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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
MAKING PICTURES MATTER
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 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!"
Hospitalizations
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
Ratios
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
Testing
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
surgery.
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
Tegretol
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