Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science accessible and empower rare disease community members with scientific knowledge. Dr. Brown has over a decade of experience in neurodevelopmental research and is currently the Scientific Director for TESS Research Foundation. Please reach out to her at [email protected] if you have questions or comments.
This article was written by Kaitlyn O’Connor.
Who is my care team, and what do they do?
These are just a few of the questions many patients and their families have after receiving a diagnosis. This article will provide an overview of a typical care team you might encounter throughout your medical journey.
Most people know their primary care provider, who they see for their annual physical and most general health issues. However, the care team is often far more complex and made up of more than just one person. For people in the SLC13A5 Epilepsy community, the care team usually requires multiple specialists working together to help manage and treat the symptoms that are a result of an SLC13A5 Epilepsy diagnosis. A good way to think about the members of the care team is as pieces of a puzzle. When your care team works together and communicates effectively, they ultimately connect together providing the best care possible.
However, sometimes care teams are a bit disjointed struggling to talk to one another, leading to less than optimal care. Early on in the process of treatment it is common for care teams to take a bit of time to get their footing to assess and develop treatment. This may feel disconnected, but as treatment progresses it should start to feel more streamlined, especially as your different care team members get to know you, your family, and the other members of your care team. With this in mind it is important t0 acknowledge if your care continues to feel disjointed and to have a discussion with your care team about your concerns. Let’s walk through some of the care team members in the SLC13A5 Epilepsy community. These examples are frequently found in many genetic epilepsy care teams as well.
Neurologist
A specialist who treats, diagnoses, and manages illnesses of the nervous system. The nervous system consists of: the brain, the spinal cord, and nerves.
Why might you see this care team member?
You may be referred to see a neurologist for a variety of reasons. Namely, if you have unexplained symptoms that are impacting your brain, spinal cord, or nerves. A person might seek a neurologist for help with chronic migraines, epilepsy, movement disorders… the list goes on. Neurologist’s are responsible for treating and managing a variety of neurological disorders.
When could be a good time to add this specialist?
Once you are referred to a neurologist because of neurological issues they will be added to your care team.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
SLC13A5 Epilepsy is a condition that greatly affects the nervous system, so incorporating a neurologist on your child’s care team is a must.
Epileptologist
An epileptologist specializes in the treatment, diagnosis, and management of epilepsy. They frequently are neurologists who have chosen to specialize in epilepsy – this means they have gone through additional training specific to understanding and caring for people with epilepsy. It is common for people to have both a neurologist and an epileptologist on their care team, as epileptologists are able to provide more specialized care regarding seizures.
Why might you see this care team member?
A patient would be referred to an epileptologist because they are having seizures.
When could be a good time to add this specialist?
After a seizure diagnosis from a neurologist a patient would be referred to an epileptologist to begin to manage and treat the epilepsy.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
Seizures are the most common disability that is associated with SLC13A5 Epilepsy. Having an epileptologist is crucial to managing your child’s seizures, their medications, and overall treatment of their epilepsy.
Physical Therapist (PT)
A healthcare provider that works with patients to regain and maintain their physical abilities. Patients may meet with a PT weekly, biweekly, monthly, or whatever works best for them. PTs will work in session with their patients and offer at home exercises for patients to do between sessions.
Why might you see this care team member?
You might see this member if you or your child has a physical injury or movement disorder.
When could be a good time to add this specialist?
Following injury or the presence of a lifelong disability would be a reason for someone to seek treatment from a PT.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
Individuals with SLC13A5 Epilepsy typically have delayed or impaired motor function, which is a result of any number of movement disorders that are commonly associated with the disease. A PT can help in managing those disorders.
Occupational Therapist (OT)
Similar to a Physical Therapist. However, OTs specialize in helping individuals with daily activities like, dressing, bathing, and handwriting. OTs focus more so on fine motor skills. The goal of an OT is to help their clients participate meaningfully in life.
Why might you see this care team member?
Following an injury or in the presence of disability one may see an OT to help manage a variety of things. OTs can help with chronic pain management, recovery after surgery, and adaptive living skills.
When could be a good time to add this specialist?
Once it is apparent that your child is experiencing difficulty performing daily tasks that are expected of them (like the ones mentioned above) it is time to seek an OT evaluation.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
It is common for patients to see both a PT and OT. Individuals with SLC13A5 Epilepsy will see an OT to seek management of the deficits in fine motor skills that are a result of the various movement disorders associated with SLC13A5 Epilepsy.
