Is there a cure?
There is no cure for GRIN2B syndrome, but therapy, nutritional support and medications can help manage symptoms, prevent complications and improve quality of life.
The information in this section was gathered by parents who completed a survey asking them what types of treatments their children had received. Not every child with a GRIN2B variant will need/benefit from each of the therapies/treatments below. Please consult with your child’s medical team to determine your child’s needs. If you would like to know specific information on how some of our children are responding to any of these treatments, please contact us at firstname.lastname@example.org or ask a question in the private Facebook group.
- Geneticist: Diagnoses and manages hereditary disorders.
- Neurologist: Treats nervous system disorders.
- Orthopedic Specialist: Monitors musculoskeletal system and assists with equipment recommendations.
- Speech therapist: Specializes in development of oral motor skills and communication.
- Occupational Therapist: Improves daily living and work skills of patients.
- Developmental Therapist: focuses on integration of cognitive skills, language and communication, social-emotional skills and behavior, gross and fine motor skills, and self-help skills.
- 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.
- Physical Therapy / Physiotherapie
- Speech Therapy
- Occupational Therapy
- Developmental Therapy
- Behavioral Therapy
- Swim Therapy
- Music Therapy
- Recreational Therapy
- Conductive Education
- Picture Exchange Communication System (PECS)
- Therapeutic Brushing Techniques – The Wilbarger Deep Pressure and Proprioceptive Technique & Oral Tactile Technique
- Hyperbaric oxygen therapy
Dietary and Supplements
- Nutritional support
- Ketogenic diet (for those with seizures)
- Gluten free diet
- Dairy free diet
- Fish oil supplements
- Essential Oils
- Hemp Oil (Several children are specifically using Haileigh’s Hope)
The parents who completed our survey told us their children have previously or are currently taking medication to help regulate seizures, reflux, digestive issues, ADHD, sleep and/or anxiety. 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 medicines are commonly discussed in our Facebook group:
- Memantine – Memantine is an antagonist of NMDA receptors. This drug is normally used in Alzheimer’s patients, but is being re-purposed for use on GRIN2B patients. Memantine should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed. For information about possible upcoming clinical trials, head over to News.
- 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.
Report of a parent survey of cannabidiol-enriched cannabis use (abstract only)
The cannabinoid receptor 1 associates with NMDA receptors to produce glutamatergic hypofunction
GRIN2B Foundation is not endorsed by any of the branded products listed below. The information in this section is intended to provide general information and to educate readers about what types of special needs products are available. Please do your own careful research before purchasing any of these products.
- Orthotics (afo’s and smo’s)
- Compression undergarments – i.e. spio, theratogs
- Augmentative and Alternative Communication device (AAC)
○ Tula Carriers
○ My Free Loader
- Special needs potty chair
- Pediatric bath chair
- Special needs car seat
- Swing – Joki by LA SIESTA
- Standard triangle seat
- Weighted blanket – Sensa Calm
- Chewy tubes
- Safety bed
○ The Safety Sleeper
○ Ready Set Bloom
○ Cyr Designs