Treatment Plans for Cryogenic Infantile Spasms (West Syndrome)

Following the advice we received from David Prendergast, Emma and I are trying to piece together the treatment plans used for treating Cryptogenic Infantile Spasms.

What is a Treatment Plan?

For most conditions, once the condition has been identified the doctor treating it will follow a list of known treatments which has been predetermined to be successful in treating the condition. But everyone is different, and not every treatment will work the same way on every person. So the treatments and ordered, with the treatments which appear to work on most people, with the least side effects coming first, and the treatments which were not as successful and / or have greater side effects coming second.

Treatment plans per country?

Treatment plans can vary from doctor to doctor, hospital to hospital and country to country. Understanding the different treatment plans used in different countries helps us all to understand the possible options that are available.

First / Second Line?

When treatments are ranked in a treatment plan they are grouped into “lines” or tranches. First line treatments are the treatments most likely to work, with the least side effects and the second line contains the treatments which are less likely to work / contains more side effects.

What are we trying to do?

Each country has their own guidance and advice for treatment plans. By gathering this information together we as parents of children with Infantile Spasms will have a better understanding of the treatment options which are available to us.

I’ve put together the diagram above based the research I’ve come across. It’s not perfect and I’d really appreciate your help in improving it. - If you have information on a treatment plan, or the treatments you received let me know so I can update the diagram. I hope that this diagram will not only help us, but also help other parents.

Description of the Drugs

Most of the drugs listed here where obtained from the Infantile Spasm (West Syndrome) Medication on EMedicine.