Tuesday, July 30, 2013

Starting 3rd grade Epilepsy FREE!

When Miss Blue was about 4 years
old I noticed something was happening.
Every once in awhile she would  have starry spells.
(Meaning: talking than stopping in mid sentence
 and giving a empty stare for a few seconds.)
It started off almost not noticeable. 
Since I am her mom and spend every
hour of every day with her I noticed.
It went from happening once in awhile to everyday.
Then from once a day to multiple times a day.
The spells also got longer.
I said something to my husband about it
and he said it looked like she was just thinking.
I knew something was wrong though.
The last straw was when the one side of her face 
started dropping and she had a slight head rock going on.
After she came out of one of the starry spells,
I asked her where did she go?
She had no recollection just said everything was black.
It kept getting worse and worse,
we decided it was time to take her in.

Before I get into the whole story.
I am writing this for all the parents out there that may
be experiencing these symptoms in their children.
It is serious and they need to see a neurologist right away!
You can help it before it gets any worse.

I found a neurologist in our area 
and we took her in right away.
The first thing they had her do
was blow a pinwheel.
It caused one of the seizures to occur.
They watched her zone out and slowly rock.
They did EEG's and MRI's.
She was diagnosed with 
absence seizures also known as childhood epilepsy.

Which meant her brain had a intense surge of 
energy that was overwhelming her brain.
It is a condition that the 
 doctor said that this was very common
in children ages  4 - 8.
Also that it was more common in girls than boys.
My heart sunk though and all the 
grief and the guilt from the accident came back.
I asked if this could have been caused by 
head trauma, Miss Blue did have 3 skull
fractures due to the accident.
The doctor said no!
This childhood epilepsy was hereditary.
It was something she was born with not
anything that had happen to her caused it.

The first thing the doctor wanted to do 
was put her on medication.
Daddy didn't want to have any part of that.
Our first plan of action was putting 
Miss Blue on a gluten free diet and keeping
a daily food and seizure log.
It did decrease the absence seizures.
Which was good but she was still having them.
After talking it over a lot we decided 
to put her on medicine.
It was a really hard thing to do,
but the doctor said she would only need to be on
it for 2 years.
Also that is was good we caught 
it while she was young.
Her chances a being rid of the seizures 
all together with the medicine was high.

I searched all over the internet.
Reading all of the horror stories about the
side effects of the epilepsy medicines.
Hair falling out, depression, suicidal 5 year olds.
I was scared.
But it would be worse for her Epilepsie to get worse.
The doctor started her off with a low
dose of Ethosuximide aka Zarotin.

Then bumped it up a bit after a few doses.
Not one seizure since!
It was mixed emotions.
I knew we were doing it to help
her but what if it ended up causing more problems.
Honestly I found no good info online.
My husband had to tell me to stop
reading and looking up info on it.
Her only side effect was some 
mornings she would have a belly ache.
I would walk her into her class and let her
teacher know she wasn't feeling 100%.
I don't know if she was just lucky
and reacted really well to the medicine but she did.
No depression , hair falling out,
and most important no seizures.
After hitting her two year mark and 
being seizure free for two years.
We slowly weaned her off the medicine.
Lowering the dose each month, until
she was barely taking any.
She is really happy about this 
because she hated taking the medicine.

It has been a full month no medicine 
and still seizure free.
I am excited for her she is ready to 
rock third grade and does not have to worry
about missing school for doctors appointments and
starry spells!

I write this cause I know when I found out she 
had  Epilepsy I was depressed and scared.
I didn't make a big deal about it in front of her.
But behind closed doors I was crying my eyes out.
For the first few months I was severely depressed.
My message to you is it does get better.
This is something that you can not control 
only help to get better.
I can not promise that this medicine will 
work as good for your child as it did for Miss Blue.
But we are 100% happy we put her on it.
Since it has only been a month off the medicine,
I do watch her closely.
But so far so good.
And we can only hope it stays this way!
She is full of energy and ready to take on anything that 
comes her way, she is my superhero!

Another tip is make the going to the doctors fun.
I would let her blast her favorite song and sing 
as loud as she could on the drive. 
Snacks too make sure you have some goodies 
for them to snack on.
Miss Blue was never scared!
The trick is to stay positive no matter what.

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