A team of specialists in the treatment of individuals with spinal muscular atrophy (SMA) created the Consensus Statement for Standard of Care in SMA. The consensus statement aims to give recommendations for the most recent treatments and act as a reference for medical professionals.

It’s critical to realize that these are only recommendations; the consensus recommendations are meant to be a broad guideline and should not be regarded as strict guidelines for treatment.

It’s critical to understand that there are things you can do to support your kid with SMA in learning and development to the best of their abilities while also keeping them safe and comfortable. Five essential topics for discussion with your physicians or therapists are suggested by SMA experts:

Verifying the SMA diagnosis
Controlling respiration
Controlling one’s diet and dietary intake
Organizing daily tasks and movement
Getting ready for sickness.
Verifying the SMA diagnosis
Request a blood test if SMA is suspected in order to confirm or rule out the illness.
Discuss the implications for your family with your physician or a genetic counselor if SMA is diagnosed.
Find out more about the particular health issues related to SMA and collaborate with your healthcare team to create a customized treatment plan for both you and your kid.
The need of the hour is to set up a multidisciplinary team that includes a pediatrician, neurologist, orthopedician, pulmonologist, nutritionist, physiotherapist, and, if necessary, a child psychologist and a genetic counsellor to care for a child with SMA.
Optimizing OPD-based care and preventing hospitalizations are the two main objectives of optimal SMA care.

Handling Issues with Breathing
The most common cause of sickness for those with SMA and the leading cause of death for children with Type I and Type II disease are respiratory or breathing issues. Your child may be more vulnerable to respiratory infections if they have weak muscles. Patients with SMA require critical respiratory treatment to ensure their survival and quality of life.

As soon as feasible following diagnosis, a pulmonologist experienced with SMA management difficulties should be consulted. The physician will assess your child’s breathing and coughing technique and offer suggestions to assist maintain your child’s clear airway.
Depending on the severity of the illness, non-invasive ventilatory assistance such as bi-level positive airway pressure devices (BiPAP) and manual or mechanical cough assist devices may be helpful tools.
Additionally advised are flu vaccines and routine immunizations.
Create a care plan in collaboration with the medical staff to avert issues.
Create a care plan with the medical staff to utilize in the event that your kid has a more serious disease that necessitates hospitalization, or during an acute respiratory infection like the flu or a cold.
Handling Issues with Feeding
Undernourishment or overnourishment can both negatively impact a person with SMA’s quality of life, especially in children. Your child’s growth should be routinely monitored by your medical team, who will also collaborate with you to create a customized feeding and nutrition plan for your child.

Using a growth chart, track your child’s development and collaborate with your healthcare provider to create a customized feeding schedule.
Speak with your team about creating practical solutions if your child has gastric reflux, has difficulty swallowing, or is constipated.
Keep an eye out for digestion or eating issues and devise plans to avoid aspiration pneumonia.
Controlling Mobility and Everyday Tasks
The most noticeable sign of SMA is muscle weakness, which varies from person to person based on the degree of the illness. To help your kid reach his or her maximum level of function and independence, care plans for treating muscle weakness of the arms, legs, trunk, and neck are essential.

To help your kid reach their maximum level of function and independence, collaborate with occupational therapists, speech therapists, physical therapists, and/or rehabilitation specialists to create a physical therapy plan.
Take into account using equipment, assistive technology, and exercise to help with breathing, eating, working, and playing.
To help avoid or slow down spinal curvature, think about using assistive equipment (Scoliosis).
a routine orthopaedic assessment.
Getting Ready for Sickness
Even under normal conditions, caring for your children can be difficult; the problems of sickle cell anemia can further complicate matters for families. You and your child’s medical team will probably discuss daily or chronic care, preventive, and what to do in the event of an emergency while discussing your child’s care plans.

The most crucial thing you can do to avoid a medical emergency is to plan ahead. Discussing care options and their implications for your kid and family with the medical team is a good idea.
Communicate your goals and plans for management to every healthcare provider that is engaged in your child’s care.
To aid you and medical personnel in an emergency, keep a notebook or folder with your current treatment plans and critical care decisions.
SMA professionals concur that it is frequently best to enlist the assistance of numerous specialists and primary care physicians while providing care for children with SMA. Parents are important members of this team, and they are invited to get involved as much as they can. Although they are merely suggestions, the advice provided in this Family Guide is based on guidelines created specifically for physicians and other healthcare professionals. The best people to determine what is appropriate for your child with SMA are you and your medical team. For any queries you may have regarding the consensus guidelines or how to care for your kid, please get in touch with your doctor.