seizures

I'm not sure how much of this i have shared here.
I know that i have posted this journey on her carepage site.
Grace began having "episodes" last December.
We concluded these were seizures...the week we returned from vacation.
*i'm telling you, when it rains it pours!*
They have been sporadic.
A 1 in December...a couple in January...nothing until June...and another yesterday.
They have looked slightly different each time.
Only slightly...until yesterday.
It was scary...I wasn't with her...the people with her didn't know how to respond.
We ended up in the ER...it reminded me how i much i dislike that environment.
Seeing her poked on and the flurry of activity that took place when we entered carrying our limp girl and i mentioned "my daughter has a seizure disorder". For my heart moms...it's VERY similar to my "my child has CHD" and you arrive in the ER. ;0)
We have been on seizure meds for 7 weeks...meeting the predicted therapeutic dose last week.
I'm sure that played into the shock of it all...and her recovery time was lengthened.
Noah was present and the first responder...which was also pulling on my heart, as he was scared.

She is fine...even just hours later, she is "fine".
Yet the wake of aftermath on the family around her who witness it is indescribable.
I came right home and decided that I needed more knowledge.
Like her heart...i need to understand *better* what is going on in her little brain, which makes such an impact on her delicate looking body.
Yesterday was...rough.
Today, I feel renewed. :0)

A few things you may be curious about. *ie: things I would be wondering ;0)*
*i don't wonder every moment of every day, if she is going to have one
*seizures look very different depending on the area of "activity" involved
*even with the same types of seizures...people don't necessarily present the same way
*there are "phases" the actual event of seizing...and then the recovery or "postictal" state
*Grace's actual seizures are short at this time, the postictal/recovery time is long and difficult to watch

Most of us know that Seizure activity is due to electrical activity in the brain...misfiring.
Depending on the area of the brain involved...and the amount of activity that took place, can determine if and how long the postictal phase will last.
Some people can have a seizure and not require a "recovery" period.
I have a friend who's daughter only sometimes has the postictal part.
She just never knows.
Grace has always had it afterward.
I will share what that looks like for Grace and then explain what is actually taking place in her body.
Grace's seizures last approx 30-60 seconds. *i assure you, a lifetime when you are watching*
Grace has always experienced the postictal state.
The "scary" parts have usually lasted 15-30 minutes.
Yesterday it was a full hour.
What this looks like for Grace is:
dilated pupils, complete color loss *not an ounce of pink*, blank/confused stare *at times looking terrified*, either unable to speak or slurred attempts, cold to the touch but clammy, unable to sit or hold her head up. yesterday she mixed it up a bit by being rigid initially and displaying what I can only describe as a "moro reflex", like a newborn baby has, but within 30 mintues...she went limp, which is what she usually does. Typically *for Grace* this will end with, vomiting...eyes become reactive, and the color returns...she will then "sleep it off" for a good 5-6 hours and wake up "normal".
What is taking place in her brain:
Postictal just means "after seizure". The brain in all it's wonder, is recovering from the trauma it has just experienced. Theoretically, if it took place in motor, speech, whatever...that would be the area impacted during the "recovery" time. It essentially shuts down to recover for a period. This period can last minutes, hours, even until the next day...in various degrees. Example: Grace was unable to walk for a long time yesterday...considering the changes we saw in her tone this time...that is logical.

Some people have 'triggers' or things that they know make them more susceptible to seizing.
We are watching closely for those.
We have noted that 4 times now, she has been watching a movie.
She woke up sick today.
The seizure in June came 3 days into illness.
I know that we are fortunate to have such gaps between them.
I'm beyond grateful.
Witnessing it once...is more than enough.
As i sat and watched them hook up all of the probes in the ER...all over her scarred little chest and belly, she just has had a heavy load to carry. I'm definitely still honored to carry it with her...it's just not easy.