Saturday, February 28, 2015

February Comes to an End

This month has been a roller coaster it seems. Mira has definitely had some solid moments and good days, but has also had some rough ones along with it. Today was a fairly typical day to close out the month for her. She didn't have too many myoclonic seizures this morning and only a few visible ones this afternoon.

But she was cranky - she was exceptionally irritable from about 3:00-5:00pm. Unhappy Hour was right on time today and in full swing. Mira seemed to have an endless appetite today too, which was a little unusual. She didn't eat much for breakfast, but made up for it at lunch and the rest of the afternoon. I don't think she refused anything I gave her after breakfast. In fact, I couldn't prepare the food fast enough.

We are still moving forward with the creatine supplementation, as it seems to give Mira an energy boost. A little less slouching and lethargy, with some increase in her interest level in her toy and her surroundings. Hasn't done a thing for her seizures, but of course, nothing has.

I am currently corresponding with her neurologist in regards to GAMT (Guanidinoacetate Methyltransferase Deficiency) to find out what Mira has been tested for and if it seems reasonable to pursue anything further. I know that Mira had an MRI with spectroscopy when she was maybe 18 months old, which sometimes is done to reveal potential GAMT abnormalities. I hope to find out more information next week.

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