Today was our first trip to the neurologist's office in almost 5 months. In the week or so leading up to the appointment, Chris and I had both made passing comments to each other that we weren't too anxious about this upcoming appointment because we have just been so proud of Bexley and all her recent accomplishments.
However, this morning both of us woke up and admitted that we weren't
feeling quite so confident anymore. About a week ago, I stumbled across a
discussion board on Facebook for parents of children with IS. I have read a lot
about how social media is helping parents of children with rare disorders to
connect and was excited to have a new resource. Instead of turning into a
resource for us, this discussion board actually was just making both of us
worry more. I had read about kids developing atonic or head drop seizures. I
admitted to Chris I was now questioning whether Bex cocking her head to the side in her high
chair might actually be a new type of seizure. Chris had read about kids having
seizures in their sleep and was wondering if that was why she has been such a
restless sleeper for the last few months. Anyways, before leaving for the
appointment, we agreed on two things: a) we are quitting this discussion board
and b) we should ask the neurologist for further clarification about these types
of seizures instead of consulting Dr. Google.
Are we neurotic, worrywart parents?
Absolutely! However, we are both very aware that Bex is at an increased
likelihood to develop a new type of seizure in the future. It is important for
us to learn to walk the fine line between being knowledgeable about how to
distinguish seizures from normal behavior without letting worry about seizures
returning consume us. Prior to Bexley being diagnosed with IS, my knowledge of
seizures was pretty much limited to what you see on TV and in movies, which is
grand mal seizures that leave a person convulsing on the floor. In reality,
only a small minority of people actually experience grand mal seizures. There are many other types of seizures out there that can be much more subtle
to pick up (i.e., Infantile Spasms).
Anyways, I am getting sidetracked now and need to get back to the
appointment itself. Until we were sitting in that appointment, I kind of forgot
how much I hate these appointments. The appointments basically involve the
neurologist asking us a wide range of questions about Bex's development as well
as daily habits while he types on his computer. He doesn't really provide any
feedback or reaction to what you tell him.
This really starts to mess with your head and make you question whether
everything you are reporting is good or bad. There also always continues to be
the debate about whether there is an underlying cause for Bex's IS. Each
question he asks makes me start wondering if the information I am providing him
is helping bring him closer to figuring out a bigger picture diagnosis for
At the conclusion of the appointment, he did recommend a sleep deprived EEG
for her to determine if there is any possible epileptic activity causing her to
be a restless sleeper. That will be scheduled in the next few weeks. The
thought of her experiencing nocturnal seizures bums us out. One of the reasons that I am always so scared
of seizures returning is that I fear that new seizures will hinder her
development and wipe away all the progress we have made with her. The silver
lining is that if Bex is having nocturnal seizures, they are not interfering
with her development and can hopefully be managed with a little modification in
Honestly, with the fear of another diagnosis in the future and a possible
return of seizures, Chris and I both left the appointment pretty upset. The
negatives almost made us forget one pretty big positive. The
neurologist commented twice about how Bexley is very alert and attentive of her
social surroundings. He also made the comment that for an IS kid she is
actually doing really well developmentally. We have learned that
neurologists are pretty stingy with their positive feedback and comments, so
we'll count it as a victory in our book that Bex walked away with two!!
After appointments like today, our motto is always that we let ourselves
take the day to feel frustrated, worried, or upset. Then tomorrow we get back
to focusing on our sweet little Bexley and all the amazing things she continues
to accomplish despite all that she has been through.