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Infantile spasms awareness week
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What is Infantile Spasms
I've never heard of this, what is Infantile Spasms?
Infantile spasms is an uncommon form of epilepsy (also known as West syndrome, it was first characterized by Dr. William James West in the mid-19th century as he sought help for his own affected child). Infantile spasms is considered to be a "catastrophic childhood epilepsy" due to the difficulty in controlling its symptoms and the developmental problems that can occur as a result of IS.

What are the symptoms of Infantile Spasms?
Infantile Spasms typically begins when the child is between 4 to 8 months old, they look something like an extended startle reflex, where the arms shoot out and knees get pulled toward the stomach. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the head also jerks and may be thrown back. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series.

What should I do if I think my child has this?
If you think your baby has IS, you should contact your pediatrician right away who may refer you to a child neurologist. The child neurologist may use various tests to determine if your baby has IS. To find a child neurologist click here.

What does the Doctor look for?
Through an EEG given to the child, the doctor usually will see an unusual pattern called hypsarrhythmia (HIP-sa-RITH-me-ah) when the seizures are not occurring. This chaotic, high-voltage pattern is often helpful in confirming the diagnosis. Babies with infantile spasms seem to stop developing and may lose skills that they had already mastered, such as sitting, rolling over, or babbling which is another key indicator of the condition.

How Is Infantile Spasms Treated?
There are two FDA-approved drugs to treat IS. Vigabatrin (Sabril) and ACTH (Acthar). Other therapies are also used to treat IS, but they are not approved by the FDA for this condition. Diet and non-medication treatment options are often used if primary treatment fails. These include the Ketogenic diet, High-dose IV immunoglobulin and Surgery.

What Is the Long-Term Outlook for Babies With Infantile Spasms?
There are two different causes associated with IS, "symptomatic" and "cryptogenic." Symptomatic causes are those which can be linked to a central nervous system (CNS) infection, brain developmental abnormalities, or genetic abnormalities. When the cause or origin of IS cannot be identified, the condition is characterized as "cryptogenic."

Understanding the cause or origin of IS can impact the course of treatment selected, and the child's prognosis depends greatly on the underlying cause of the disorder. Some babies may fully recover from IS, especially those who's cause is cryptogenic and diagnosed and treated early, these children have the greatest likelihood of a developmentally normal, seizure-free outcome.

However, IS is a serious epileptic seizure disorder and most babies will have permanent delays in development and may develop other nervous system disorders including other types of epilepsy later in life.