has never been a quiet child in almost 11 years. She has always been
very active and talkative. Earlier this year I started noticing times
when she would be talking and she would go quiet and it was like
watching her disappear. She would just stare into space and not speak or
blink. You could snap your fingers or call her name and nothing .
Something inside told me she was having seizures. People would say 'oh
its ADD'. As her mom (and someone with ADD) I knew
it wasn’t that.
June we were in the mall one night and Audrey had a seizure I decided
at that moment to find a neurologist. I found Dr Patel in Pasadena and
called them first thing
Monday morning. Her office was so great and got us in that week. By that
Sunday we were getting ready for Audrey's first sleep deprived EEG. We
woke up at 4:30 am the next day for her first test. I remember thinking
'I can’t believe we are having to do this.'
Audrey was so nervous it was making her stomach hurt. We get to the
office and they started explaining what they were going to do and how
they will put lead wires all over her head. Audrey was starting to
relax, taking pictures and trying to have fun with the
process. They got her settled and then they give her a pinwheel to blow
on. By her third blow her eyes rolled back into her head and her body
got super stiff. It was like nothing I have ever seen. It was so hard to
watch her go through that . I have only seen
the absent seizures so this was new for me. They proceeded with the
strobe light after and then had her sleep for 20 min. Sitting next to
her in the dark while she slept I cried. I was in shock we were there.
How could this was happening to my baby. I NEVER
could have guessed just a few months ago we would be here.
days later we got the official diagnosis. Audrey has Epilepsy with
Absent seizures. The doctor showed us a picture of what Audrey’s EEG
looked like and sat us down
to explain to us what Audrey could do and could not do without one on
one adult supervision. The whole time she went through everything I kept
thinking 'this can’t be happening.' I mean once you get passed SIDS
when they are infants I thought we would be golden.
Instead I am here having a doctor tell me my daughter may have seizures
with convulsions. Explaining to me how her lips will turn blue and I
just kept telling myself 'don’t cry, don’t cry in front of Audrey.'
days later we started on her meds and that has been a real challenge.
By the third day she was getting sick and laying in bed. She was
depressed and felt like she
was being punished. One night as she went to take her meds she asked me
if she was going to die. There is NOTHING in life that will prepare you
to hear your child ask that and be so afraid. No words seemed to make
her feel better.
got her meds balanced out and she started to feel better. Meds are a
daily battle. They need to me adjusted up or down depending seizure
activity. It seems once
you think your settled on a dose she has a seizure and we're changing
day as we were driving and Audrey started goggling Epilepsy. She told
me they had a walk to raise money for Epilepsy and asked me if we could
do it. She texted her
family and friends and asked them all to join. Her step mom set up the
team page and off she was. Audrey has an excitement and energy I haven’t
seen since she was diagnosed. She put it on social media and started
walking around talking about it and asking people
to support her. This walk has given her a forum to not only raise money
to help but a place she can place good energy in and tell people about
her diagnosis and not feel ashamed or embarrassed . It has been great to
see her like her old self. She still has
days when she is tired and down, but we have much less of those days and
more happy days now . We are still in the EEG and blood tests phase of
this journey. We are more hopeful and making the best of it. I tell
Audrey we have to have faith God knows where
he is taking us.