Marlee -WEED: The Story of Charlotte's Tangled Web

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 Marlee hugging Lulu her seizure response service dog. Lulu came from Canine Assistance in Alpharetta Georgia. Marlee was on a five year wait to receive a service dog. Saint Augustine, Florida. April 19, 2015

Marlee hugging Lulu her seizure response service dog. Lulu came from Canine Assistance in Alpharetta Georgia. Marlee was on a five year wait to receive a service dog. Saint Augustine, Florida. April 19, 2015


                  FIGHT THE GOOD FIGHT

                                         DO THE RIGHT THING

                                DAILY DOSE

  Cannabis oil on the left VS harmful pharmaceuticals on the right

Marlee receives cannabis oil twice a day. The white substance is coconut oil and the black substance that is the size of one rice grain is the cannabis oil.

I would like you to meet Marlee. Marlee recently turned 15 years old, she suffers from epilepsy and autism. Rather than telling you her story in an interview format, I think simply sharing with you what Michelle, Marlee's mother has written would be best.  Michelle shares with you Marlee's beginning to where she is today.

First I just want to tell you about my first encounter with Marlee.  Marlee can not speak much, but she does communicate through her actions. Within the first few moments I could tell she was a very sweet and happy little girl. Right away Marlee took me by the hand. That was a huge sign her mom had told me. She isn't apt to do that very often to strangers, so hearing that made the moment feel very special.

 Marlee greeting her dad Max after arrving home from a trip. Saint Augustine, FL. April 19, 201

Marlee greeting her dad Max after arrving home from a trip. Saint Augustine, FL. April 19, 201


Marlee was born, Marlena Alexis Vinzant on March 29, 2000. Here is Marlee's story in her mother's words:

"MV had her first seizure at the age of 7 mos.  Her second seizure happened one month later and lasted over 10 min.  She experienced temporary paralysis on one side of her body.  She was admitted to Nemours Children’s Hospital in Jacksonville, FL for evaluation.  There she was under the care of Dr. David Hammond.  He prescribed Phenobarbital.  Her seizures continued to increase and Clonazepam was added on 4/02/01.  She began experiencing several different seizure types. Generalized tonic-clonic, atonic, and absence.  At the point that hundreds of atonic seizure were occurring daily, Sept 2001, a second opinion was requested.  She was spiraling out of control.  Dr. Daria Marrinzini admitted her to Nemours for additional evaluation.  This began the road to searching for answers.  She was admitted to the Cleveland Clinic in Ohio, under the care of Dr. Elaine Wiley, to see if she was eligible for brain surgery Nov. 2001.  She is not eligible due to her seizures being generalized.  From there MV was admitted to St. Joe’s Children’s Hospital in Tampa, FL, under the care of Dr. Jose Ferreira, for the purpose of beginning the Ketogenic Diet.  After the introduction of the diet there was significant reduction in seizure activity.  However, after 3 ½ years on the diet it became ineffective.    She was then referred to Dr. Juan Ochoa, UF Jax, by Dr. Ferreira.  He felt that a local neurologist was a better for managing her care.  Dr. Ochoa is currently published for his research and success with Ceralyte electrolyte therapy controlling absence seizures.  MV  drank 1 liter a day and it controlled her absence seizures for a period of approx 2 years.  The electrolyte therapy was discontinued Aug 2009 due to the initiation of the ketogenic diet, again.  The bag of tricks at this point was very limited.  We and the doctors had tried EVERYTHING to get some sort of control.   She is currently still experiencing generalized tonic-clonic seizures, (approx.5-6 a week).  The Vagus Nerve Stimulator was implanted in Oct. of 2007.  This has not reduced the frequency of her seizures.  However, the magnet is beneficial in reducing the length of her seizures.  She currently is under the primary care of Dr. Paul Carney at UF Gainesville.  He suggested we get her screened for autism.  She was diagnosed Aug. 1, 2008 with autism spectrum disorder.  She is currently labeled Other Health Impaired, Language Impaired, OT, PT and speech impaired and Intellectually disabled.  We have applied for Social Security Disability two times and been denied.  We have applied for several different grants to help absorb medical costs and been denied.  In May of 2010 we organized a fundraiser to cover the cost of placental stem cell treatment in Mexico and we far exceeded our goal.  We traveled to Mexico and under the care of Dr. Omar Gonzales, Marlena had placental stem cell treatment.  She had six injections in her head and four implants in her back.  We also have paired the stem cell treatment with Hyperbaric oxygen therapy.  We unfortunately found no positive gain as a result of the treatment..  The long road continues…We have concluded our hyperbaric therapy….no results …..not our deal.  Marlee was admitted to Miami Children’s Hospital from Oct 11 – 15th, 2010, to have more tests.  Nothing new.… It’s the med game….  We have been researching MMJ for years and have currently began CBD, Jan 2015.  We are hoping that this will be our miracle!"


