Infantile Spasms
It is so rare, under-researched, and under-exposed - Aubrey Miller
image by: UK Infantile Spasms Trust- UKIST
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Infantile Spasms-What is it?
Although the name sounds simple and perhaps the child's spasms or seizures may seem minimal they are anything but that. These seizures are developmental. They start during a specific developmental stage of a child's life and continue until about the age of two and then turn into other epileptic issues. These seizures generally cause developmental regression in the child. Milestones they may have reached are lost and they quickly fall behind.
Most children's (70%) spasms are symptomatic. This means that the seizures are tied to something else such as cerebral palsy, birth injury, brain injury, genetic disorders, autism, tuberous sclerosis etc...The outcome for this type depends a…
Resources
Infantile Spasms Action Network
Today, this group – the Infantile Spasms Action Network (ISAN), convened by CNF – has grown into a collaborative network of 26 national and international entities focused on raising awareness for infantile spasms.
Infantile Spasms Project
The Infantile Spasms Project is a program of the Division of Pediatric Neurology and Department of Pediatrics at the David Geffen School of Medicine and Mattel Children's Hospital at the University of California, Los Angeles (UCLA). The information presented here is intended as a straightforward and organized guide to parents and caregivers of children with infantile spasms, as well as practitioners.
UKIST
The UK Infantile Spasms Trust (UKIST) provides a network of support to families with children affected by the rare seizure disorder infantile spasms, also known as West syndrome. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little known condition, which can be very difficult to recognise – but potentially very damaging if left untreated.
Infantile Spasms Are An Emergency
This public service announcement produced on behalf of the Infantile Spasms Action Network as part its Infantile Spasms Awareness Week 2018 campaign. It sends a clear and sober message to parents and clinical providers that infantile spasms should be considered a medical emergency, requiring immediate diagnosis and treatment.
Infantile Spasms: Little Seizures, BIG Consequences
Infantile spasms is arguably the most interesting, but also the most enigmatic, of all the epilepsy syndromes. Infantile spasms was one of the first epilepsy syndromes described.
Infantile Spasm: A Review Article
Infantile spasms (IS) are a unique form of seizure disorder that their occurrence is almost entirely limited to infancy (the first year of life) and they are refractory to conventional anticonvulsant drugs.
Infantile Spasms
I've gone back and forth about posting this today and that's because I want to do the public service, but I have to admit that dredging up infantile spasms awareness gives me a lot of emotional distress. Sophie was diagnosed with this rare form of epilepsy when she was three months old after previously normal development.
Infantile spasms (West syndrome): update and resources...
IS imposes a significant ongoing challenge to the child’s family and caregivers, as well as to health care professionals. Early detection and referral to a pediatric neurologist for clinical evaluation and prompt effective treatment is strongly recommended as it may improve prognosis.
Mum Films Daughter’s Seizures To Alert Parents About ‘Infantile Spasms’, A Rare Form Of Epilepsy
It's a really complex condition and it's been hard to explain to friends and family, so we've decided to put together our experience with it in the hope it may help other families in the future. It has been the scariest week of our lives...
What is Infantile Spasms?
Children with infantile spasms represent one of the greatest challenges in pediatric neurology.
Management of infantile spasms
West syndrome, or infantile spasms syndrome is a frequently catastrophic infantile epileptic encephalopathy with a variety of etiologies. Despite the heterogeneous nature of causes of infantile spasms, a careful diagnostic evaluation can lead to diagnosis in many patients and may guide treatment choices. Magnetic resonance imaging (MRI) brain remains the highest yield initial study in determining the etiology in infantile spasms.
Study Finds Infantile Spasms Misdiagnosis and Treatment Delay Can Lead to Intellectual Disability, Autism, Death
A form of epilepsy, infantile spasms are also known as West syndrome. Seizures consist of a sudden stiffening of the body, arms, and legs and head bends forward. Each seizure lasts only a second or two, but usually occur in a series and are most common just after waking. Many children with infantile spasms develop other kinds of epilepsy.
Infantile Spasms-What is it?
