my son had his 1st infantile spasm at 6 months old and 2 days after his 6 month immunizations. Keppra, topamax and klonopin is what it took to decrease his seizures. A year after his 1st seizure he just quit having them. Hasn't had one since. He couldn't hold his bottle when he was a year old. He didn't start talking until he was 3 years old. He is now 11 years old and has remained seizure free. He is developmentally appropriate. He plays many sports and is so smart.
Shannon Lovelace my daughter also was diagnosed at 8 months n took Topamax n prednisone at 1 yr she had an EEG it was irregular at 3yrs she had another EEG done n it was normal n she never had this seizure since she's six years now and her development is delayed in terms of reading n writing she functions at a four year old level other than that she is socially growing like any other child
Shannon Lovelace hello, how was he cured? Can you please it to me. My baby is 4mos and diagnosed with malignant epilepsy syndrome. Same episode with infantile spasm
Very informative!! Such a difficult time in life for the families who go through this. Been there and made it through the initial battle. Now to make it past all the lasting effects it caused.
A friends baby was just dx'd with this. I am so interested in finding out more about this very interesting disorder.... fascinating. I had no idea it waa different than regular epilepsy, but it sounds like the prognosis could be worse? These drugs are so expensive they have to have a gofundme. Any advice on how to get these meds cheaper?
My child is suffering from infantile spasms he is now 2 years old but still can't sit can't talk .... we start medication since he was 4 month old.... I'm quite depress plz pray for my child
Have you seen many cases where a child does not respond to the ACTH or Sabril? If so what was your next treatment option? My son is currently on his 3rd medicine, Onfi, and it is treating the hyparythmia (sp) but not the physical siezures.
helo Doctor how are you plezzzzzzzzzzzzz help me my son spasms pataint when he was three day then start fits now he was three yearz old gives very taretmnt but never recoverd plzz help me he is my only one son after twenty seven yearz i sea son
irumanwar hi Iru, my little nephew have the same case as your baby and I am worrying for his development too. Now he is 21 months old and can't hold the bottle , not crawling or sitting. He had his first seizure at 5 days since burned. Can you please share or let me know where I can get the advice from. Many thanks in advance from Anne Hor. My email is siew_giak@hotmail.com
my child was diagnosed with infantile spasms since birth, we did his mri but it was normal, we have done all possible tests like genetic testing, oximetry test, blood test urine tests and everything, but my child gets spasms throughout the day and night, now he is 22 months old, but he lies idle on the bed with no head extension, crawling,moving or seeing, means no milestones, i am using only levipil syrup 1.5 mg 2 times a day. we tried acth, topiramate etc, but still by child has no response, but doctor can u suggest anything for my child to save his life, pls i will be thankful to u, plse reply me
I'm a mother same circumstances as ur... my child suffer infantile spasms since birth now his spasms change into west syndrome. . He is 26 months old but spasms not control by medicine I'm giving him 4 anti epileptic ' lumark 4cc, mogadon 5 mg, epivel
Epivel 250mg, topagen but no response because doctor said Brian structure is not properly build his MRI and EEG also hope less Please keep me and my child in ur prayer thanks
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my son had his 1st infantile spasm at 6 months old and 2 days after his 6 month immunizations. Keppra, topamax and klonopin is what it took to decrease his seizures. A year after his 1st seizure he just quit having them. Hasn't had one since. He couldn't hold his bottle when he was a year old. He didn't start talking until he was 3 years old. He is now 11 years old and has remained seizure free. He is developmentally appropriate. He plays many sports and is so smart.
Shannon Lovelace so happy for your son may God continue blessing him.
Shannon Lovelace my daughter also was diagnosed at 8 months n took Topamax n prednisone at 1 yr she had an EEG it was irregular at 3yrs she had another EEG done n it was normal n she never had this seizure since she's six years now and her development is delayed in terms of reading n writing she functions at a four year old level other than that she is socially growing like any other child
Shannon Lovelace hello, how was he cured? Can you please it to me. My baby is 4mos and diagnosed with malignant epilepsy syndrome. Same episode with infantile spasm
Can you please share it to me? Thanks
I’ve had all those medicines
Topamax blocks the perspiration system.
Very informative!! Such a difficult time in life for the families who go through this. Been there and made it through the initial battle. Now to make it past all the lasting effects it caused.
My son had infantile spasms....now 25 and fine!
How old was he when diagnosed?
