The risk of the changes is elevated with higher dosage. It may also be higher among children who take hormonal therapy at the same time.
In most cases, the changes are not linked to any symptoms. Specific symptoms depend on which part of the brain is affected. They can include:. Nearly continuous , involuntary jerks of the body when awake. Nearly continuous dance-like movements of the arms, legs, face, and trunk.
Impaired awareness. Irregular breathing. Irregular heart rate. Like changes in the brain MRI, these toxicity symptoms quickly resolve if vigabatrin is stopped. However, the toxicity poses a more significant risk to infants than potential vision loss. There are many other treatments for infantile spasms. These treatments are generally less well established. They are also less effective. They include:. The long-term outlook for children with infantile spasms varies a lot.
On one hand, most children with infantile spasms do not do well long-term. There are two main reasons for this. T reatment of infantile spasms is often only temporarily successful.
Many children relapse. I nfantile spasms often occur s in children who already have severe brain diseases. These other diseases can carry their own risks. They may cause developmental problems. They may also cause other forms of epilepsy. On the other hand, normal development and a normal life is possible for some children with infantile spasms. A child can develop normally if:. Infantile Spasms Action Network. The Infantile Spasms Action Network ISAN is a collaborative network of over 30 national and international entities focused on raising awareness for infantile spasms.
To learn more about the group please visit their website. Child Neurology Foundation CNF solicits resources from the community to be included on this webpage through an application process. CNF reserves the right to remove entities at any time if information is deemed inappropriate or inconsistent with the mission, vision, and values of CNF.
This is a resource provided by the U. Listing a study does not mean it has been evaluated by the U. Federal Government. The information in the CNF Child Neurology Disorder Directory is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional.
Content provided is for informational purposes only. CNF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options. Other names for infantile spasms include: West syndrome Epileptic spasms Infantile spasms syndrome Children with infantile spasms typically have clusters of short seizures. Poor outcomes include: Continued seizures and other forms of epilepsy Developmental problems Autism.
Outlook Resources Research References. Disorder Overview. Spasm timing. Spasm movements. Cluster timing. Developmental problems. Infantile spasms also can happen in babies with some types of metabolic and genetic disorders.
In rare cases, a baby's infantile spasms are caused by vitamin B6 deficiency. More and more gene mutations are being linked to infantile spasms. Sometimes, the cause isn't known. Infantile spasms are diagnosed by a pediatric neurologist a doctor who treats brain, spine and nervous system problems.
Testing may include:. Infantile spasms usually are treated with seizure medicines or steroids. However, infantile spasms can sometimes be hard to notice—perhaps only the eyes roll up or there is a small tummy crunch. They are most common just after a baby wakes up and rarely occur during sleep. We see a baby experiencing a cluster of individual spasms. In between each spasm, the baby appears to be fine—very typical of infantile spasms. It sounds so innocuous right? Like a shiver or a small jerk - if only.
The truth is that infantile spasms is an emergency. Our daughter, Adelaide, was diagnosed with infantile spasms when she was 9 months old. I was out of town when my husband called to tell me that Adelaide was doing a weird repetitive head drop and seemed to be losing consciousness each time it happened. We decided he should take her to the emergency room out of an abundance of caution. I'll never forget walking into Adelaide's hospital room, having taken a cab straight from the airport, and seeing a shadow of the daughter I had left behind.
I'll never forget the month we spent in the hospital trying to gain control of her chaotic brain waves. The side effects can be terrifying, but they are nothing compared to the damage of IS. Children with the best odds are those developmentally typical prior to IS.
Adelaide, unfortunately, was not. She was already diagnosed with a global developmental delay, hypotonia, and generalized epilepsy when we added infantile spasms to the list. Our fierce warrior passed away five days shy of her fourth birthday from a neurodegenerative disorder after having battled and overcome hypsarrhythmia and infantile spasms three times in her short life.
Each time Adelaide regressed to a developmentally fetal state and never fully worked her way back to where she was before the IS struck. One step forward, two steps back. Infantile spasms is a diagnosis of a seizure type , but is not a diagnosis in and of itself. IS is a symptom of some larger problem and, like all epilepsies, results from a genetic or acquired condition.
Fight for every scan, genetic test and second opinion available--be it through your neurologist or an outside research study. Science couldn't catch up to Adelaide, but I promised her that I wouldn't give up the fight. Adelaide was diagnosed with infantile spasms when their family moved to Chicago where Miguel starred in "Hamilton: An American Musical. If your child has difficult-to-control spasms, treatment with epilepsy surgery may be an option.
Children with infantile spasms are at risk for developing other types of seizures as they age. They also may be at risk for autism and cognitive delays.
Early diagnosis and treatment may help reduce this risk. For Patients. Contact the Epilepsy Center International Infantile Spasms. What are infantile spasms? How we care for infantile spasms The Infantile Spasms Program is dedicated to providing timely evaluation, testing, treatment, and follow-up for infants with new onset infantile spasms, refractory infantile spasms, and later-onset epileptic spasms.
What are the symptoms of infantile spasms?
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