Thursday, August 2, 2007

A Long 10 Days

Over the last 10 days or so, Sarah and I have been going round and round with neurology and Mira's dietitian with the Modified Atkins. We feel like there has been some stalling and indecisiveness by everyone, including us, on exactly how we should proceed with the diet and not complicate things further. It has been an emotionally exhausting week.

We are going start keeping a 'food diary' in order to monitor and calculate exactly how many carbs Mira is getting everyday and will adhere to the diet strictly for the next three or four days. On Monday, she will go through a 4-hour fasting period, then get updated labs drawn at CMH before lunch.

In the meantime, we are going to increase her B6 to 300mg (30mg/kg) and may increase it to 500mg (50mg/kg) daily over the next few weeks. The 'pyridoxine factor' hasn't really been ruled out yet and I think that a trial of B6 shouldn't interfere with any of her current diet issues. As with all of the other medications, it either works or it doesn't, only pyridoxine is non-toxic and safe, with minimal side effects. It is the only obvious effective treatment for kids with B6 deficiencies/dependencies.

We ultimately hope to get her off of the ineffective Lamictal and Zonegran, but are trying to keep the variables and moving targets to a minimum for now.

1 comment:

Nancy Grant said...

Wow...this is a whole lot to take in. I sure do admire your strength and your courage to share with the world the process you are going through in the care of your beautiful daughter.
Thank you,