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HIE and Infantile Spasms

© Debbie Mcpartland

My daughter, Rachel, started experiencing infantile spasms on Christmas Eve at almost six months of age. She started with just two episodes of spasms that day. Had I not known what to look for, I might have just thought that she was twitching as we all sometimes do as we are falling asleep. As it was, I wanted to believe that she was not having the seizures, we sure didn’t need any more disabilities! But the second time it happened, I had to accept them for what they were. She pushed her arms straight, pulled her legs up and her head fell forward. This happened briefly, one or two seconds of this posture, then back to normal continuing for about five minutes.

This manner of development of infantile spasms (also called West Syndrome by some doctors) was the classic presentation according to a pediatric neurologist. Infantile spasms usually begin at four to six months of age. Hypoxic ischemic encephalopathy is the biggest cause of infantile spasms, although otherwise healthy children can also develop IS. These spasms are called myoclonic seizures or sometimes myoclonic jerks. I thought of it as looking like an exaggerated startle reflex. They do not look like the classic idea of epilepsy, that is, convulsions. Following the episodes of seizures, children are sometimes floppy, sometimes not. There is a wide variety of presentation of the spasms. Sometimes only one muscle group is involved, sometimes an eye tic. Sometimes children laugh during or after a seizure.

Infantile spasms cause further brain damage. This also means that small developments you have seen in your child may disappear. If you think your child is having seizures, contact your pediatric neurologist right away. An EEG must be done to determine if what you are seeing is indeed a form of seizures. When looking at EEG results, the neurologist looks for hypsarrithmia, a pattern on the EEG that proves infantile spasms are occurring. This web page shows a hypsarrithmia pattern for a six month old child on an EEG: http://www.meddean.luc.edu/lumen/MedEd/p...

In my experience many doctors, particularly neurologists, will assume that you have no idea what you are talking about. Education is your best bet in order to advocate for your child. It is important that you be aware of drug interactions, side effects, and other available treatments so that you can question your child’s doctors about his or her treatment. A wide variety of medications can be used to try to control the seizures. Some medications used include Phenobarbitol, Lamictal, Ativan, Neurontin, Topamax, Tegretol, Depakote, Vigabatrin, Klonopin, Clonazepam, Vigabatrin, Prednisone, and any combination of the above. Phenobarbitol, although not considered by some neurologists to be effective in this type of seizure, is often tried first in small children because it has fewer side effects than some of the other drugs. Trial and error is usually used to find the right drug, combination of drugs, and dosage. The following is a link to a site which lists drug information: http://www.rxlist.com/interact.htm

The copyright of the article HIE and Infantile Spasms in Brain Damage is owned by Debbie Mcpartland. Permission to republish HIE and Infantile Spasms in print or online must be granted by the author in writing.