This is the list of medication Jackson is
currently taking:
x
x
- CBD 20:1
- Diamox
Progress with C B D T reatment:
In November 2012, Jaxs cocktail began to
include a trial of CBD rich butter. His
dosing has increased and he is beginning to
show signs of cognitive improvements,
lessened seizure intensity and quicker
recovery from seizure events. His VEEG
background is now showing normal without
slowing or spike waves.
He has completely weaned from
Phenobarbital (highly addictive barbiturate)
Clonopin (highly addictive benzodiazepine)
and Onfi (highly addictive benzodiazepine)
Stiripentol, and a decrease in Depakote by
50%. Jaxs is also no longer on the
ketogenic diet with 5 additional nutritional
supplements.
Despite all of the medications and other
limitations, Jackson has the ability to wake
up every morning with a smile and a warm
greeting: "Good Morning Mom!". I am
blessed with this greeting even on the
mornings when he has seizures before
waking up; sometimes he has 10+ seizures
between 2 am and 6 am and still wakes with
a smile and willingness to tackle the day.
He is the inspiration and sunshine which
empowers me to continue each day to fight
for his needs, inspires me to request access
to appropriate medical care and hope for the
future for him to live the happiest and best
life possible.
Medications and/or treatments tried
before M M J:
Phenobarbital, Clonopin, Tranxene, Onfi,
Versed, Diostate, Valium, Lorazepam,
Tegretol, Depakote, L-Carnitine, Topomax,
Keppra, Keto Diet with many nutritional
supplements, Zonegram, Zaratin, Felbatol,
Ritalin, Lamictal, Diamox, Vitamin B6,
Prednisone, Clonidine, Gabapentin, Banzel,
Stiripentol, Prozac.
Surgical Interventions:
VNS, Right Frontal Lobectomy,
2/3 anterior corpus Callosotomy.
O ngoing Needs at T his T ime:
Jackson needs safe access to the state
approved medical cannabis with high CBD
and low THC to control his seizures in both
states in which he resides.
At this time Jackson has been approved for
nursing services with EPSDT/Medicaid to
keep him safe while awake and asleep
because of the risk of increased risk of
injury resulting from seizures or SUDEP.
The same insurance company is currently
paying for the stiripentol (FDA Orphan
Drug) with a prior authorization through the
EPSDT/Medicaid program for
compassionate use.
The approval of the stiripentol will decrease
the cost of Jackson's care with less FDA
approved medication which are ineffective
in controlling the seizures, decrease in
frequency of emergency room visits, less
med-flights to level 4 epilepsy centres, and
avoidance of lengthy hospitalisations from
intractable seizures. The nursing services
decrease the cost of emergency rooms visits
and hospital admissions. Both the nursing
services and the medication improve
Jackson's quality of life, allow his older
sister to be a normal-typical teenager, and
should provide the opportunity for mom to
continue with her nursing education and
ability to earn a living as a RN to support
the family.
Currently Jackson receives nursing care
including the administration of the
Stiripentol and other FDA approved
medications through Loving Care Agency.
Atlantic Private Care is unable to
administer the medically necessary, doctor
ordered stiripentol without IRB interference
and politics.