Muscular dystrophy or MD is a genetic disorder that stops the body from producing enough proteins to develop the muscles and keep them healthy. This fault in the genetic structure slowly weakens the body as the person ages. It is really heartbreaking to hear a parent say, “My child has muscular dystrophy.” This medical condition can hit anyone anytime. Children who get diagnosed with MD immediately show symptoms like the inability to properly walk, sit straight, breathe normally, and other physical mechanisms. The weakening of the body parts may also result in other health concerns like troubles relaxing the muscles and muscle shrinking.
Diagnosis and examinations
The basic steps that an expert will conduct when diagnosing a child with the possibility of having muscular dystrophy are taking a physical examination, checking the family history of the patient, and asking for any problems that the child may be experiencing.
Aside from checking for symptoms through physical checkups and family background investigation, an expert may also conduct some actual tests to determine the type of MD that the patient has. The tests to be conducted may include taking blood samples to determine the levels of serum creatine kinase. This is an enzyme that the body releases in the bloodstream whenever the muscle fibers are broken down. When the level of serum creatine kinase increases, it only means that there is something serious destroying the muscles. Blood testing may also be conducted in order to check the DNA for any gene irregularities. Aside from blood testing, a muscle biopsy is also an option to find out more about the condition. In a muscle biopsy, a surgically removed muscle tissue is studied in detail under a microscope.
Caring for your child with muscular dystrophy
The ultimate cure for MD remains undiscovered, but experts are working hard to improve muscle and joint functions. These medical professionals are hoping that this action will slow the muscle deterioration down, which will allow the individual to live a normal everyday life. If any of your children are diagnosed with muscular dystrophy, a specific group of medical experts will be assigned to check your situation. The group will normally include a neurologist, orthopedist, physical therapist, cardiologist, dietician, pulmonologist, nurse, and social worker. All of these members are experts in their own field and will work together to rehabilitate the patient.
This medical condition cannot be reversed once its effects start to spread through the system of an individual. For children with this condition, they are expected to go through different phases of muscle deterioration, and that is why they have to also undergo different kinds of healing processes. For the early phases of treatment, children will be subjected to the basic procedures of physical therapy, bracing, and medication. As the treatment progresses, the methods of recovering patient changes. The doctors may use devices that can assist the patient in his or her movements. The actions may involve the following:
Undergoing physical therapy while the patient wears braces
Physical therapy involves moving the body parts with the help of a specialist. This serves as an exercise for the body parts that have become immobile due to muscle deterioration. Physical therapy will help keep the muscles in proper shape and lessen joint stiffness. Physical therapy is highly necessary to avoid further problems that MD might cause. If a joint or muscle remained inactive for a long time, a shortening might occur which can cause pain and worsen the condition. Having braces as support can greatly help your child do his or her motor functions easily and independently.
Use of motorized wheelchairs and scooters
Technology has helped a lot of people perform tasks quicker and easier. In the medical field, the use of motorized wheelchairs and scooters did a very good job of keeping a child with MD as close as possible to his or her normal way of life. MD greatly limits a person’s movement, and that is why assistive devices like the motorized wheelchair can be a big help, especially to kids.
Use of ventilator easier breathing
Children have less developed muscles as compared to adults. If your child gets diagnosed with muscular dystrophy, there is a high chance that he or she will have great difficulty in breathing. Muscular dystrophy affects the respiratory muscles which can give a child a hard time with coughing and breathing. If this happens, infections might occur and can only worsen the situation. The use of a ventilator is highly advisable for children with MD because it can help them breathe well and avoid further health problems.
Use of robotics to make the everyday task easier to perform
It may sound like something from a sci-fi movie, but this one is real. Robotics has done a great job of giving children with MD a chance to live normally, even if parts of their bodies are not functioning well anymore. A group of researchers from the University of Twente, together with robotics specialists, developed a robotic arm that can support the daily tasks of a patient.
The parent’s important role
Knowing that your child is diagnosed with MD can be very upsetting, but do not let the negative emotions put you down to misery. There are still many things that you can do as a parent, like being your child's emotional support, and it is you whom your child needs the most. It is the parents’ job to encourage their child to stay optimistic. You should work mutually with your kid with full honesty and openness. It is alright to seek help from each other, and there is no shame in doing it. You should also be the one to seek help from family members and friends if needed. Moreover, you should always make the child feel happy and forget about the difficulties brought about by MD. As a parent, you should spend enough quality time with your child to always keep him or her in high spirits. Playing simple house games and creating funny conversations are good examples of activities.
For parents with more than one child in the family, it also important to give the right amount of attention to all of your children. Ensure that everyone’s needs are fulfilled. A child’s education and schooling might also be affected negatively by MD. The ability to go to school normally is the first issue that children with MD experience. Next to that is the effect on the child’s self-esteem due to the possible social differences among other children. All of these drawbacks can drop the child’s focus, hope, and determination to live a normal life. This is the time that the children need their parents the most. Any other person cannot easily match the support and love coming from the parents. The complete cure for muscular dystrophy may not yet be at hand, but the best medicine that everyone has right now is love and support, which only parents can give.
The continuous search for the ultimate treatment
Although the complete cure is still in human hands, the researchers and experts are always on track to study and find out more about muscular dystrophy. The information that these researchers are studying can help a lot and bring the muscular dystrophy patients and their families closer to the complete answer they have been looking for a very long time.