Dec 2000                     Nemours Children’s Hospital Jacksonville, FL – 1st treatment 

Sept 2001                    Nemours Children’s -  video EEG, CAT, MRI, PET

Nov 2001                    Cleveland Clinic, Cleveland, OH - Video monitoring

Feb 2002                     St Joseph’s Children’s Hospital, Tampa, FL - Keto diet

Feb 2004                     St Joseph’s Children’s Hospital – video EEG

March 2005                 Cleveland Clinic – video monitoring

Dec 7th & 8th 2005       Ambulatory EEG UF Jax

Oct 2007                     UF Shands Jacksonville- VNS implanted

March 2008                 UF Shands Gainesville – EEG video monitoring

Jan  2009                     UF Shands Gainesville -  Sleep Study

July 2009                     UF Shands Gainesville – 24hr video EEG monitoring  baseline

Aug 2009                    UF Shands Gainesville – Administration of Ketogenic Diet

Nov 2009                    UF Shands Gainesville – 5 hr EEG

Oct 2010                     Miami Children’s Hospital EEG monitoring, CAT and PET scan

July 2014                     UF Pediatric ER 2 hour long seizure

Jan 2015                      Ambulance to Flagler ER Status

Feb 2015         Status  Flagler hospital- ambulance transport to UF Shands admitted to PICU..Three night stay

As well as numerous ER visits.

Ketogenic Diet           Jan 2002 – Sept 2005


Jan 2002                      3.5/1                July 28, 05       2.75/1             

July 2003                     4/1                   Aug 6, 05        2.5/1

April 04                       3/1                   Aug 22, 05      2.25/1

Feb 05                         3.5/1                Sept 8, 2005    Stopped diet

June 17, 05                  3.25/1

Began Diet again…..  Gainesville

Aug 3, 2009 – Feb 3rd, 2010  not at all effective…no reduction in seizures.

Longest Seizures

April 23, 2003             27 min                         June 23, 2009, cluster 11 seizures over 48hr.

July 7, 2003                 7 min                           Oct 23, 2009  15 min

Aug 12, 2003              23 min.                        Nov 5, 2009 8 min

April 12, 2008             10 min.                        Nov 9, 2009 10 min

June 14, 2010 6 seizures                                 Nov. 26, 2009  7 min.

June 30, 2010 3 seizures                                 many more….too many to list

Diastat administered

11/28/12….stopped updating, too many to list

Jan 19th, 2015              30 min Status   hospital

Feb 7, 2015                 5 seizures status  hospital

Alternative Treatments

Cranio Sacral                           March 2006 – Nov 2006

Reflexology                            Jan 2007-Sept 2007

Ketogentic Diet                      Jan 2002 – Sept 2005, Aug 2009 – Feb 2010

Electrolyte Therapy                 Oct 2005 – Aug 2009

Neuro-optic Analysis              May 2005

Faith Healer                            March 2005, June 2005

Vagus Nerve Stimulator         Oct 2007

Reflexology/Reikki                 6 mo. 2009

Stem Cell Treatment               May 31st , 2010

Dr. Omar Gonzalaz… Placental stem cells; 6 injections in head and 4 implants in back.

