Friday, February 10, 2012

Another day, another doctor’s appointment

Allie got to see an epileptologist at the Children’s Hospital today.

First off, I want to (once again) say how amazing the Children’s
Hospital has been to us. I noticed a modified spasm on Wednesday
where her jerk was only on the right side. I caught a video of it and
emailed it to Allie’s primary neurologist after business hours on
Wednesday. The neurologist emailed me back at 10pm saying that we
might want to add a new drug (called Trileptal) to Allie’s current
cocktail and see if it helps. We emailed back some questions about
the drug and its possible side effects. She called me on Thursday
morning to go over my questions, talk about our plan, call in the
prescription to our pharmacy, and set Allie up with another
neurologist who specializes in pediatric epilepsy (hence the name
epileptologist). The epileptologist didn’t have any openings until
April so they made us an appointment with the physician’s assistant
and promised us that the doctor would crash our appointment and we
would get an “unofficial” appointment with the doctor. How amazing is

Anyway, the epileptologist was great and was able to give us a much
better idea of what Allie’s seizures are and what they mean for her.
She said that the neurology/epilepsy team consisting of about 8-10 MDs
and their assistants met the other week to discuss Allie. We had
known that this meeting happened but we had only heard that the
consensus was to treat for infantile spasms using ACTH. Apparently
there was some discussion about whether to term Allie’s condition
“Infantile Spasms”, but the decision was that she probably has IS but
that it doesn’t really matter what we call it. Allie’s seizures look
like spasms but they also look like they are transforming into other
types of seizures. Her EEG shows some “complex partial” seizure
activity, her jerks look to be “myoclonic”, she is having some “tonic”
seizures that were caught on the video 23-hour EEG, and this new
right-side-only seizure looks to be a “simple partial” seizure. I had
no idea that so many types of seizures existed but, just like
everything else, Allie continues to surprise me.

Right now, Allie is taking ACTH for the IS, Topamax as a
broad-spectrum drug to combat the multiple seizure types, and Trileptal
for the simple and complex partial seizures.

The epileptologist also went into a little detail about Allie’s long
term prognosis. We had read all about IS and how most kids end up
with mental retardation. This is our biggest fear. The doctor
explained that much of the retardation comes from the underlying
condition that is also causing the IS, and it is not necessarily the
IS that is causing the retardation. In Allie’s case, her IS/seizures
are caused by the stroke damage and therefore she will most-likely not
fall victim to the mental retardation. Her prognosis with the
seizures is virtually the same as with the stroke, just with seizures.
She explained it as seizures can interfere with a train of thought,
which can inhibit learning, but the seizure does not interfere with
the brain’s ability to learn. Specifically, the seizures are not
causing brain damage but they may stop the brain from functioning

The goal is to get the seizures under control as soon as possible,
hopefully through medication. We are going to try to the different
medications and see what works for Allie.

There is an alternative approach if the medication fails and that is
surgery. The thought of brain surgery is so far from appealing that I
don’t think I can really accept that possibility right now. I love
her brain! I want to keep it all there! But, if the medications don’t
work and she starts to show cognitive decline, I think this is an
option that we may have to consider. Let’s cross that bridge if it

The doctor signed off on Allie’s continued therapy, which means that
she will be back to the grind once her immune system has recovered
even if her seizures persist.

In other news, Allie’s 1st birthday is tomorrow! Can you believe it?
I just realized that Jonathan and I didn’t get her anything. We
didn’t get her anything for Christmas either. What strange parents we
are. Many of her family members are coming to wish her a happy
birthday in person. She is a lucky girl.

Lastly, today was a seizure free day. Let's hope for more of these!

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