be judging this mother. Clearly, she’s trying to record the seizures/jerkings to probably show the child’s doctor???