This page is dedicated to our son Connor and all the other parents of children with West Syndrome. Hopefully it will provide enough information to take away that lost feeling that we had, and provide a way of getting past the disability and moving on to the wonderful child that you have.

Connors Page


West Syndrome:

    It is possible that West Syndrome may not be the name that you expected. Your physician may have given you another name for this disease. Please check the synonyms listed below to find other names for this specific disorder.

Generalized Flexion Epilepsy
Infantile Epileptic Encephalopathy
Infantile Myoclonic Encephalopathy
Jackknife Convulsion
Massive Myoclonia
Salaam Spasms
Infantile Spasms (this seems to be the most popular naming for the diagnosis)

    Infantile spasms are a special type of epileptic seizure, usually first affecting children less than one year of age. They were first described by Dr West, a nineteenth century Kent general practitioner, in his own son. In Great Britain over 150 children develop infantile spasms each year.

West Syndrome is a rare form of infantile spasm that occurs very early in the development of an infant. Unusual brain wave patterns occur (hypsarrhythmia) and possibly mental retardation. The spasms that occur may range from violent jackknife or "salaam" movements where the whole body bends in half, or they may be no more than a mild twitching of the nose or mouth. These spasms usually begin in the early months after birth and can often be helped with medication. There may be many different causes for the spasms. Neurological testing will be helpful in determining the cause.

    In most affected children no neurological problem will have been suspected until the infantile spasms start. Tests will diagnose neurological conditions in some of these children. A few examples are: tuberous sclerosis (a condition which affects skin pigmentation and also brain development) and cortical dysplasia (in which there has been faulty development of only a small area of the brain). In some children with infantile spasms no cause is found despite the most thorough testing. Much remains to be discovered about what causes this problem.

Click Here to view an article on Infantile Spasms by Pediatric Neurologist Ted Guarino.

It follows from this that each child with infantile spasms must be regarded as an individual. The precise tests that will be necessary and the best form of treatment vary from one child to another. How well children do, from the point of view of their development and ability to overcome epileptic seizures also varies enormously. In some, future development is normal and seizures stop altogether. More often there are areas of development which remain slower than expected for the age of the child, and seizures continue and require treatment. However, it is important to re-emphasize how different each child with infantile spasms is from the point of view of his or her future development

 

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