IS THERE A CURE?
There is currently no cure for a HIST1H1E diagnosis, but therapy, nutritional support and medications can help manage symptoms, prevent complications and improve quality of life.
Not every child with a HIST1H1E diagnosis will need/benefit from each of the therapies/treatments below. Please consult with your child’s medical team to determine their specific needs.
Geneticist: Diagnoses and manages genetic disorders.
Neurologist: Treats nervous system disorders (epilepsy, abnormal movements).
Rehabilitation and Orthopedic Specialists: Monitors musculoskeletal system, therapies and assists with equipment recommendations.
Speech therapist: Specializes in development of oral motor skills and communication, including assistive and augmentative communication (AAC).
Occupational Therapist: Improves daily living and work skills of patients.
Behavioral Therapist (eg., Board Certified Behavioral Analyst, BCBA): focuses on applying behavioral principles to promote social and adaptive skills and reduce challenging behaviors. A developmentally focused behavioral therapist will consider the integration of cognitive skills, language and communication, social-emotional skills and behavior, gross and fine motor skills, and self-help skills.
Teacher of the visually impaired (TVI) and Vision Therapist: Adapts learning environments to accommodate perceptual-cognitive deficiencies.
Physical Therapist: Works to improve muscle strength and function through physical movements, exercise, and stretching.
Nutritionist: Specializes in food and diet recommendations and provides guidance on digestive complications.
THERAPY & NUTRITION
Physical Therapy / Physiotherapie
Ketogenic diet (for those with seizures)
The following is a list of treatments/therapies that are not empirically validated, but some parents have found success with these.
Therapeutic Brushing Techniques – The Wilbarger Deep Pressure and Proprioceptive Technique & Oral Tactile Technique
Dairy free diet
Gluten free diet
Fish oil supplements
Many HIST1H1E patients currently take medication to help mitigate specific symptoms such as seizures, reflux, digestive issues, ADHD, sleep and/or anxiety. Your child’s medical professional should be able to help you determine what specific symptoms can be treated.
Please consult with your child’s doctor if you are interested in starting any of the below-mentioned medications for your child. Remember, we are not medical professionals. We are parents sharing information on what has worked for our children.
The following two types of treatments are commonly discussed in our Facebook group:
NMDA receptor specific drugs – While there have been a few case reports using these drugs, use of these drugs outside of a clinical trial should be discouraged until we all understand the safety and benefits of these drugs, especially in children with developing brains.
Cannabis oil – used for the treatment of seizures and to improve cognition and behavioral problems. You will have to check with your state or country’s laws regarding cannabis oil use as it varies, depending on where you live. Epidiolex is a branded (from GW Pharmaceuticals), purified cannabidiol (CBD) that has been approved by the US FDA for specific types of epilepsy.