Neurology Update

We had our appointment yesterday with Tessa's neurologist and we learned some things...actually, it's probably all stuff we were told over 2 years ago when she was originally diagnosed...but hearing it again yesterday, was most helpful!

Basically, Tessa has Symptomatic Localization related Epilepsy.  The type of seizures she experiences are called Complex Partial.

Wikipedia defines a complex partial seizure as an: epileptic seizure that is associated with bilateral cerebral hemisphere involvement and causes impairment of awareness or responsiveness, i.e. alteration of consciousness.

I found the Wikipedia description of Presentation helpful (and complicated ;) as well:
Complex partial seizures are often preceded by a seizure aura.  The seizure aura is a simple partial seizure.  The aura may manifest itself as a feeling of deja vu, jamais vu, fear, euphoria or depersonalization.  The seizure aura might also occur as a visual disturbance, such as tunnel vision or a change in the size of objects (macropsia or micropsia).  Once consciousness is impaired, the person may display automatisms such lip smacking, chewing or swallowing.  There may also be loss of memory (amnesia) surrounding the seizure event.  The person may still be able to perform routine tasks such as walking.  Witnesses may not recognize that anything is wrong.
Complex partial seizures might arise from any lobe of the brain.  Complex partial seizures most commonly arise from the mesial temporal lobe, particularly the amygdala, hippocampus, and neocortical regions.  A common associated brain abnormality is mesial temporal sclerosis.  Mesial temporal sclerosis is a specific pattern of hippocampal neuronal loss accompanied by hippocampal gliosis and atrophy.  Complex partial seizures occur when excessive and synchronous electrical brain activity causes impaired awareness and responsiveness.  The abnormal electrical activity might spread to the rest of the brain and cause a secondary generalized tonic-clonic seizure.

So obviously, what we know, is that Tessa suffered a brain injury from the CMV viral infection in utero.  The calcium deposits on her brain from the virus caused scarring to the white matter and abnormalities to the grey matter.  When the EEG and MRI were done in August of 2010 at time of diagnosis, these abnormalities were detected.  Seizure activity was not detected at the time of the EEG, but the 'single spikes' on the reading of the EEG give a pretty good indication of the potential for seizure activity.  The general area of Tessa's brain where these abnormalities were detected is the top left side.  A repetitive 'spike' on an EEG reading would indicate seizure activity, but any 'single spike' is enough to return an abnormal EEG.  This is all good to know and great to hear again, because we realized there would be no reason to ever repeat an EEG...because with Tessa's known brain injury/brain damage, we know that the EEG would return abnormal results.

So, as far as the Gelastic seizures...we have a fairly simple, proactive plan.  One thing that Darin and I discussed, is that neither one of us have ever really 'checked' on Tessa during her 'laughing parties' in the middle of the night.  I mean really....if the girl is laughing, why disturb her?...especially when mom and dad could use some sleep!  To explain a bit more, Tessa still has lots of crying spells in the middle of the night.  We don't ever know exactly why or what is causing them, but we always go to her rescue.  Sometimes it just takes a few minutes to turn her night-light-sea-horse on, give her a pacifier, rub her back and hold her hand for awhile; other nights it's so intense it takes changing her entire environment: putting her in the living room with lights on, TV on, maybe giving her a bottle...anything we can do to try and help soothe her or distract her from what is ailing/upsetting her.  So, our new simplest plan of action, is to begin 'observing' or 'checking' on Tessa during the 'laughing party' times of the night.  Any time during the day/nap-time that we've checked on her, when she is just talking or laughing in her room, it always upsets her!  If she sees us and then we go away without spending time with her or holding her hand, her feelings get SO hurt!  So, we got accustomed to not bothering her in the middle of the night when she sounded to be just fine, so that hopefully she would eventually drift back off to sleep on her own.

So, what we will start doing now, is checking on Tessa and observing her state of consciousness during her 'laughing parties'.  If we turn on lights and are able to get her attention and be acknowledged by her, we can feel confident that she is not seizing.  However, if we find that she is in an altered state and not responsive to our presence, it will confirm that she very well could be dealing with seizure activity.  If we do in fact believe we observe the seizure activity in the middle of the night, we now have a plan.  There are a couple of different scenarios that would be our next steps of action.  The closest Intensive Epilepsy center is in Fort Worth, TX...basically we would be admitted there for about 5 days and they would hook Tessa up to an EEG and observe her and monitor the potential seizure activity and hope it could be detected by EEG during her stay.  This would provide her doctor with the information she would need to determine additional medication options, as well as, the potential damage the seizures could be causing to Tessa's brain.  The other alternative, which would be an excellent option for our family, is basically an in-home EEG.  There is a company that would come and deliver all of the equipment and get Tessa 'assembled' with all the EEG gear.  She would be monitored in our home by us for several days, and then the company would come back to collect the equipment and send the results from the EEG directly to Tessa's doctor.  Who knew something like this was available ~ talk about convenient!

So, long-story-short, we are obviously praying that Tessa's laughing parties are indeed just unusual joyous occasions for her, and nothing more.  The injury to Tessa's brain could be the very reason for both her crying and laughing spells in the middle of the night...there's just no way to know how the abnormal electrical activity that's going on up there could be affecting her at any given time.  I mean, it takes three 1 mg tablets of Melatonin to get this girl to fall asleep every night...I have a hard enough time shutting my brain down to go to sleep, I can't imagine what life would be like or how frustrating it could be with a brain injury.  We may have some sleepless nights in our future in order to get this necessary observation completed...but it's kinda hard to be too upset about it...best case scenario...Tessa invites us to join in on her joyful laughing parties and we can just celebrate and be thankful for that extra one-on-one time with her!  

Whew, I'm exhausted just writing about it all!  Gald to be more informed and confident about a fairly simple, proactive approach to a very complicated and mysterious realm for our Little Miss.  Anyone that has spent any kind of time with Tessa, knows she is a giggler!  Her giggles are a gift from the good Lord Himself, because they can brighten any day and bring joy to any situation.

~Whitney