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Infantile spasms: What parents need to know about a rare seizure disorder

(BPT) – Your new baby starts nodding her head sharply several times in a row after naps. Soon, it’s happening more often and for longer stretches throughout the day. Your friends point to underdeveloped neck muscles—or maybe it’s the infant startle reflex? It’s unlikely anyone would immediately assume this head nodding is actually a seizure. But, in fact, some infants and children under 2-years-old can experience a rare form of seizures that aren’t easily detected but can have devastating results.

The condition is known as Infantile Spasms (IS), sometimes called West Syndrome, a rare seizure disorder that affects approximately one out of 2,000 infants and children in the United States each year, according to the Child Neurology Foundation. IS usually first appears in babies 4 to 6 months old and can potentially occur in children up to age 2. IS can be mistaken for normal startle reflex, reflux or colic, a common issue in newborns illustrated by an attack of crying and what appears to be abdominal pain. This can make IS difficult to diagnose, with most pediatricians encountering only one or two cases in their entire career.

Many children with IS appear to be in good health at birth and up until the spasms begin. These spasms may be hard to see, or they may become more obvious by increasing in frequency and length. Each spasm episode lasts for only a second or two, and they often occur in clusters that can last several minutes. Spasms typically occur when the child is waking up first thing in the morning or from a nap. Here are key signs to look for:

* Repetitive forward head nodding or bobbing
* Bowing from the waist when sitting
* Drawing up of knees when lying down
* Extending or stiffening of the neck, trunk, arms, and legs
* Crossing arms across the body as if self-hugging
* Thrusting arms to the side, elbows bent

If you believe your child has symptoms of IS, it’s important to see your pediatrician as soon as possible. Most infants and children with IS also have a chaotic brain-wave pattern called hypsarrhythmia (hips-a-rith-me-ya). While a very rare condition, if left untreated, IS can lead to significant intellectual disabilities and developmental delays. Potential causes of IS include brain abnormalities or injury, infection or other medical disorders. With careful evaluation, 70 percent of underlying causes can be identified.

It’s important be prepared and ask your child’s doctor the right questions. Here are some tips:

* Record the date(s), time(s), and description of your child’s spasm episodes
* Take a video recording of a few episodes on your phone since he/she may not experience spasms in the doctor’s office
* Document any developmental milestones, such as smiling, crawling, crying, etc., that are not occurring on schedule or are no longer happening
* Request a referral to a pediatric neurologist to confirm an official IS diagnosis and explore treatment options. The neurologist should perform a non-invasive brain-wave measurement test called an electroencephalogram (EEG) to determine if hypsarrhythmia is present.

“It is vital to talk with your child’s pediatrician as soon as you notice any spasms or abnormal behavior,” says James W. Wheless, M.D., FAAP, FACP, FAAN, Professor and Chief of Pediatric Neurology at the University of Tennessee Health Science Center. “Being prepared for this appointment is crucial to communicating key details that could help determine an accurate diagnosis. It is critical to be treated as early as possible if your child is diagnosed with IS.”

Infantile Spasms can be scary for any parent, but there is help and there is hope. The American Academy of Neurology and Child Neurology Society treatment guidelines specify that successful IS treatment must stop spasms and hypsarrhythmia. Currently, there are two drugs approved by the FDA to treat IS.

For more information about IS and available support resources, visit www.childneurologyfoundation.org.


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