Managing ARG1-D
Currently, this condition is managed by restricting dietary protein intake and by adding dietary supplements and medications as prescribed by your healthcare team
Restricting diet can be a challenge for many families managing ARG1-D. Fortunately, there are people to help. Your care team may include a dietitian, who can help you plan meals and shopping trips.
ARG1-D is typically managed by a team of multiple specialists
These healthcare providers all play different roles in understanding and managing ARG1-D. Your care team may include some or all of these providers. You may also need other specialists as well.
Primary Care Provider or Paediatrician
Your primary care provider or paediatrician can help you stay on top of your overall health. They’ll keep track of treatments and medical history as you work together to best manage your ARG1-D.
Neurologist or Paediatric neurologist
A neurologist or paediatric neurologist can help manage the health of the nervous system. This may be crucial when it comes to making sure you have the best approach to managing challenges like missed developmental milestones, intellectual delay, seizures, and other neurological symptoms.
Metabolic (Genetic) Specialist
Your metabolic or genetic specialist will be the person most involved in day-to-day management. When it comes to creating a management plan, they can help. Working together with your metabolic specialist can bring you closer to your goal of slowing the progression of the disease.
Physical Therapist and/or Movement Disorder Specialist
ARG1-D can cause physical problems like stumbling or tripping, as well as muscle tightness, also called spasticity. Physical therapists and movement disorder specialists can be very important members of your care team. They can tell you which exercises and stretches are the most effective. Their main goal is to help achieve the best possible mobility for day-to-day living.
Dietitian
One of the main ways to manage ARG1-D is to balance nutrition, and your Dietitian will help along the way. Restricting protein and avoiding foods with arginine may not be easy, but by working together you can make a plan that works best for you and your family.