We contacted Dr B's office right afterward with an email
and a call to his assistant the next morning learned she had his file
already on her desk. Although he had not been seen by Dr Bourgeois
in a year, we were asked if Samuel was ok and if I was ok, genuinely
concerned! Our local neuro who had seen him regularly all year
could not be reached for 3 days! I finally taped a note to her door
telling her of the seizure. When I did get a call back she was not
concerned stating “I knew he must be fine since he was with mother
and dad or you would have told me".....I asked for his chart and his
sister's chart that day. When I got them I found that her letters
to my daughter's pediatrician sounded like I was a normal mom. The
ones to my Son's in the same office were trying to make me sound like
a loon and as if this was Munchausen by proxy. She had also tried
to tell me, just a few weeks before that there was an EEG monitor
that had only a couple of leads, if a seizure hit you just hold it
up to the person's head. She likened this to a heart monitor???? This
doctor was a neuro?? She had been talking about this for months that
it existed. I could not find this in my research anywhere. She was
double billing us. Each phone call was a $35o bill as if it was an
office bill. She lied to me that the Munchausen’s was not from her
but another doctor, but my pediatrician told me it was from her. Fortunately,
he stopped this, and her writing this down, I found what she had been
doing.
In July
2005 Sam had a seizure in camp that was photographed and the droop
in his face was seen clearly. August of that year. After we had ruled
out Cardiac cause, Sleep apnea, and any other thing, Dr Bourgeois
agreed to a trial of Zonegran. It had been 3 years of no medication.
He has done so much better since being back
on medication. We had not realized how much depression Sam had
slipped into, however while off medication. Depression has remained
one of the scariest things we have faced.
In March we added
Keppra, though this was not the medication that we wanted, Dr B felt
it was best because of his learning disabilities. He soon gained seizure
control and we did see him go from just 2 in the first month to
a full 7 weeks seizure free.
Unfortunately, we had problems
with Generic Zonisamide because our Pharmacy was switching this on
us monthly and one version caused a 14 pound weight loss in just 2
months. We did not realize it was the Zonisamide at first and unfortunately
lost seizure control just as we realized the weight loss was going
on.
Fighting the pharmacy, losing seizure control, suicidal
thoughts, going up on Keppra to get control of the sudden seizures,
June of 2006 was a NIGHTMARE!!! We saw more seizures, including daytime
complex partials and many per week and it was just so scary!
Sam
went into a VEEG at the end of June and it was also so scary....we
left that with MORE uncertainty....Off Zonegran and with the video
not being kept where we were certain that Sam had a seizure.....
