Welcome to Ryanne's website...

Ryanne Marie was born on Aril 1st, 2007. She was induced a few week early because the doctors were worried about her lack of practice breathing. Once she was out she was a healthy happy baby.

For the first part of her life, much to the delight of both of us, she was a happy healthy baby developing normally for her age. At 3 1/2 months my wife noticed some strange movements. Ryanne's eyes would scramble like something was passing in front of her face. After a couple more days there were more movements. She would throw her arms out sideways and lift her head a bit. She would do this multiple times in a row.

Everyone we talked with that had kids said it was normal. It was a startle reflex and most kids do it. After they got stronger and more frequent my wife knew something was wrong and took her to the hospital. The doctors in the emergency room said that her CAT scan was clean and everything looked normal. They were ready to send her home. Luckily my wife caught some of the movements on video before leaving the hospital and showed the pediatric neuroligist. He set us up for an appointment the next morning.

On August 8th, 2007 Ryanne was given an EEG and they immediately knew the cause of the problems. She was diagnosed with Infantile Spasms (West Syndrome). It is a rare but very serious form of epilepsy. So far she is Idiopathic, meaning that they can not find a cause for it.

We immediately started her on a drug called Vigabatrin. It is one of the most effective drugs with the least amount of side effects for the treatment of IS. For the first week the drug seemed to be working. The seizures were decreasing in both strength and frequency. After a week they leveled out and then started growing again.

On September 7th, 2007 they gave her another EEG and decided that although her brain activity was much better, the Vigabatrin was not doing the job. They decided to start her on a drug called SYNATCHEN, which is a much cheaper synthetic form of the drug ACTH available in Canada. It has a high success rate but has more side effects.

Every two days a nurse comes by the house and gives Ryanne the ACTH in the form of an injection. They also do some basic blood pressure monitoring and urine tests. Once a week my wife has to take Ryanne to the hospital for additional testing and monitoring.

So this is where our story begins. We will keep updating the page as time goes by.

Copyright 2007 Ryanne Marie. All rights reserved.