Plz tell me abt Ur son. What was the cause of his infantile spasm. How he is know
Was his development milestones on time?
did he get diagnosed? and how serve was it
Very interresting questions with very nice answers
Therefore a very helpfull interview
Thank you doctor
What a great video. Many thanks. Very useful. (Paeds trainee UK)
very well explained... Thank you Doctor!
I was afflicted with epilepsy when I was 3, and diagnosed with infantile spasms, when I was 7.
Dr. Don Shields was my pediatrician.
A friends baby was just dx'd with this. I am so interested in finding out more about this very interesting disorder.... fascinating. I had no idea it waa different than regular epilepsy, but it sounds like the prognosis could be worse? These drugs are so expensive they have to have a gofundme. Any advice on how to get these meds cheaper?
How often is this not diagnosed early enough or at all because new parents are not aware this even exists?
My child is suffering from infantile spasms he is now 2 years old but still can't sit can't talk .... we start medication since he was 4 month old.... I'm quite depress plz pray for my child
How is she now?
Informative. Thank you!
Hi.l'm Iranian. my son has infantile spasm. He is 27 months. But he cannot control his neck.
FASCINATING
Have you ever considered Natasha Campbell McBride approach? She is an excellent alternative and is successful with children> GAPS! FYI
My daughter is 4 months old , she is facing same problem currently ☹️
Go to child neurologist. Do the EEG and MRI.
What is her condition now? Do you have epilepsy in your family?
Does this have anything in common with Dystonia, a movement disorder in the muscles?
Hello my son also have dystonia what was u treatment please explain
That was a great video
Have you seen many cases where a child does not respond to the ACTH or Sabril? If so what was your next treatment option? My son is currently on his 3rd medicine, Onfi, and it is treating the hyparythmia (sp) but not the physical siezures.
your number please dear
helo Doctor how are you plezzzzzzzzzzzzz help me my son spasms pataint when he was three day then start fits now he was three yearz old gives very taretmnt but never recoverd plzz help me he is my only one son after twenty seven yearz i sea son
irumanwar hi Iru, my little nephew have the same case as your baby and I am worrying for his development too. Now he is 21 months old and can't hold the bottle , not crawling or sitting. He had his first seizure at 5 days since burned. Can you please share or let me know where I can get the advice from. Many thanks in advance from Anne Hor. My email is siew_giak@hotmail.com
PODERIA TRADUZIR PARA O PORTUGUES?
Sir kya is type ke child apne life pure normal bhe je sakte hai ya nahi . Sir please tell me mera bhe beta hai jo is tarah karta hai .thanks
Sajal, Where do you live? You need to go to a neurologist immediately. Take your child right now.
Sirji mere bete ka treatment delhi apoloo se chal raha hai vineet busan gupta hi se
I live in chandausi up
But sir ji me sirf ye gaanaa cahata hu ki is tarah ke bachhe apne gindge sahe se ge lete hai after treatment
Sir ji me apse contact karna cahata hu any no
my child was diagnosed with infantile spasms since birth, we did his mri but it was normal, we have done all possible tests like genetic testing, oximetry test, blood test urine tests and everything, but my child gets spasms throughout the day and night, now he is 22 months old, but he lies idle on the bed with no head extension, crawling,moving or seeing, means no milestones, i am using only levipil syrup 1.5 mg 2 times a day. we tried acth, topiramate etc, but still by child has no response, but doctor can u suggest anything for my child to save his life, pls i will be thankful to u, plse reply me
pls reply me if anyone find any treatment for this disease, iwill be very thankful to them
sohel ahmed do you mind if I can ask if he is blind?
sohel ahmed try cbd oil and a ketogenic diet
I'm a mother same circumstances as ur... my child suffer infantile spasms since birth now his spasms change into west syndrome. . He is 26 months old but spasms not control by medicine I'm giving him 4 anti epileptic ' lumark 4cc, mogadon 5 mg, epivel
Epivel 250mg, topagen but no response because doctor said Brian structure is not properly build his MRI and EEG also hope less
Please keep me and my child in ur prayer thanks
What does it come from?
An electric discharge in the brain, leading to abnormal brain function triggers an epileptic seizure.
I’ve had epilepsy since October of 1986
Please sir desha why please,,🙏🙏😢😢😢🧠🙏🙏🙏🙏🙏🙏🏼
My 9 months old baby aslo have infantal spasm
Wt we will do
Plzzz suggest mee sir
Please meet pediatric neurologist
Yes we meet
Genetic test also done
@@sridhargorla7938how is it going?
please doctor number