FAQ • Spasms, Infantile

FAQ - Spasms, Infantile
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What are the chances of infantile spasms going away with ACTH treatment?

What to do about Infantile Spasms?

My son was diagnosed with Infantile Spasms at the age of 3 weeks when he suddenly started jerking. The doctors still don't know what the cause of it is, but he's developing the way children his age (3 months) are. He smiles, laughs, makes eye contact, and likes faces. No sign of mental retardation. He is on Phenobarbital. i would just like more information. I have found some stuff on the net, but I don't trust it much because my son has no brain damage nor is he retarded according to the neurologist.
He has a neurologist that he is going to. He just had an appointment a few weeks ago and they said that his brain was "a little" better, but it's still spiking a lot. he does not have full blown seizures, but rather these twitches that start in his arms and move to his legs to a point where they are all going at once, but not violently.

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What are Infantile Spasms?
Infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and early childhood known as West Syndrome. The onset is predominantly in the first year of life, typically between 3-6 months. The typical pattern of IS is a sudden bending forward and stiffening of the body, arms, and legs; although there can also be arching of the torso. Spasms tend to begin soon after arousal from sleep. Individual spasms typically last for 1 to 5 seconds and occur in clusters, ranging from 2 to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age 5, but are often replaced by other seizure types. West Syndrome is characterized by infantile spasms, hypsarrhythmia (abnormal, chaotic brain wave patterns), and mental retardation. Other neurological disorders, such as cerebral palsy, may be seen in 30-50% of those with IS.

Is there any treatment?

Treatment with corticosteroids such as ACTH (adrenocorticotrophic hormone) and prednisone is standard, despite the risk of serious side effects. Newer antiepileptic medications, such as vigabatrin (currently not approved for use in the US) have shown some efficacy. A small minority of children has secondarily generalized spasms as the result of cortical lesions (areas of damaged brain tissue). Removal of these lesions may result in improvement.

What is the prognosis?

The prognosis for children with IS is dependent on the underlying causes of the seizures. The intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms. Spasms usually resolve with or without treatment by mid-childhood, but more than half of the children with IS will develop other types of seizures. There appears to be a close relationship between IS and Lennox-Gastaut Syndrome, an epileptic disorder of later childhood.

What research is being done?

The NINDS supports broad and varied programs of research on epilepsy and other seizure disorders. This research is aimed at discovering new ways to prevent, diagnose, and treat these disorders and, ultimately, to find cures for them. Hopefully, more effective and safer treatments, such as neuroprotective agents, will be developed to treat IS and West Syndrome. (+ info)

Infantile spasms and autism?

Does anyone know where to find information about infantile spasms causing autism?

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Hi Molly
My son was diagnosed with AD-HD border line autistic, we went the food route as food nourishes our brain, the brain being the cause of the AD-HD and autism, neuro pathways etc. blocked he is know a healthy, occasionally happy (he's a teenager) kid, if he eats junk we have serious episodes with him so the food route works for us, hope you find what you are looking for! (+ info)

My son is 6 months old. The neurologist thinks he might have Infantile Spasms aka West Syndrome.?

For the past month he, at times, tilts his head back, rolls his eyes back and extends his arms. Does anyone have any experience with this. I am really worried. Thank you

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I saw something else like that on a Discovery Health show. They actually had video taped their child doing what your describing. They put their child on this shot and her spasms went away almost immediatly. She also had a disease called Moya Moya disease which brought on her spasms. Moya Moya means puff of smoke because that is what it looked like in her brain. I would defintely look that up, and see if your child has any of those symptoms. The earlier the detection of any problems, the better his outcome will be. (+ info)

is my son having infantile spasms?

could someone please view the link below and tell me what u think.
my son has been doing this head nodding for the last 4days and is waiting to have EEG on tuesday to check for infantile spasms. would be greatful if anyone who has a child with this condition could tell me what you think.
thanks
http://www.youtube.com/watch?v=b07zY8dchDs

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(+ info)

Infantile spasms advice please?

Hi, my baby was took into hospital at 7 months old following a seizure at home, he was in hospital for 11 days and we were told he has a form of epilepsy called infantile spasms/wests syndrome, currently we are trailing medication to see what works for him.
I dont not know alot about this as i know no one who has it, i was wondering of anyone who uses these forums is going thro the same thing?
My son also doesnt spoon feed as he cant swallow anything as it all makes him choke i have two older children who never had any problems so im unsure why he is doing this!
please feel free to contact me if there is anyone else out there, thanks

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(+ info)

Any hope for infantile spasms? Helpful information?

I'm a first time mom, and my 7 month old son has been diagnosed with infantile spasms. Everything I've read on the internet has done nothing but scare the hell out of me. It says there is an 80% chance that he will have mental retardation. This is so heart breaking for me as I'm sure it is for any parent. I cry and cry and cry despite all the support from my family. My son will probably be starting a treatment called ATCS. I was just wondering if anyone has been through anything similar. Did this treatment help? I've already looked up all of the side effects and everything but I'm just curious about whether or not it has actually helped. My sons spasms have NO cause. No head trauma, meningitis, trauma at birth, etc. I'm so afraid for him. He already seems to be alot less happy then he used to be and it's breaking my heart. Any advice would be greatly appreciated.

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There's an 80% chance of retardation? I think you had better speak to his doctor to get better information. I know several children who have had the ATCS injections for infantile spasms, and they are perfectly fine today. Maybe it's children who have infantile spasms that go untreated who have an 80% chance of having cognitive delays. Also, remember that developmental delays are NOT synonymous with retardation. Try to relax, Mom - I know that's easier said than done! (+ info)

ANY hopeful information regarding infantile spasms?

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My daughter, who is about to be 3 in April was diagnosed when she was six months old. She is thriving! She is just like any other two year old...Don't give up hope. We were given the same statistics you have been given. We went through the ACTH injections (make sure they give you the topical lidocaine to dull the injection site-makes it much better) and looked anxiously forward to each EEG. Amazingly, we experienced none of the problems I've read associated with the ACTH injections. Within two weeks her seizures subsided.We also gave her prednisone and and a crushed B6 vitamin in applesause, pudding, etc. She gained a lot of weight and had some minor developmental delays ...but she caught up with physical therapy. Her neurologist released her in less than a year saying she was doing "wonderful." So...hug that baby, talk to him, hold him, there is hope. I know how you are feeling!!!! I will be praying for you and your son. (+ info)

My 7 month old daughter has what looks like infantile spasms but EEG showed nothing. What could this be?

My lil girl has been to cardiologists and neurologists and they cant find anything. She has what appears to be seizures .Her knees curl up her hands clasp in front of her and eyes glaze over.They mimic infantile spasms . She is developmentally advanced by a couple months and has just recently started waving saying hi and at 5 months says Mom. The Dr's are puzzled now she has to do a 48 hr study at the hospital . Any one have a clue what this could be?
She had 3-4 of her seizures or spasms while hooked up to the EEG and nothing. She hasnt had an MRI
She doesnt show any personality changes and usually its when she is tired. She screams out as she is coming out of it. She seems to have a high pain tolerance.

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I would ask them to look at her tummy, my daughter had something similar and she had a problem with her digestive system, she eventually grew out of it with no treatment, it was something to do with her gut not being able to digest proteins as it was immature. She was tested for epilepsy and other neurological problems until a doctor at the hospital decided to test her gut. (+ info)

Is West Syndrome (infantile spasms) hereditary?

A family history of infantile spasms is uncommon but as many as 17% of patients may have a family history of any epilepsy. (+ info)

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