	Personal info Child
	name: Brandon R
	sex: Male
	7/28/1992 - 5/25/1998

(Click for larger picture)	country: NY USA

Epilepsy info

primary diagnosis: Landau-Kleffner Syndrome
additional:
cause: Unknown
date diagnosed: 7/96
type(s) of seizures: Grand mal, drop
frequency of seizures: Drops-approx. 10 daily Grand mal-1-3 every 5 days
additional health issues:

Medications used (in chronological order)

Carbamazepine (Tegretol, Carbatrol)
- still being used: No
- effectiveness: Negative
- positive effect: None
- side effects: Diarrahea
- comments: Temporary decrease of seizures, caused diarrahea
Phenobarbital
- still being used: No
- effectiveness: Negative
- side effects: Hyperactivity
- comments: Became uncontrollable, Did not control seizures
Phenytoin (Dilantin)
- still being used: No
- effectiveness: Unknown
- side effects: Became toxic
- comments: Became toxic-taken off, did not control seizures
Lamotrigine (Lamictal)
- still being used: No
- effectiveness: Unknown
- positive effect: No major side effects
- comments: No established level, taken off-no seizure control.
Clonazepam (Klonopin, Rivotril)
- still being used: No
- effectiveness: Unknown
- side effects: Uncontrollable behavoir, extreme drowsiness, seizures worse
- comments: Taken off due to negative behavoirs, drowsiness and it made seizures worse.
Divalproex (Depakote, Depakote Sprinkles, Epilim)
- still being used: No
- effectiveness: Unknown
- side effects: Became toxic
- comments: Could not maintain consistant level-became toxic.
Acetazolamide (Diamox)
- still being used: Yes
- effectiveness: Unknown
- max. dose: 125 mg 3x's/day
- positive effect: No side effects
- comments: This med had given Brandon no side effects but helps very little with seizures. Still on Diamox, waiting to start Steroid therapy.
Topiramate (Topamax)
- still being used:
- effectiveness: Unknown
- side effects: Tired with each increase
- comments: Never achieved highest dose.

Alternative Treatments (in chronological order)

Ketogenic Diet
- details:
- still being used:
- effectiveness: Unknown
- positive effect: Took away "most of his drop seizures"
- side effects: Constantly became "Ketotic" when sick.
- comments: Was a good alternative-took away most of his seizures, however, was very hard to manage. Brandon experienced excessive hungerness and increased irratibility. Now off the diet he is happier and is able to eat what and whenever he wants. Would have continued the diet, but our main goal to increase language "decreased" while on the diet.

Surgeries (in chronological order)

Multiple Subpial Transection (MST)
- details:
- surgery date:
- effectiveness: Unknown
- comments: Brandon had MST surgery on May 18 and 20, 1998 in Omaha, NE. We are very sad to have never had a chance to see any results of the surgery as he passed away 5 days after his 2nd surgery, due to a massive ulcer.

Personal Notes

Brandon developed normally for two years, until he started having seizures. He began having Grand mal seizures and then changed to drop-to present time a mixture of both daily. Brandon has been on multiple meds. and after 14 months, started the Keto diet. While the diet took away "most" of his drops, his language also regressed. After 1 year on the diet and almost all of his language gone, he was hospitalized @ Johns Hopkins Hospital in MD. for a series of tests to include: 24 hour EEG for 5 days, MRI, CATscan, Spinal tap,and multiple blood draws for metabolic and degenerative brain diseases. All tests with the exception of the EEG were "normal," his EEG showed abnormal spike waves in the front left hemisphere while sleeping. And abnormal spike waves throughout the brain while he was awake. He was then diagnosed(7/96) with "Acquired Aphasia with Convulsive Disorder" or LKS. We are currently consulting a Neurologist in NYC(Columbia Presbytarian) who will start Brandon on Steroid therapy. We are trying to find another Neurologist not too far from NY with more knowledge and experience with LKS children. To date, Brandon still has frequent drop seizures and grand mal seizures, he also has extreme trouble sleeping. His vocabulary includes 5 - 10 recognizable words with repetitive sounds and "autistic like" behavoirs. Update 5/31/98 On Memorial day 1998, just 5 days after Brandon's 2nd MST surgery, he passed away. The autopsy report revealed that he passed away due to a massive ulcer. Even though our son is physically gone, his memory and spirit will live in all of those he touched, forever.

Contact info