How old is Jenelle?
Jenelle is 13 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), low muscle tone, and is mentally retarded (functioning at the mentality of a 18 month to 2 year old child) and is fed by G-tube for failure to thrive. In 2013, Jenelle was diagnosed with mild Cerebral Palsy.
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 medically fragile. Now that she can walk, Jenelle is also at risk for elopement. Jenelle requires 24 hour supervision for all daily living tasks, including sleep.
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.
Here is a link to some videos that I have posted here in the past.
What therapies do you do with Jenelle?
Jenelle receives services from Regional Center and through our School District. She attends a special needs school where she receives various therapies, 6 hours a day, that include Physical Therapy, Occupational Therapy, Speech Therapy, Vision, Orientation and Mobility and other various inclusion type therapies with typical kids.
What equipment does Jenelle have?
Jenelle has a Convaid wheelchair stroller. She wears an AFO on her right leg to keep from turning in her ankle when she walks. From ages 1 to 4, Jenelle used a walker/stander at school. We also used to use a Lecky Bath Seat during bath time, and our Peg Prego high chair for feeding until she was about 7 years old. I keep it lowered to the floor so she wouldn't tip it over.
What medications is Jenelle taking?
Jenelle is currently taking Onfi (for seizures), Felbamate (for seizures), Risperdol (for behavior), Trihexyphen (for muscle control), Melatonin (for sleep issues) and Miralax (for constipation), Clonazapam (for behavior), Zarontin (for seizures) and Jenelle has a VNS Aspire. She mostly eats solid foods by mouth, and we use the G-tube for feedings when she is ill or post-ictal after a seizure. We also use the VNS Magnet to stop prolonged seizures and Diastat as a rescue med for seizures longer than 5 minutes.
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: Yes (for behavior - as needed)
Effectiveness: positive
max dose: 10mg three times a day
Lamotrigine (Lamictal)still being used: No
effectiveness: Positive
max. dose: 10mg twice a day
Felbamate (Felbatol)still being used: No, but added back in 2014
effectiveness: Positive
max. dose: 300mg three times a day
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: No
effectiveness: Positive
max. dose: 3.25mg in AM & PM
Risperdol (behavior drug)still being used: Yes
effectiveness: Positive
max dose: 3mg twice a day
Zantac (for reflux)
still being used: No
effectiveness: Positive
max. dose: 2.5 ml twice a day
Miralax (for constipation)still being used: As needed
effectiveness: Positive
max. dose: 2tsp
Bi-Citra (for acidosis)
still being used: No
effectiveness: Positive
max. dose: 20mls three times a day
Vimpat (for seizures)
still being used: No
effectiveness: Positive
max. dose: 100mg twice a day
Banzel (for seizures)
still being used: No
effectiveness: unknown
max. dose: 600mg twice a day
Onfi (for seizures)
still being used: Yes
Effectiveness: Positive
max dose: 15mg in PM
Trihexyphen (for CP/Muscle control)
still being used: Yes
effectiveness: positive
max dose: 5ml twice a day
Zarontin (for seizures)
Still being used: YES
Effectiveness: Positive
Max Dose: 15ml twice 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 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 are Jenelle's specialists?
Jenelle was followed by Dr. W. Donald Shields at UCLA for Neurology until his retirment in 2014. She is now followed by Dr. Lily Tran at CHOC for neurology
Dr. Shaneen Idries at CHOC - Gastro Intestinal
Dr. Samuel Rosenfeld at CHOC - Orthopaedics
Dr. Sandhya Gudapati - Psychiatry
Dr. Joffrey Olaya - Neurosurgery
Dr. Richard Chang - Metabolics and Genetics
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.
How may I contact you? jenellesmommy (at) gmail (dot) com
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3 comments:
Oh dear, your Avocado friend has broken me up completely.
What a great blog, Jenelle, and I am so glad to hear your chemotherapy is going reasonably well. Came here via Postcards from Holland.
My daughter is a comedienne who has epilepsy - her brother has autism and epilepsy. She would say you are 'fine soldiers'. All power to your family, dear lady.
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