This is defined as a "catastrophic childhood seizure." Although the name sounds simple and perhaps the child's spasms or seizures may seem minimal they are anything but that. These seizures are developmental. They start during a specific developmental stage of a child's life and continue until about the age of two and then turn into other epileptic issues. These seizures generally cause developmental regression in the child.
Baby Bradley and his Fight with Infantile Spasms
This is our journey with Infantile Spasms. What a set of crazy words. It still hits me like a ton of bricks; "Your son has been diagnosed with Infantile Spasms".
Chase's Journey with Infantile Spasms
At first I thought Chase was ramming his head into me when I held him, but then realized he was having those head drops they had explained. I had never seen anything like it. Tom thought when it happened it looked like he had just been punched in the stomach. These episodes would happen mostly after he woke up in the morning or from naps, accompanied by his eyes kind of scrunching and tearing up and he would get very panicky and cry as if in pain. He seemed to be conscious but his eyes would dart around and afterwards he would fall asleep exhausted. They would happen in clusters- sometimes only 2 or 3 in a row, sometimes up to 12.
Eddy's Journey with Seizures and Infantile Spasms
The day before his first birthday, our sweet little boy Eddy had his first seizure. This blog describes his journey with seizures and infantile spasms.
Infantile Spasms--Bridger's Story
When Bridger first starting seizing he honestly looked like he was trying to poop. It seemed so natural yet it became repetitive and that is what soon worried me. I asked people's opinions and they said it just seemed like he was doing those cute baby reflexes. I thought maybe I was crazy! I brushed it off until I noticed his eyes. His eyes flickered to the right, I knew something was wrong, This all happened within like 48hrs!
Mighty Man Marek
Our little superhero's fight against Infantile Spasms.
Our Journey with Infantile Spasms
I’ve read some blogs by parents dealing with their child’s diagnosis of Infantile Spasms and have felt helped by them sharing their struggles and successes. I want to do the same. My hope is to help other parents who are suffering to know that they aren’t alone, and to maybe even inspire a few doctors out there to become better at treating these remarkable little babies.
Our journey with infantile spasms
Our beautiful daughter, Emily, was diagnosed with infantile spasms in dec, 09. Our world has been turned upside down and this is our story...
Savanna's Journey
Infantile Spasms. partial epilepsy. surgical treatment. ASD.
The Seize Hope Project
There is hope for babies born with infantile spasms. I remember when we were in the midst of I.S. It was a terribly sad and depressing time. I remember frantically doing research, trying to educate myself about the condition, what medications and treatments could be used to help, and trying desperately to find just a glimmer of hope. But, everything I read seemed to re-iterate the same awful fate. Thankfully, since then, I’ve learned there are a wide variety of positive outcomes. But, the parents of recovering kids are busy moving on, so they don’t frequent the forums like they did when their child was sick. Sadly, that means that those in the midst of I.S., those who desperately need a glimmer of hope, don’t get it when they need it. I would like to change that. I would like to “Seize Hope” for all the families of I.S. babies. That’s why I’m starting the Seize Hope Project.
7 Things I learned when I came out of the hospital fog
So. You're sitting in the hospital. Whether it is the waiting room, ER, or any other wing. Your child is either next to you or in your arms and you are thinking to yourself "how did this happen?" Maybe your mind is blank. Maybe you are sorting through the horrors of the "what ifs" and the "what nows?" You are lost.
Epilepsy Foundation
The first description of infantile spasms was by English physician Dr. W. J. West, more than 170 years ago. His description is as accurate today as it was then and is very poignant since he was describing his son.
NINDS
Standard first-line therapies for IS include several forms of hormonal therapy (including adrenocorticotrophic hormone [ACTH] or prednisolone) or the anti-seizure medication vigabatrin. These treatments are high effective but have serious side effects...
NORD
West syndrome is a constellation of symptoms characterized by epileptic/infantile spasms, abnormal brain wave patterns called hypsarrhythmia and intellectual disability. The spasms that occur may range from violent jackknife or “salaam” movements where the whole body bends in half, or they may be no more than a mild twitching of the shoulder or eye changes.
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