This is a major update to Christian's regular medical
website (which is currently being redone).
 

It all started with an Ambulatory EEG on June 8 and 9, 2006.

We received a call from Dr. Morse, one of Christian's Neurologists at CHAD, who said
that he had a "text book" case of ESES.  He explained that...

Christian was seizing more then 85% of the time he was asleep.

His seizures started immediately upon closing his eyes to go to sleep.

The only predictable time he was not seizing was during REM sleep.

During sleep stages 3 and 4 he is seizing 100% of the time.

His seizures look like they are breaking up in stage 1 and 2.

Unfortunately these types of seizures are very difficult to treat with a very low
success rate.

In most (almost all) cases (Dr. Morse has one 19 year old with ESES) ESES
stops on it's own, in your mid-teens.  HELLO, Tin is 14 1/2.


  • Everything that we learn, from A-Z to peoples names to mathematics require
    sleep to be committed to permanent memory.  As we "learn" throughout the day
    the information is tucked away in temporary storage called "Place Cells" located
    in the frontal lobes of the brain.  When we sleep this information is moved to
    permanent storage in other parts of the brain.  

  • If we sleep poorly or not at all this information is partially lost or difficult to
    remember.

  • Since Christian is seizing almost all night long, that being the equivalent of him
    watching an intense movie all night long and then getting up and trying to
    function... he is not able to "tuck away" what he is learning, and thus....
    developmental delays or learning disabilities.
Counter

Of course, no one will or can say for sure because there are simply no guarantees.  
What can we hope for and expect is really very exciting.

  • ESES will stop.  All the literature we have read states that it will stop by his mid-
    teens.  Yes, Dr. Morse has a patient who is 19 years old but he/shee falls out of
    the normal scale.  There is a very good possibility that his ESES seizures will
    stop in the near future (next year or two, maybe sooner).

  • Knowing that learning is committed to permanent memory when sleeping, and
    this does not occur with Christian in his current state (or only in very rare
    instances) we can expect large academic gains in the future.  Not to say that
    he won't have to work hard -but then he is used to that.

What about speech and communication?

  • Referring to the "age 0-12 brain wiring scheme..." (mentioned above)  Dr. Morse
    believes that Christian's speech wiring is complete and usable (because he clearly
    uses and has it) and that it most likely is being blocked by ESES seizures.  This
    does not mean that he will speak with flowing sentences but his communication
    capabilities should vastly improve over the next few years and we don't
    know where and if there will be any limitations.  

What about seizures?

  • That's more difficult.  Christan likely has two separate seizure issues.  One
    underlying disorder and ESES.  We can not be certain of this as ESES can start
    as early as 2 months of age but we don't have any way to tell.  

  • Seeing as most of his seizures in the past few years have been sleep related
    (started during sleep) we can hope that all of those will go by the wayside.  The
    balance can hopefully be taken care of by his VNS (Vagal Nerve Stimulator).

            We are in the process of updating his medical website now.
                         Check back in the future for more details.
Normal EEG
3:59 pm in the car on the
way home just prior to falling
asleep.
 Click to Enlarge.
Falling Asleep EEG
4:00 pm in the car on the
way home.  Momentary blink  
before falling asleep Notice
spike in wave then equalize
then all spikes once asleep.
 
Click to Enlarge.
Asleep EEG
11:13 pm Asleep at home in
bed.  Look how peaceful he
sleeps  This is like a major
thunderstorm in his brain.
 
Click to Enlarge.