Jenelle is 5 years old. We believe she started having seizures at age 10 months, or sooner.
What is Jenelle's diagnosis?
Jenelle's condition is undiagnosed. She has uncontrolled seizures that present in the form of Lennox Gastaut Syndrome (meaning multiple types of hard to control seizures). The cause of her seizures is unknown, but we believe she may have suffered some form of brain damage during development in utero. Because of her seizing brain, Jenelle has cortical visual impairment (is legally blind), has low muscle tone, is mentally retarded (functioning at the mentality of a 18month to 2 year old child) and is fed by G-tube for failure to thrive.
What is Jenelle's prognosis? Jenelle is medically fragile. When she was first diagnosed with seizures, our doctors told us that if we could not control her seizures, she would most likely not live past age 5. Obviously, we now have seizure control, and she is doing very well. Because she is undiagnosed, her prognosis is also unknown. We have been told that she will probably have a short life because she is so medically fragile.
Is Jenelle Seizure Free? No. We say that Jenelle has "seizure control", but that in no way means that she is seizure free. Jenelle has a few seizures a week, depending on her health. We see this as "seizure control" compared to the time when Jenelle first started having seizures (age 10 months) when she was having hundreds of seizures a day.
What do her seizures look like?
With Lennox Gastaut Syndrome, a child will have all types of seizures; grand mal, petite mal (absence/staring seizures), complex partial, myocloinc and atonic. Jenelle's most difficult to control seizures have been the absence seizures.
Jenelle receives services from Regional Center and through our school district and the Orange County Department of Education. She attends a special needs school where she receives various therapies, 6 hours a day, that include Physical Therapy, Occupational Therapy, Speech Therapy and various inclusion type therapies with typical kids.
What equipment does Jenelle have?
Jenelle has two wheelchairs; one for bus transport and the other that is used as a stroller on weekends. She wears AFOs to help her walk, and can use a walker/stander at school. We use a Lecky Bath Seat during bath time, and I am still using our Peg Prego high chair for feeding. I keep it lowered to the floor so she doesn't tip.
What medications is Jenelle taking?
Jenelle is currently taking Felbatol (for seizures) and Risperdol (for behavior.) She is also fed by G-tube and takes Pedisure Forumla with Fiber, and eats food by mouth as tolerated.
What medications/treatments has Jenelle tried?
I strongly recommend the http://www.kidsepilepsy.com/ website. It is a database of medical treatments used for kids with epilepsy, including feedback on side effects, effectiveness and diagnosis. Below is a list of medications tried or currently in use for Jenelle:
Phenobarbital still being used: No effectiveness: Neutral max. dose: 30mg
Corticotropin (ACTH) still being used: No effectiveness: Negative max. dose: 50 units per day
Pyridoxine (Vitamin B6) still being used: No effectiveness: Neutral max. dose: 100 MG a day.
Vigabatrin (Sabril) still being used: No effectiveness: Positive max. dose: 750 mg, twice a day
Topiramate (Topamax) still being used: No effectiveness: Positive max. dose: 100mg twice a day
Clonazepam (Klonopin, Rivotril) still being used: No effectiveness: Neutral max. dose: 1/4 a pill, twice a day (.5mg pills)
Lamotrigine (Lamictal) still being used: No effectiveness: Positive max. dose: 10mg twice a day
Felbamate (Felbatol) still being used: Yes effectiveness: Positive max. dose: 600mg in AM, 400mg in PM
Ketogenic Diet Jenelle started the Ketogenic Diet at UCLA on April 18, 2005 on a 3:1 ratio. After 3 weeks, Jenelle became very ill with meningitis, and was taken off the diet. still being used: No effectiveness: Positive
Phenytoin (Dilantin) still being used: No effectiveness: Neutral max. dose: 50mg a day
Diastat (Diazapam) (as needed for emergency) still being used: Yes effectivness: Positive max dose: 10mg
Clorazepate (Tranxene - behavior drug) still being used: Yes (weaning) effectiveness: Positive max. dose: 3.25mg in AM & PM
Risperdol (behavior drug) still being used: Yes effectiveness: Positive max dose: .50mg in AM, .25mg in PM
Zantac (for reflux) still being used: No effectiveness: Positive max. dose: 2.5 ml twice a day
Miralax (for constipation) still being used: No effectiveness: Positive max. dose: 2tsp every other day
Bi-Citra (for acidosis) still being used: No effectiveness: Positive max. dose: 20mls three times a day
How do you get drugs from Canada? Jenelle used Vigabatrin which is not FDA approved in the United States. In order to use this drug, we had to have our Neurologist provide us with a written prescription that we faxed to a pharmacy in Canada. In over a year, we only had one problem with our medication being held at customs. During that time, our pharmacy re-sent our prescription via Federal Express.
I strongly recommend Mark's Plaza Pharmacy in Vancouver, Canada.
Marks Plaza Pharmacy 5760 Cambie St. Vancouver, BC V52-3A6 604-324-3848 877-888-9265
Who is Jenelle's doctor?
Jenelle's Neurologist is Dr. W. Donald Shields at UCLA. Her Gastro Intestinal doctor is Dr. Idries at CHOC, her metabolic doctor is Dr. Richard Chang at CHOC and her Opthamologist is Dr. Florencio Ching at CHOC.
I think my child is having seizures, what do I do? If you suspect your child is having seizures, you should contact your doctor and get a referral to a Neurologist. If you can, try to get into an Epileptologist, which is a Neurologist with special training in epilepsy.
Video tape your concerns regarding your child and anything you may suspected are seizures. Take it with you to the Neurologist. Request an EEG.
Every moment lost to seizures is a moment lost in development for your child. If you suspect anything, you need to act quickly and go with your gut instinct.
Why "Jenelle's Avocados?"
2005 was the first year we participated in the Epilepsy Freedom Walk. A good friend of mine in Virginia had a young son (age 7) who was very moved by Jenelle's story. He made his own efforts to raise money for our team with a Lemonade Stand and lawn services for his neighbors. At the time, he told his Mother that he wanted to grow up to be Jenelle's "Avocado"; meaning he wanted to be her "advocate!" The name stuck. How can I contact you?