We are in this fight together

Found this picture on Instagram.

I think it's a beautiful representation of the fight against epilepsy.

Did I mention tomorrow will be Arthur's 1year anniversary of NO seizures!!!

Still no EEG telling us otherwise,

so were taking the day!

Woo Hoo!!

A big Happy Mother's Day to every Mama out there!!!

Synapses

From the neuro film festival

It makes sense

Epilepsy facts by The Holden Foundation

Click on the title for some good seizure safety information

Just when you think all is ok.......

The "funny feeling"

has

returned

Once epilepsy entered our lives we realized

the "funny feeling" that

Arthur complained about for months leading up to

his first seizure

was in fact.....an aura

Once he started having complex partials and mentioned

the "feeling"

a seizure was coming

Well lets fast forward................to today

Arthur started to complain of it over a month ago.

But there was no seizures

Just the "feeling"

I tried not to worry, he had recently started  Strattera.

Maybe it was that?

I called the neuro and she wanted to try and decrease the Strattera

dose a tad.

Down to 60mg from 80mg. Give it at least a week

A week or so later.......

Arthur said his stomach wasn't as upset as before

But....

he kept getting the "funny feeling"

Great....

So I call the neurologist again.....

She says----

" It's sounds like his meds are working but barely hanging on, hence why

he is starting to get the 'funny feeling' again "

He will seizure free for 1 YEAR in May...... 1YEAR

and now

1 month before he hits that mark

IT

RETURNS?!?!

I am trying sooooooo hard to not let it worry me.

But my heart is hanging by a thread before it lives in my stomach

So the Doc increased his Zonsimide by 50mg.

Another pill

My poor kid

No kid should have this

Hopefully all he needed was a little medication increase.

But I'm worried the E beast will
never go away.
That the meds just keep it dormant
That he will never "outgrow" this

I LOVE good news!

Since we had complaints of chest pain.

I had to speak with the cardiologist

sooner then planned

He told me they were very impressed with the

results of his stress test and Holter.

Really?

After that, I was actually looking forward to the

appointment with the cardiologist

Arthur and our family deal with a lot

lots of appointments

lots of doctors

lots of medications

lots of worries

I can't even explain how nice it is to get good news.

We had the follow-up appointment with his

cardiologist,

Dr. Alkon

He told us he would have been happy with the results

if Arthur had a normal heart.

That children at this point, 13yrs post surgery, are not

usually doing this well.

He is amazed with how well his heart is functioning

Can you just imagine me jumping up and down?!

So Arthur has no restrictions, well besides contact sports.

The cardiologist said he actually needs more

daily exercise.

No problem DOC!!!

Who knows what the future will bring heart wise.

But as for today.......

We are very thankful

Thank you to Dr. Vaughn Starnes:

Your expertise in pediatric cardiac surgery saved our son's life

and continues to impress cardiologist's yearly

Thank you to the CTICU staff and everyone at

Childrens Hospital Los Angeles

We are forever indebted to you



Heart week....We need to Talk

As I posted previously February 7-14th is congenital heart disease awareness week.

Arthur was born with a heart defect.

So of course it's a big deal in our house

as is

Epilepsy awareness

The powers that be have made this one hell of a week.

The 7th brought:

the cardiac stress test and a 24hour Holter.

The 8th:

The second half of the Holter 

and

the horrid RASH

The 9th:

Chest pain

(the first time in years)

with neck and back pain

The 10th:

a reprieve

Now I bring you to the 11th:

As I am walking in to the cardiologist to return

the Holter monitor....

Arthur's school is calling

"Mrs.B, Arthur is in the office with chest pain."

Seriously? Again?

What the heck Heart Week??

After getting Arthur from school and speaking to the
cardiologist
We got an appointment with the pediatrician
it was that or a trip to the ER
Ummmm....No Thanks!

So they are thinking it is inflammation of the chest wall.
His Chest Xray was normal, his exam was
normal
So he gets Motrin every 8hrs and
if the pain doesn't improve?

Back to the Doctor we go

So Heart Week.....we are always huge supporters
But enough is enough

Next year....just send me a pamphlet

This is what a skin allergy looks like

Arthur is allergic to latex and alcohol.

He gets a horrible skin rash that lasts for almost two weeks

A few leads from the cardiac stress test and the tech accidentally

cleaning Arthur's skin with alcohol.=RASH

It was only a second before we realized what he was doing

and stopped him.

But it was too late.

When Doctors clean their stethoscopes with alcohol

they have to let it dry before they 

listen to Arthur.

Or this mean rash appears

We learned that the last time he was an inpatient for epilepsy testing

So the poor kid has this awful rash and it's really itchy.

He currently smells like Gold Bond...

But it relieves the itch, so what you gona do?