INFANTILE SPASMS: KNOW THE SIGNS AND TAKE ACTION
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- Опубліковано 21 лип 2024
- Infantile spasms, also known as West Syndrome, is a rare and particularly severe epilepsy syndrome that typically begins within the first year of life. Identifying, diagnosing, and treating infantile spasms is critical to preventing cognitive and developmental delay. Sadly, many primary care doctors and parents alike are not familiar with the signs and symptoms of infantile spasms.
Amy Brin Miller, Executive Director of the Child Neurology Foundation, discusses how to tell if a baby is having spasms, steps parents should take if they suspect their child has infantile spasms, and why early intervention is critical.
Learn More: www.cureepilepsy.org/infantil... - Наука та технологія
My son was diagnosed with infant spasms at 2 months. He is 25 leave a perfect life. He was in the hospital for a month when he was 2 months. Now he gets auroras that scare me.
You are so correct in b.c all of your statements. 19 years ago my son had IS, 3 weeks to observation to treatment. I did take a video and waked in to PMD office with full sise camcorder on hip. He had one in that office by luck and another the next day in the peds office. With the diagnosis I felt like the world turned upside down and spinning in the opposite direction. I cannot begin to describe that overwhelming feeling of doom and anguish that came over me sitting in that office. I couldn't even hear past the statement of mental retardation. I went numb, my husband and I had to then take our perfectly gorgeous baby and drive 35 miles home, I threw up several times and literally wanted to lock myself in a room and never come out.
I was told the same absolutely devasted news that my child would by 60-90% moderately profoundly mentally retarded when he was 5 mths old. And this was in Minneapolis at Children's Hospital by a very well respected and experienced neurologist. Negative MRI, hypsarrythmia on EEG, he was in the idiopathic or cryptogenic group, meaning no underlying cause was found for Infantile Spams or West's Syndrome as it is known outside the US.
NOW THIS IS EXTREMELY IMPORTANT. YOU MUST, MUST, MUST HAVE COURAGE, TIME IS OF THE ESSENCE BECAUSE WITH EACH SEIZURE THERE IS A REGRESSION OF SKILLS. Anybody that would tell you differently is not respecting how devastating this condition can be. This is not a common disorder, so it's not reaearched a whole lot like other forms of epilepsy is, zo getting on top of the seizures is imperative, especially according to what parents see. NO PUSSYFOOTING AROUND. COME OUT SWINGING WITH THE HEAVY ARTILLERY. That means, ACTH or Acthar gel, same thing. INJECTABLE. HAVE COURAGE, to do this. If this seems terrible, I want you to think of all the parents at this very moment thst there is nothing more that can be done, znd your child will die. YOU ARE NOT IN THAT SITUATION!! Take strength in that and have the courage to give that injection and send those seizures directly to hell where they belong. Klonoprin and other sedative like meds are ok for other seizure disorders, but they don't carry the devastating brain destruction that IS does. Vigabratrin or Sabril, same med, can work but it has a horrible side effect, it permanently causes tunnel vision. ACTH causes kids to blow up like a balloon, acne, super irritability, diarrhea, hypertension, rectal yeast overgrowth, elevated glucose, bacterial pneumonia, and it's injected intramuscular in the thigh. BUT HERE'S THE GOOD NEWS, ALL OF THAT IS TEMPORARY. WHEN ACTH is weaned off those side effects disappear. Treatment lasted 4 months total for us. He was having 3-4 episodes per day when started, and after 1st injection of ACTH no more and never resumed. COURAGE PEOPLE!!!!
Now why my son has some learning disabilities, HE CAN DRIVE! He has his own car, works at a grocery store and will be starting a community college program in a few months, his IQis 88. Now can you imagine if I has chosen Vigabratrin for him, he would not be able to drive, if I had done Klonopin or Keto diet where seizures were not completely controlled how much more debilitated he may have become? Who knows, but do you want to take that chance. In my opinion ACTH is what should be used initially to treat IS, STOP THOSE SEIZURES IN THEIR TRACKS IMMEDIATELY. AND DON'T LET ANY PHYSICIAN TELL YOU OTHERWISE. It should be used with a diuretic like furosimde, an anti hypertensive like atenolol or vasotec, and antifungal like diflucan, and an antibiotic for pneumonia, you should have a pediactric blood pressure machine at home and also urine test strips for glucose monitoring. Some meds may not have to be given everyday.By default you have now become a warrior, that is what I have learned in the last 19 years. Start occupational therapy, physical therapy, speech therapy right away, DONT LET ANY PHYSICIAN TELL YOU OTHERWISE. My son has been in the school program since age 7 months, first in home, and then added clinic based services, at the same time. He was a fulltime job. My son was discharged from neurology at age 5, because he was basically a missuse of the pediatric neurologist's time, those appts are needed for kids that have real ongoing issues and need meds after all. This highly respected neurologist said, in my 25 years of practice I've never seen a child with IS do this well cognitively and functionally, I got a little loud and defensive. This same MD had told me to not seek interventional services till kindergarten. I did the exact opposite not only for Lucas but for myself. I had to know that I was doing all that I possibly could and if Lucas was to be mentally retarded as predicted, it wouldn't be because I hadn't done everything in my power to decrease the devastating effects of IS. I reminded the MD That my son's progress is first due to ACTH stopping the seizures from the first injection and long term because we didn't let any opportunity pasd him by for improving the outcome. I told him please remember that the next time parents come in and are given the diagnosis of IS and those anguishing statistically prognosis.