Hyperbaric Oxygen Therapy   May 24th, 2010 – July 4th 2010

Acupuncture Sept 2010 –Feb 2010  - (once a week)

CBD                                        2014/2015

Frankencense                          drop under nose and on feet during seiaure


MRI                – normal         Gainesville, March 2008

PET                 Nov 01            ,           no significant abnormality

PET                 Oct 10             Miami Children’s Hospital

CAT                Oct 10             Miami Children’s hospital

Spinal Tap        March 2006    Normal Glucose, rules out glucose transport def.

Neuropsychological Report    UF Gainesville, March 2008

MEG scan       April 2008       University of Alabama – Birmingham not eligible for brain


Autism Screening                    UF Gainesville, Dr. Carlos Rodriquez –

                                                Diagnosis – Autism disorder Aug. 1, 2008

Sleep Study     Jan 2009          UF Gainesville – results mild sleep apnea,  referred to ENT

Pertinent History

Birth History:  Pregnancy normal. 32 lbs. gained.  Natural birth, very quick, 1 hour 44 min from first contraction to birth.  Induced at 10 days past due date due to fluxuation of baby’s heartbeat.  The cord was around MV’s neck when she was born.  Blue and floppy.  1 min APGAR- 4,  5 min APGAR – 9.  Oxygen was administered.  Birth weight 7lb. 13oz.,  21 ½ length.  MV was breast fed exclusively for first 5 mo.  Solids were introduced.  Breast feeding continued until 13 mo.

Developmental History

Normal until onset of seizures (7 mo.) two weeks after vaccinations.   Developmental progression has been abnormal since.  Speech is impaired. 17 mo. 1st word – Da for DaDa, 23 mo. Said MaMa.  12 mo. !st step, 21 months walking independently.  Has been in OT, PT, and ST since 14 mo.  MV  attended Otis Mason Elementary where her father is a teacher until the age of 8, 2nd grade.  She is now attending a full time specialized class at Gamble Rogers Middle.  She currently needs one on one assistance with her academics.  She has an extensive IEP and is labeled other health impaired Language Impaired, OT, PT and speech impaired and Intellectually disabled.

Past Medical History and Epilepsy Risk Factors

There is no history of significant head trauma, central nervous system infections or febrile seizures.

Family History:  Marlene lives with both her parents and has no siblings.  She loves to feed and her dog named Oakley Onions and in Jan of 2013 she received Lulu her seizure response service dog through Canine Assistance of Alpharetta, GA.   There is no family history of epilepsy or other chronic neurological conditions.  Mother is adopted.

Medications Tried                 Max Dose                   Doc                 Date      

Carbatrol (Carbamazepine)     100mg 3xday              Hammond       05/01

Lamictal                                                                      Carney

Depakote                                 375 BID         

Mysoline                                                                     Hammond       06/01

Diastat                                     15 mg                          current

Penobarbitol                            15mg                           Hammond       12/00

Gabatril                                   short lived                  


Keppra                                    250BID                       Ferreira            04/04                          

Topamax                                 15mg-BAD shakes      Marranzini       09/01

Klonapin                                 .5 3xdaily                    Hammond       04/01  

Trileptal                                   225mg/300mg             Ferreira            12/04-07/06

Zonegran                                 200mg                         Ochoa              03/06-12/06    

Banzel                                     800mg                         Carney             2015

                                                (restless sleep)

Vimpat                                                150mg                         Carney             2014

Onfi     (tremulous)                  25mg per day              Carney             10/09/12

Vimpat 200mg            AM

              200mg           PM

Banzel 600mg             BID

Clonazepam 1mg        BID

CBD                            1 grain of rice size in coconut oil BID