Sunday, January 8, 2012

One week down of steroids...

Edmond had a difficult 6th and 7th day of treatment, but his irritability for this treatment is so much better than the month of injections we had to do in November. He is sleeping well through the night. His spasms have decreased to almost none. During the week he had one spasm on Wednesday and one on Saturday morning which was short, less than 3 minutes. This is a significant response to the prednisolone, before this treatment he was having 3-5 spasms a day and usually every time he woke up. Unfortunately he still hates the taste of the prednisolone, even with added flavoring. I am using all my tricks to get it down him without him throwing up, but it is still difficult to do twice a day. The tapering dose began today, but it is a slow taper so we will have to continue to deal with administrating this drug for another 6 weeks!!! They don't tell me this stuff when they first gave it to him ( I thought it was going to be less than 2 weeks from start to finish), so I'm a little frustrated, but I know it will go by fast. Six weeks is better than the alternative year long treatment so we are definitely continuing to ask God to intervene and cause this treatment to work to get rid of the spasms. On a great note, Edmond has not had any seizures since the short one he had on December 28th, this is a major blessing. We have an eye appointment this Tuesday and I also just received a voicemail from the newly assigned physical therapist who is going to begin with Edmond. Will update after these appointments are completed.

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