There are quite a few books by experts and SMA advocates that help guide caregivers and through patients through the neuromuscular disorder. One of the top-rated books is the Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy, which was created to help the families of SMA patients.
Here, we’re focusing on some of the book’s key takeaways when it comes to caring for someone with SMA.
There are two broad option for a SMA diagnosis: your child either tested positive and is established to have SMA or tests negative. If they test negative (there’s a 5 percent chance of that happening), they’ll require more diagnostic tests. These tests can be anything from a electromyography study (EMG) to a nerve conduction study (NCS) to a muscle biopsy or various blood tests. If these tests come back positive, the patient will enter a second stage of diagnosis which will determine the severity and type of SMA. Generally, the earlier the weakness starts to present, the more severe the disease will be.
Breathing problems are the number one cause of death for children with the most serious types of SMA. Caregivers will need to learn how to clean an airway, which is important for all people with this disorder, but even more so for children. It’s a good idea for the child to see a specialist so they can assess their condition and provide parents and caregivers with the best option for breathing support to make both of your lives a bit safer and easier.
Handling eating and nutrition
Children with SMA, especially those affected by the two most serious types of the disorder, have a very tough time when it come to nutrition and gaining or maintaining weight. This is mostly due to the fact that swallowing is both difficult and dangerous, as it can lead to other health problems like aspiration pneumonia. You may want to keep a journal or a chart to keep up with your child’s growth so you can discuss it with your healthcare team and form a nutritional plan.
Managing movement and daily activities
Muscle weakness is perhaps the most noticeable symptom in SMA, though it manifests differently in every patient. You’ll need to create a care plan to help your child manage weakness in key parts of their body that will affect their independence. To create this plan, you may want to enlist the help of a wide variety of experts, ranging from physical therapists to speech specialists. They can suggest a long list of helpful resources that your child will eventually need for support. Assistive devices like motorized wheelchairs and orthotics are some of the options you might want to consider moving forward.
Preparing for disease
Though you might be tired of hearing words like planning and preparing, it’s the most important advice you’ll receive, even if you get it over and over. Develop plans for medical emergencies, and when the emergency does happen make sure your healthcare team is aware you have a plan. Use a journal to note current treatment plans and healthcare decisions you’ve made or are thinking of making in the future. Plan, plan, plan and make sure your healthcare team is involved in that planning.