What Are Infantile Spasms

What Are Infantile Spasms?

Infantile Spasms seems innocent enough, at first glance. Most people don't think of epilepsy when they first hear or see "Infantile Spasms", but the name is very deceiving. When Daphne first had her seizures (looking frantically online, but not knowing, of course, what was happening to her) I ran across the term Infantile Spasms and thought to myself, "Wow, wouldn't that be great if that's all Daphne had?" Of course that thought flashed only for an instant before I read the rest of the story, and learned, to my horror, that Infantile Spasms was considered a cataclysmic seizure disorder that was often refractory to antiepileptic therapy, and usually resulted in mental retardation.

At that point, I wanted to believe that Daphne couldn't possibly have this disorder, but the more I read, the more I knew it was exactly like what Daphne was experiencing.

Infantile Spasms is the only seizure disorder where the seizures occur in clusters. They typically affect infants and children from 3 months old to 2 years old (but can occur earlier or later in life), and can look either like an exaggerated startle reflex - where the arms flail outward - or a "salam bow" where the trunk flexes forward and the arms and legs draw inward. This usually happens only for an instant, but the child will typically cry in between these spasms, which will occur over and over again. Some children may experience them hundreds of times a day. Infantile Spasms (also known as West Syndrome) usually has a characteristic EEG pattern called Hypsarrhythmia. However, hypsarrhythmia is not always present (as in Daphne's case).

The seizures typically are more severe upon waking up or falling asleep, and also usually cause an arrest or regression in development. In fact, when Daphne's seizures began at three months old, Daphne regressed developmentally. She no longer made eye contact, stopped cooing, and - while on ACTH - lost her head control, among other previously acquired skills. It wasn't until Daphne became seizure free, many months later, that these skills were truly regained

While devastating, Infantile Spasms, like a fever, is really only a symptom which can have many causes. These range from a metabolic insufficiency (like B6 deficiency) to birth injury to genetic syndromes. Because of this, seizure control comes differently to every Infantile Spasms sufferer. For Daphne, Vigabatrin (a non FDA approved anti-epileptic medicine) gave control. For others, ACTH, Topamax, Depakote or a wide array of anti-epileptic treatments may provide better control.

That's what makes this disorder so tough. There is no set of rules, and very little is known about the exact mechanism that causes Infantile Spasms. Basically, it is trial and error, and some patients will never achieve real seizure control, and some will never be diagnosed with a definitive cause for this seizure disorder.

Also, some parents have found that their children's seizures and/or development improve with alternative therapies like HBOT (Hyperbaric Oxygen Therapy), Craniosacral Therapy, Accupuncture, Homeopathy, Herbalism, Nutritional Supplementation/ Diet restriction etc. Many parents experience resistance from their children's doctors for trying alternative medicine. This seems odd, considering that even conventional medical wisdom can be confounded by Infantile Spasms.

This synopsis doesn't even begin to express what a tough disorder Infantile Spasms is for parents to deal with. There is, however, a wonderful online resource for parents of children who suffer from Infantile Spasms. The Yahoo Group, Infantile Spasms has been invaluable to me. There is such a wide range of outcomes for this disorder. The site has helped me learn to cope, provided me a forum to vent my frustrations, and allowed me to become knowledgeable about the wide range of available treatments. There are many people from the site whom I have never met, but who I consider my friends. No one with a child who suffers from Infantile Spasms should be without such a support group.

Here are some other links to Infantile Spasm related websites.

Infantile Spasms The aforementioned Yahoo Group site. Wonderful! If you have a child with Infantile Spasms and haven't been to this site, please go visit it now!!!

Broc Bartenhagen Broc is a child who has long suffered from infantile spasms. It was a video of Broc having a seizure that convinced me that Daphne was suffering from the same disorder.

Infantile Spasms Information Page: National Institute of Neurological Disorders and Stroke (NINDS) Decent general information about Infantile Spasms. Pretty discouraging for parents, though.

Emilie's Story; Living with Infantile Spasms

CaringBridge.org - jason Daphne's future boyfreind's website :) Another Infantile Spasms sufferer, with an incredibly inspiring story.

Alex's Story A story of Infantile Spasms treated with surgery

Monty McCoy Chavez Monty Chavez's story

harrybio.html Dr. Chugani's webpage. Dr. Chugani is an Infantile Spasms specialist who has done numerous studies on curing Infantile Spasms through cortical resectioning (a surgery).

Infantile Spasms : Diagnosis, Management and Prognosis Book about Infantile Spasms. Says a lot about the fact that little is understood about them :) Still, it is the only book, still in print, that I've found dedicated to Infantile Spasms. If interested, you may find a better deal on eBay than on Amazon.com

Seizures and Epilepsy in Childhood: A Guide Very informative book about epilepsy by the doctors at John's Hopkins. It does include some information specifically on infantile spasms.