Christian has been through a lot and this was just
one more procedure that we were "doing to him".
We were a bit apprehensive going in only because
it was again putting chemicals in his body and
while setting up the EEG is completely painless he
is scared of it and it usually requires us restraining
him for an hour or more while he screams through
Utilizing FC (Facilitated Communication) we typed
with Christian and tried to reassure him that it
would not be harmful or painful. He was excited
that maybe it would make a difference.
|Mom tries to reassure Tin.
Arrival and Setup
We arrived at 1:00 pm,
checked in and were in
our room "checking it
out" by 1:30. John, our
nurse, went through
|By 2:20 the EEG team,
Mary and Chris, arrived.
Mary measures Tin's head
for placement of each of the
John helps Mary and Chris
while Justin tries to distract
Justin came along for moral support!
A conductive gel is injected into
each of 24 electrodes while they
are glued to Christian's head.
Setup takes 30 - 60 minutes.
Today we finished in 35 minutes.
That was awesome and Mary did
a fabulous job. It did not hurt
that she was a hockey goalie.
A control pack for the EEG is
fitted to him. Wendy assures
him it won't hurt.
All wired up and no place to go!
"I did it!!"
"you play hockey"
Kristen from Pain Free heard Tin was
around and came in to shoot a few
pucks. She and Christian are pretty
Grandpa "He shoots, He scores!"
Justin found some portable Nitnedo64
Let 'er rip!
Setup went really well today. After a number of Residents (DHMC is a teaching facility) came in and got patient histories we
explained that Christian was beat and would be needing a nap. He naps almost every afternoon. In lieu of the fact that
Christian did not receive his afternoon medications because they had been sent down to Pharmacy for examination we
made the announcement that Christan was falling asleep and if anyone needed to see a seizure he would be having one int
he next 20 minutes.
99% Tin's seizures are within the first 20 minutes of his afternoon nap. At 9 minutes into his nap i went out to the nurses
station and again said he would be having on in the next 11 minutes. Within 2 minutes one started. It lasted about 3
minutes, we swiped his VNS (Vagal Nerve Stimulator) 3 times. He moaned and groaned a few times and said it was all done
--he then fell back asleep.
He was only getting the experimental dose of Valium at night so this would be a good test to see where or if the EEG
changed from a month a go.
If any reader is familiar with seizures,
they will understand how bad this
looks. This is ESES -seizing 85%+ of
the time you Sleep. Notice the "key" at
the bottom of the screen -also to the
To explain this in layman's terms (very oversimplified!):
Spike Detections = The computer is setup to "detect" any brain activity causing a spike larger then "normal" These
can be caused by muscle movements, deep breathing, coughing... and of course true seizure spikes. These spikes are
momentary electrical interferences in the brain. In Christian's case here he had 3,515 in the first 45 minutes of his nap
-breaking that down to 1.3 spikes every second!
Spike Events = a sustained spike/wave pattern that lasts more then 5 seconds. These are true Spike Wave Stupor
seizures (tucked away in all those individual spikes mentioned above. He had 230 of these in those 45 minutes or one
every 12 seconds (that is the average).
Seizure Detections = Identifiable Spikes related to seizures (going beyond the Spike Wave Stupor type of seizure) but
not grouped into a specific "event". Call them mini-seizures or petite Mal. 340 in the first 45 minutes or one every 8
Seizure Events = sustained seizure activity over 5 seconds -These would be significant seizure events. 11 in the first
45 minutes or one every 4 minutes.
|Is it any wonder Christian says he's tired all the time!
| Let the Trial Begin....Timeline:
He got his meds at 9:00 pm. We had been told that it could go one way or another. Hyper is on one end and out cold is
on the other. He was kind of in the middle.
Based on the fact that he has tolerated 15 mg of Diastat to stop a Tonic Clonic (Grand Mal) seizure we decided to try
15 mg instead of the mainstay (for Dartmouth) of 10-12.5 mg.
10:55 pm He finally fell asleep at .
11:05 I checked the monitors and they still looked good;
11:11 alarm went off. He was in full blown ESES.
11:20 Still Spike Wave
12:20 am EEG was normal with an occasional spike
12:54 Spike Wave ESES started back up.
01:38 EEG was normal with an occasional spike
02:35 Administer Carnitine and Zantec while sleeping
02:40 EEG was normal with an occasional spike
03:20 Spike Wave ESES started back up
03:34 Spike Wave ESES started back up - checked seizure events...16. That's just 2 in 4.5
hours compared to 14 in 2 hours when he napped and was not on Valium.
04:44 EEG was normal with an occasional spike, going to try and get a few hours sleep.
06:30 Turned over -I readjusted his wires. He said good morning but went back to sleep.
07:55 Woke up. Very happy and not "drugged".
|23:56 (11:56 pm) ESES
14,898 Spikes (7,000 from his nap)
15 Seizure Events (14 from his nap)
|00:36 (12:36 am) Normal
15 Seizure Events
16 Seizure Events
In his 2 hour (Non-Valium) nap he had 14 significant seizure events with 7,100 spikes.
In his 9 hour (Valium) night he had 4 significant seizure events but still accrued 25,000+spikes.
It does not take a rocket scientist to see that there was a reduction in electrical activity while Valium was on board. This
is why we are moving forward and trying 15 mg Diazapam (Valium) for the next 30 days.
We gave him 10 mg on Friday and Saturday and bumped him to 12.5 today and will proceed with that tomorrow. On
Tuesday we will move to 15mg.
Side Effects so far: His walking has gotten worse over the past 3 months -as he grows taller his toe walking is impeding
his gait. He was unsteady on his feet before this. Now he is very tipsy and needs assistance to walk up and down
stairs and over any obstacles. He is very "snappy" and quick to talk back but is turned around relatively quickly. He is
happy and his eyes are very clear and there is a noticeable increase in his speech. This is day 3.
|The Neurologist did say that it is not definitive whether the Valium made a difference. Comparing the
ambulatory EEG from a month ago to this one he said there are clear indications that Christian's seizure
pattern is breaking up and that the changes may be due to that. We seem to be on a new road -where this
one will lead we can only dream of. We have been let down before so we are optimistic but cautiously. It
is really nice to get positive news for a change.
Video EEG - Dartmouth Hitchcock Medical Center
Children's Hospital at Dartmouth - CHAD, Hanover, NH
Updated: July 17,2005