Saturday, August 15, 2015


Mira has been slowly coming out of her tired stretch, with each passing day showing a bit more energy. I spent Thursday and Friday in Louisiana, getting back late last night, which left Sarah to get the kids acclimated and readjusted to school. The bus schedule seems to be all over the map the first few weeks, with the driver and para trying to work out their new routes and get accustomed to new kids. Mira's first full day of school was yesterday and we haven't heard the report back from her teacher, as her notebook was accidentally left behind in the classroom.

Today she was in a pretty decent mood, even lasting through an entire restaurant sushi meal. That is somewhat of a rarity, especially after a tiring week of getting adjusted to the first week of school. She took a small nap this afternoon and woke up fussy for a bit, but was over it quickly. We went for a couple of walks around the neighborhood, which she (and Jonah) enjoyed a ton - Mira was vocal and kicking all the way down the block both times. After Mira was over her fussy spell, she played for a bit and then became very vocal. She was making these extended screeching noises, which are difficult to explain without actually hearing them. She remained in a positive and energetic mood the rest of the day. Not a ton of myoclonics today or for that matter, for the past few days, just a few here and there. No clusters and no major tonic-clonics.

I am very grateful when I hear from parents of children suffering from seizures, that offer support, compassion, and information. I have found over the years, that the parents are often much more informed when it comes to research, potential therapies, and the latest news in regards to epilepsy. Like most parents, they are consistently searching for any information they can find that might potentially help their child. I don't mean this to sound condescending and certainly do not intend to discredit any medical professional, but we as parents realize that neurologists are only human too and have their limitations. They typically see hundreds of children in clinic and trying to remember the particulars of any one patient can be difficult, if not impossible, based on such a limited interaction, which for us, is every six months. Parents on the other hand, witness our children struggle with neurological issues, every single day, thus we know our child better than anyone else, thus we become the experts.

It's this exchange of information between parents that I am so thankful for, as I am often given relevant ideas that might help Mira. I wanted to thank Laura for contacting me and giving me such a fantastic synopsis and overview on MTHFR - it was much appreciated!


Reagan Leigh said...

Amen! Neurology is a good way to get over your doctors know everything mindset! I can't tell you how many times our neuro left the options up to us...we can try this med, this one, or this one...which would you like to try first?!?! (And this was the head of the dept...supposedly the best guy you could see!) They're all just guessing because every child (person) is different and they all respond to meds differently! :(

Marc said...

It's pretty scary if you think about it. I asked our first neurologist if he was just throwing a dart at the map and seeing what sticks and his reply was 'yep'. Nearly all of these AEDs just mask the symptoms, without getting to the root of why someone is having seizures. You are so right too - every child is different and responds differently!