Seizures, Developmental Impairment –  Treatments and Therapies

Treat the whole child. Start with the basics: excellent nutrition, good sleep, and balanced physical activity. See a nutritionist early. Know your child’s daily calorie, hydration, and protein targets. Ensure the diet covers key brain-supporting vitamins and minerals, and have a simple seizure-day nutrition plan—what to do if intake drops, how to keep fluids/electrolytes up, and how to protect energy and recovery especially on seizure days.

AEDs

(Anti-epileptic Drugs)

There is no known therapy or drug that has proven to work for our girls affected by epilepsy.  AEDs may or may not provide benefit but there is no known single drug or combination of drugs that provides a complete 100% life-long seizure control. Despite available AEDs, our kids continue to have seizures.

The current treatment requires patients to “trial” AEDs and combinations till seizure improvement is achieved. This is a lifelong treatment with some or no benefits.

Current list of AEDs

Non-Medication Treatments

(Alternative therapies for Anti-epileptic Drugs)

VNS has shown good benefits for our kids, discuss this option with your neurology team.

Diet, Surgery, and Brain Stimulation Treatment can be suitable in some cases. See more on Non-medical Epilepsy treatments.

Therapies to Improve Quality of Life

Developmental impairment is treated with conventional therapies such as speech, physical, occupational, feeding, ABA and/or other. These therapies do not cure your child or help your child to catch up with the mainstream. These are provided as “support” with the goal to help a child progress and improve overall quality of life. 

Seizures and developmental impairment are permanent lifelong conditions that last for life time.  Frequent uncontrolled seizures increase the risk of further developmental impairment, related medical complications, or unexpected death but SMC1A DEE itself does not result in death. Our kids are expected to live a full life span with this disease.

The medical people are providing medical support only, they are unable nor responsible providing a cure or effective treatments. Cure and effective treatments do not exist.

Some AEDs or combinations may help reducing the severity of seizures but AEDs do not cure our kids from seizures.  Available AEDs have not shown to provide a long term seizure control in our kids.