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Azaria has seizures everyday, some days the seizures are harder than
others. Most days she will have 2-3 small seizures, lasting 2-10
minutes. The harder seizures come once every week or every other week,
these seizures require an emergency medication called Diastat, (rectal
syringe of Valium). Generally this medication will stop the harder
seizures and Azaria will sleep for the rest of the day. We always keep
Diastat on hand, except this weekend we were out. I called in a refill
on Wednesday but the pharmacy could not fill it until late Friday.
Instead of picking it up on Friday I decided to pick it up Saturday
morning, unfortunately that was going to be too late.
Around 7:30 this morning (Saturday) Azaria began having a bad seizure, I
thought it might get worse so I ran out to the pharmacy to pick up the
Diastat, just in case we were going to need it. The pharmacy was closed,
not open til 9AM. I drove home hoping the seizure subsided and I could
go back and pick up the medication later. Not this time, Azaria had
gotten a little better, than a lot worse by the time I had gotten home.
TJ had given her a dose of Ativan, a medication that is supposed to help
stop the seizures but it has never been effective, we hoped it would
help a little. At about 8:30 Azaria's seizure started getting really bad
and TJ called 911. I was holding Azaria and her seizure got so bad, I
began to panic. Azaria was having a status seizure and I felt so
helpless. I thought we might lose her, I thought she was going to stop
breathing, I thought the ambulance would not get here in time, I thought
this was going to be the last time. I was so scared because she just
wouldn't stop seizing.
The firefighters responded first, some of them had been here before.
This time Azaria was in a full blown seizure. They administered oxygen,
an IV and gave her a dose of Versed, a medication I wish we had. Azaria
still kept going, then it looked like the seizure was slowing down. The
ambulance arrived and as they placed her on the stretcher, her chest
was popping up and down. It really scared me, I was shaking and thought
she was starting a different seizure now. TJ assured me she was ok, and
he rode in the ambulance with her. I put some shoes on Aidan and we
followed the fire truck to the ER. When we got there Azaria was out, she
was shaking and looked so tired and weak. I was still scared but felt a
little better now that the seizure had stopped. I don't usually feel a
sense of security at the hospital. It's not their fault that the doctors
don't know anything about Aicardi Syndrome, never even heard of it. So
its hard to feel safe when TJ and I know more about it than they do, and
they are asking us what we want them to do. Don't get me wrong, the
doctors are great here, I am glad they don't just do anything, but I
just want that sense of everything is going to be ok now that we are
here, the doctors will know what to do.
After what seemed like hours, Azaria began to come around and we were
discharged from the ER. We went straight to the pharmacy and picked up
the Diastat. About 4 hours later, we needed it. Azaria began having a
hard seizure again and we used one of the syringes. She is doing much
better now and seems to be happy, no more seizures. The rest of the
weekend we are closing the blinds, and we are just going to relax and do
nothing but enjoy our beautiful children. Nothing like a frightening
experience like this to remind us to slow down, relax and do nothing.
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