While my son has been extremely fortunate to be in the cryptogenic group and responded immediately to ACTH, this will not be the outcome fore all children, take faith in doinh all you can to disrupt what IS is predicted to do. Only do other meds and keto when ACTH has failed, do keto in conjunction with ACTH. Don't give Vigabratrin and permanently damage your child's sight uneless it's a court of last resort. GIVING A PILL OR LIQUID ORALLY IS EASIER, I BEG YOU TO DO ACTH FIRST. It's the strongest most effective drug stop seizures hands down. GIVE THAT INJECTION AND COME OUT BLAZING.
I live in Philippines. How will I get ACTH? My son has IS. It's getting worse 😭 Please help. Every day we have so many attacks. My son is turning two this July 27, 2022. I'm so scared every time that he has some attacks.. It makes him loss his consciousness for about 1 sec to 2 secs. I'M REALLY SCARED FOR MY ONLY BOY 😭😭😭
My son responded to this injection ...he is 15 month old...will he able to catch all developmemtal milestones...he is improving
@@humamir9349 how is your son doing?
@@manny2door he is improving....I have hope one day he will be fine...My Allah will cure him
@@humamir9349 thank you for responding! I will keep your son in my prayers!
This was informative but I wish you had provided some videos as reference for the different ways it can present itself.
You can find a video showing an example of infantile spasms as well as more information on the CURE website here: www.cureepilepsy.org/infantile-spasms-video/
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@@CUREepilepsy f
Don’t vaccinate your kids
@cureepilepsy can I send a Video of my baby? She doesn’t jerk her hands like that but her eyes/eyebrows go up. She also stares and doesn’t breathe for a second. Acts really weird. 😢
My baby is showing lots of the signs but I’ve been to the doctors and showed videos but they have just sent me away saying I’m just a worried first time mum
My child has West Syndrome Epilepsy. How can I get help?
how often do these spasms occur in a day?
July 14
Away
If it happens only once and not in clusters, would it just be a reflex instead? What would be the difference between a sudden jerking reflex vs the spasm?
Any update on this question?
@CURE epilepsy ?
I’d like to know this too
Tuberculosis
Me
1997
A
Y
You
B
Hala Aunt
Seizures
Salah fulmor Noah
E
My son has infantile spasms. We live in Philippines. He has some clusters of head bobs and I see that he loss his consciousness within one sec or two. I'm crying right because I noticed this before but I ignored it because I thought it's just a jerky movement.. but now it's getting worse. He's now taking Keppra as his medicine for about 2 weeks now. My baby is turning two this July 27, 2022. I'm asking your help about the case of my baby.. hope you'll notice me.
Wala ka bang pedianeuro?
Gumaling na ba sya?
How's your baby now... please tell me...
I believe this is what my son is suffering from. Is there any holistic form of treatment that will help this condition, does anyone know?
Sincerely, "A Concerned Parent"
Autumn Reign no
No Autumn, there is no information available showing holistic medicine as a treatment for I.s. Please remember time is of the essence and every spasm is causing brain damage. Go see a doctor or hospital immediately
Seizures Mean you Noah
Brain
Baby 0 seizures
Dad Moe salah dad Hospital going
My 8 month baby doses a shivering movement. Could that be I.S?
Ru Bee09* No
I have the same problem with 8 month did you find out?
Took her with a child neurologist and he told me it was noting . she's almost 2 now and she stoped doing it
@@gtochick13 did they mention anything about shudder attack/syndrome?
@@ellaj754 no she fine now
Ok, but you waited TWO months between your baby having a first seizure (at 7 months) to getting diagnosed (at 9 months)? Why? Your baby has a seizure, you go to emergency, immediately. Period.
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Mustafa deleted Noah Salah
Baby seizures