1- Audrey has idiopathic generalized/focal epilepsy. Below is a link that explains both pretty straight forward.
http://www.m.webmd.com/a-to-z-guides/types-epilepsy?page=2
She also has prolonged seizures-status epilepticus.
2- We didn't take her off of her medication (after much debate within the drs and ourselves) they felt like it would be to much of a risk that Audrey could return to her seizure routine of every two weeks and also a greater chance of having to use another medication. Short version- "if its not broke- don't fix it."
Yea for Audrey! We are officially at 3 1/2 months without a big seizure! (We think she had one 2 weeks ago when she was sick and teething- but we could be wrong...) so we're still counting!! Small stuff here.
3- They agreed with Dr f from primary's that we should proceed with a specific genetic test to see if she has a gene mutation (scn1a or 'Dravet syndrome') there are many variations/syndromes that go along with this gene... It will just help us learn whether or not her seizures are a result of a genetic disorder or not. If not, we can meet with the geneticist to see what other tests we need to run. (Geneticist is about a year out)
4- There's still a small chance she could grow out of it, but it's more like 5-10%. Just depends on genetic tests and how her brain matures.
5- We are to have regular visits with dr f every 6 months and to get medication levels checked as well. Repeat MRI when she's 2-2 1/2 when it's more mature (more distinct black and white vs gray fuzz)
6- Good things- she's still developing at a normal pace, is curious, is learning new things, great memory, and interactive. She is a social butterfly!
Funny part- everyone swooned over her but she was mistaken for a boy about 50% of the time... Despite being in girl clothes with coral socks... Really people?!?! Oh well.
So basically we are on the right track and we will continue to avoid triggers, be vigilant with medication, and enjoy being seizure free!
It has been a great experience to come to Cleveland, meet some great doctors and see how another hospital runs, and how some things don't change between different hospitals. Overall, it was a successful trip. We've had a great experience spending some uninterrupted quality time with Audrey... She has learned so much while we've been here. The following are just a few-
- LOVES to color and is super coordinated!
- total girl :) she loves being told she's pretty! Ha ha and she loves to carry a purse ( aka the block bucket)
- has learned tons of new words, including some colors, and what the rooster says! Super funny! Ill take a video and post.
- loves to be naughty- saying 'no' only initiates a game for her. Apparently "not" is the word to get my point across that I'm serious. Then she repeats it back several times. :) she's too fun.
- Can make anyone's day. So friendly and says hello/goodbye, and blows kisses to just about everyone!
The bubble-top crib. She loved to play knock,knock with it.