Genetic Counselor
The healthcare professional who specializes in genetics. They play a crucial role in family planning.
Why might you see this care team member?
A genetic counselor specializes in many areas regarding genetics. They may help with genetic risk assessment, where a patient’s medical history is evaluated to better learn about potential inherited genetic conditions. They help with genetic testing, where individuals take a test to better understand their genetics and potential for passing down certain genes.
When could be a good time to add this specialist?
A person might seek out a genetic counselor if they have a family history of a genetic condition. Or if they suspect they have a genetic abnormality and want to better understand it.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
SLC13A5 Epilepsy is an illness that is the direct result of a gene mutation. It is extremely important to have a genetic counselor on your team. They can provide a variety of insight into your child’s genetics, as well as assist with family planning if you hope to have more children.
Dentist
A healthcare provider who specializes in dental care.
Why might you see this care team member?
Everybody sees the dentist to ensure healthy teeth and gums.
When could be a good time to add this specialist?
Like a primary caregiver, it is strongly encouraged that everyone has a dentist on their care team as seeing a dentist is the only way to ensure having healthy teeth.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
Children with SLC13A5 Epilepsy need to see a dentist because the gene mutation causing the illness can result in weaker enamel, leaving patients more susceptible to cavities and tooth decay. Seeing a dentist can prevent such things from happening and will hopefully lead to healthier teeth.
Mental Health Professionals
These specialists come in a variety of forms. Most people working on their mental health will see a psychologist or a psychiatrist. Psychologists are responsible for helping patients cope and understand their thoughts, feelings, and resulting behaviors. Whereas psychiatrists are responsible for assessing, diagnosing, and helping manage behavioral and mental health issues.
Why might you see this care team member?
One may see a psychologist to have someone to talk to about challenges that are present in their life. Or your child may be referred to see a psychologist for the same reason.
You may be referred to psychiatry after seeing a psychologist to help assist with prescribing medication/medication management.
When could be a good time to add this specialist?
When someone feels like they are overwhelmed or struggling, especially when a person is feeling depressed, they should seek out a mental health professional.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
You or your child may wish to see a mental health professional because of the stressors of living as someone or caring for someone that has been diagnosed with SLC13A5 Epilepsy.
Child Life Specialist
Have an incredibly unique role in healthcare. Their job is to help manage the emotional, social, and general hospital experience of the sick child and their family. They provide a variety of support for children in the hospital from providing games, movies, coloring activities, and facilitating group sessions. A fan favorite is when they bring therapy dogs to come say hi to the kids on the floor.
Why might you see this care team member?
The time in which one might encounter a child life specialist is when their child is staying in the hospital.
When could be a good time to add this specialist?
During your hospital stay a child life specialist will temporarily be added to your care team for the duration of your stay.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
It’s likely a child with SLC13A5 Epilepsy will spend some time in the hospital on occasion. When that happens, child life specialists are there to make the hospital stay more bearable for kids and their parents.
Social Worker
Provide emotional support for patients, act as an advocate for the patient’s family, and also serve as the liaison between the patient and the hospital. They help navigate lots of stressful situations for impacted families.
Why might you see this care team member?
A patient’s family may be assigned a social worker to navigate the healthcare system when making difficult decisions. Or to just generally assist with the emotional well-being of the patient and family.
When could be a good time to add this specialist?
Upon receiving a SLC13A5 Epilepsy diagnosis, families will start to spend more time in and out of the hospital. This is when you’ll start interacting more and more with social workers. When spending time in the hospital it is good to establish relationships with social workers as they are the most effective means of communication with hospital admin.
Why would I see this provider when my child has been diagnosed with SLC13A5 Epilepsy?
A social worker can help with understanding different treatments, as well as answering any questions patients may have about the hospital.
Conclusions
Not every specialist discussed in this article may be part of your care team, and there may be some specialists not listed above that are a part of your team. It is important that regardless of who is on your care team that you understand each member’s role and that you feel like you connect with your providers.
Many people wonder, how do I find the right care team member? Most people receive a referral to a specialist, and from there most insurance companies can share a list of providers who are covered. From that point it is up to individual intuition to determine if the provider is a right fit for your needs. People with illnesses may have to get second opinions leading them to have multiple providers for the same specialty. Remember, your care team should always be in your corner doing what is best for you.
Images were produced using BioRender.com.
We want to hear from you! If you want to add to our list of topics for Science Simplified, please email Tanya Brown, PhD: [email protected].
