At more than 150 MDA Care Centers nationwide, kids and adults living with neuromuscular disease (NMD) have access to multidisciplinary care teams made up of different specialists who can coordinate in one place on an appointment day to optimize a complete care plan. Included on these teams are allied health professionals and social workers who can support individual treatment and planning aspects of daily life with an NMD. In this multi-part blog series, Who’s On Your MDA Care Center Team?, we sit down with some of the allied health professionals working with Care Center teams to find out more about their roles, when patients should loop them into care plans, and what advice they have for those adjusting to life with NMD.
Umme Salma Vahanvaty MS, RD, is a registered dietitian nutritionist (RDN) at the Neuromuscular Clinic at Children’s Hospital Los Angeles (CHLA). Umme Salma received her master’s degree in food and nutrition at Mumbai University, India. She completed her dietetic internship, which specialized in working with children with special healthcare needs, at the University Center for Excellence in Developmental Disabilities, affiliated with CHLA, in 2003. As an RDN for the last 16 years, Umme Salma has been involved in caring for children and young adults with special needs in a variety of community and clinical settings.
As a dietitian, what do you do? What is your role in the MDA Care Center multidisciplinary team?
As a dietitian, my role is often perceived as that of the “food police,” and I am often the one healthcare professional who my families are nervous about meeting. Food is such an inherent part of our culture and family that discussing food habits can make patients and their families feel vulnerable. However, I view my role more as that of a collaborator and a facilitator.
My role as a dietitian on the team is to try and balance what my patients’ health goals are with what their body is telling me about their current health status. To do that, I monitor the weight and linear growth in children and teens, and weight for adults. I also do additional measurements to help paint a clearer picture of my patients’ nutritional status, such as skinfolds and alternate height measures. Reviewing pertinent labs and daily food intake helps me understand if a patient has any dietary deficiencies or imbalances.
I discuss my concerns with the patient and other team members because what my patients eat is often a symptom of the bigger picture in their lives. For example, if my patient is not eating regular meals or adequate portions of foods, could it be related to their social situation (do they have access to a kitchen or do they have a caregiver), or could it be related to a decline in their muscle strength? Understanding the whole picture helps me discuss more pertinent interventions with my patients.
How does nutrition play a role in the management of neuromuscular disease?
The role of nutrition in the management of neuromuscular disease varies with the kind of diagnosis and the stage of the diagnosis. In some diagnoses and at a younger age, the focus is simply on incorporating healthier eating habits for life. As the disease progresses or my patient is preparing or recovering from surgery, nutrition may play a more important role. Like the need to modify textures or the need to make dietary changes to address some issues like constipation, adequate protein intake, and weight gain or loss.
Several vitamins and minerals play an important role in the management of neuromuscular diseases. These are not a “cure” for the diagnosis, but a deficiency of these will not help my patients optimize their health. Some of the most pertinent nutrients for neuromuscular diagnoses are:
- Calcium and vitamin D: These help muscles move and carry messages between the brain and the body. They are also essential for maintaining bone health.
- B vitamins: Vitamins B6, B12, thiamin, niacin, and folic acid are all involved with helping cells in the body grow, stay healthy, and effectively use food as a source of energy.
- Vitamin E: This maintains muscle function and helps with brain-body communication.
- Copper: This is essential for immune function and for the health of the nervous system.
- Zinc: This is important for growth in children, immune function, and the health of the nervous system.
What are some of the specific issues you see affecting individuals with whom you work?
Because the spectrum of neuromuscular diseases is so wide and varied, the issues and concerns vary and are different in my pediatric and adult populations. However, some of the common underlying issues are:
- Achieving a healthy weight: Controlling weight gain is challenging when there is a decline in the ability to keep moving and stay active. Patients may also need to take medications like steroids that accelerate weight gain. At the other end of the spectrum, some patients find it hard to keep up with their bodies’ increasing energy demands related to infections or a decline in their ability to consume adequate amounts of calories by mouth. This can lead to them being underweight.
- Aspiration: People can struggle to admit a decline in feeding skills and muscle strength, or they may have learned to adapt to changes so naturally they do not consider aspiration to be an issue. However, difficulty chewing and swallowing foods and liquids can greatly limit the quality of nutritional intake and may cause weight loss and decline in nutritional status.
- Reluctance to consider an alternate source of nutrition: People are often afraid of using a feeding tube as a sole or supplemental source of nutrition. It should be viewed as an additional tool available in the management of their diagnosis.
- Constipation is another real issue people are often embarrassed to discuss or do not consider a problem. This in turn also affects their intake and sense of well-being. Inadequate fluid intake, especially if water is not a preferred beverage, may cause constipation and dehydration. Fluids can actually be incorporated from many different sources other than water, such as milk, juices, yogurt, Jell-O, and soups.
- Questions about supplements: Families are often curious about social media and ads regarding certain micronutrients or diets that may be able to improve muscle strength. I am a supporter of alternate therapy, but I am concerned if it involves eliminating certain food groups or mega doses of vitamins/minerals, or if the supplements interact with medications.
When should patients involve a dietitian in their treatment plan? What questions should they ask, and how can they help best inform you of what they need?
It is useful to see a dietitian at least one to two times a year so you can develop a relationship with the dietitian and feel comfortable discussing health and nutrition goals. Do not hesitate to contact your dietitian in between clinic visits via phone or email as questions and concerns arise.
Some questions to ask your dietitian are:
- How can I eat a varied and balanced diet when my speech or occupational therapist has asked me to modify my food textures?
- Should I be taking any supplements for bone health or based on my lab results?
- Are certain over-the-counter supplements appropriate?
- What labs are being monitored annually and are there any other labs I need to monitor?
- What are my current calorie, protein, and fluid needs, and am I meeting them based on my typical intake?
- How do I balance intake of foods with supplemental nutrition via a feeding tube or by mouth?
- What options do I have besides commercially available, ready-to-feed supplements for my feeding tube or to boost my caloric and protein intake?
How can dietitians help patients thrive?
Self-awareness is the most important step in the path toward achieving better health. As a dietitian, I explain to my patients their nutritional status and risks based on their body measurements, labs, and intake. This helps my patients decide what they want their goals and priorities to be. Based on what my patient wants to work on, I discuss with them information that will help them achieve their healthcare goals.
Meeting my patients where they are and making their goals a priority (even if they are different from my personal goals for the patient) helps a patient thrive.
What kind of follow-up or long-term nutritional assistance should individuals plan for?
Individuals should make sure that they are meeting a dietitian at least one to two times a year. They should educate themselves about alternate methods of nutrition. It will be helpful to think through the kinds of adaptive equipment and support that they will need in accessing, storing, and preparing foods. Also, people should speak to their social worker about what resources are available locally to help them obtain meals or feeding tube supplies and formula if needed.
What advice do you have for individuals living with neuromuscular disease?
My patients will often allow themselves to eat unhealthy foods to make up for everything else that they have lost to their disease. I encourage them to look at food not as an emotional crutch but as a way to nourish the body and mind and optimize physical well-being. I also encourage people to find skill-appropriate activities and things other than food that give them happiness and comfort in their lives.