Lumbar puncture (she had to be hospitalized
during this stay Aug. 19.2011):
She already had LP testing done but because Dr.Joshi wanted to use it for other
genetic testing Aliyah former doctor didn't recommend, that batch of culture was
already degraded since it has been over a year.
The PET scan was done so we can see if we could LOCALIZE where her seizures start
so that that section can be removed if possible, but unfortunately Aliyah seizures are
to generalized nothing can be done. But Dr.Joshi did say that maybe just maybe we
can localize it because perhaps the seizures appear to start all at the same time but
in reality they may not be, a difference make in less than a nano second. That type
of technology is not available in Iowa, Dr. Joshi made a comment that maybe she
can refer us to go to Chicago to get it checked.
During that hospital stay they did a video EEG of Aliyah. Her IS was still there. This
is when Dr.Joshi recommended the increase of the diet to either 3.5 to 4.0 but to wait
for another couple of days just in case the ratio she is on kicks in. We received bad news
during our discussion over Aliyah's EEG. She told us that Aliyah would most likely not have
an IQ of 100 since she is over 2 years old and still with IS.
YES.... I WAS DEVASTATED.... WHAT PARENT WANTS TO HEAR THAT!!!!
SUMMARY OF ALIYAH'S SEIZURE LOG
WE HAD NO IDEA WHAT WE WERE GOING TO FACE!!!
WORK , WORK and MORE WORK!!! But we were okay with it as long as the ketogenic diet was going to make Aliyah seizure free....
AUG 1st-4th: The day we were discharged we didn't see any head drops, my assumption was because she was so tired and sleeping throughout the day....... But the next day we did see head drops :(
8/5 3 head drops
8/6 4 head drops
8/7 3 head drops
8/8 5 head drops
8/9 7 head drops
8/10 3 head drops
8/11 4 head drops
8/12 *2 head drops + evening seizure log lost
8/13 6 head drops
8/14 9 head drops
8/15 5 head drops
8/16 3 head drops
8/17 *7 head drops + lost count of seizure log
8/18 ** more than 8 head drops (difficult to catch because was admitted at the hospital too many doctors and nurses couldn't keep an eye on my baby's head drops)
8/19 ** more than 2 head drops (had an Lumbar puncture done was given glucose, it was necessary to have the procedure done)--- KETONES LOW
couldn't keep better count because of the 2.5 hr drive back home, then she slept rest of the day
8/20 * more than 11 head drops, too many evening seizure log
8/21 * more than 4 head drops, 16 eyes shifts (this I started to include eyes shifting to the side)
<<<< COMPLETELY OFF ACTH AND ON HYDROCORTISONE (HAVE A GAME-PLAN TO WEAN HER OFF OF THIS ONE)>>>>
8/22 2 head drops
8/23 3 head drops
8/24 4 head drops, 3 eyes shifts
8/25 1 head drops
8/26 N/A :)
8/27 14 head drops, 6 eye shifts (HUGE cluster of 18 seizures, and 2 individual)
<<<< Tweaked from 3.0:1 ratio to 3.25:1 ratio >>>>
8/28 6 head drops, 3 eye shifts
<<<< Tweaked from 3.25:1 ratio to 3.5:1 ratio >>>>
8/29 N/A :)
8/30 1 head drop, 1 eye shift
8/31 1 head drop, 5 eye shifts (also couldn't tell if she was having absence spells)
9/1 1 head drop, 2 eye shifts
9/2 3 head drop
9/3 1 eye shift
9/4 N/A :)
9/5 1 eye shift (maybe absence spells)
9/6 2 eye shifts
*** I THINK 3.5:1 ratio did the trick!!!!!!
I must note that corn puffs was given to my daughter by her therapist, she forgot
my daughter was on a strict diet. Aliyah suffered by having clusters of seizures....
The counts were lost, but the awful experience is still remembered...
This just made us more alert who was around her and to be strict more than ever
when it comes to her diet.
I must note that corn puffs was given to my daughter by her therapist, she forgot
my daughter was on a strict diet. Aliyah suffered by having clusters of seizures....
The counts were lost, but the awful experience is still remembered...
This just made us more alert who was around her and to be strict more than ever
when it comes to her diet.
