Learn to live with Duchenne muscular dystrophy
Most likely, you will know more about Duchenne muscular dystrophy than the doctors with whom you will have to communicate, and hardly any of them are familiar with the specifics of the daily life of a person with this disease. Therefore, your experience is extremely important, and you need to have information about your son's health condition and what he needs for his life. Feel free to tell your doctors about your experience.
Perhaps there is a pediatrician in your clinic who is ready to learn more about this rare disease and can solve some of the medical problems on the spot. Your local pediatrician must be familiar with the patient's Passport.
The doctor will monitor the child and prescribe supportive therapy. But it is important to understand that therapy is not just medicine: you need to follow a regime of activity and rest, perform physical exercises (stretching). It is difficult to follow these requirements without understanding their causes, especially when it is not evident that the child has any problems. But one of your goals is to help your son keep his ability to walk for as long as possible, so everything described below should become a part of your daily routine.
30% of boys with Duchenne muscular dystrophy may have delayed speech development, behavioral characteristics, and emotional manifestations. In the future, this may affect school education. Try as soon as possible to find specialists with whom your boy can overcome these problems.
You will need to have benefits and additional opportunities (for example, an additional day off at school) to purchase medications and technical rehabilitation equipment, to be examined and treated in medical institutions, to receive assistance on preferential terms. A registered disability status can significantly help with the solution of these issues.
You may also need legal support to protect your child's rights. And of course, you will need social support and psychological assistance: communicate with other parents, it is easier to be together.
In the global practice, there are standards of therapy for patients with Duchenne muscular dystrophy, which directly affect the quality and duration of life. They are improving as medical science develops, but there are basic things that need to be paid attention to by those who are close to the patient: family members, nannies, teachers. We talk about these things. Learn to live with Duchenne muscular dystrophy.
Medicated hormone therapy
Glucocorticosteroids (Prednisolone or Deflazacort) reduce muscle breakdown and help to prolong the ability to walk, hand function and respiratory musculature function, also they reduce the risk of scoliosis, cardiomyopathy.
Glucocorticosteroids can be prescribed only by a doctor. Only doctors can determine the dosage and medication regimen. Cancellation of drugs and interruptions in hormone therapy without consulting a doctor can be hazardous to health.
More often, hormone therapy is prescribed at the age of 3-4 years. Before you start receiving hormone therapy pay attention to the appetite: how many times a day the child eats, what the size of the portion is, what food he prefers. If he is overweight, consult a nutritionist.
Boys with Duchenne muscular dystrophy can have psychological characteristics, but at the same time hormone therapy can affect their behavior. To understand what is a side effect of the treatment and what is a characteristic of the child, take notice of it. If necessary, ask a psychologist.
Medicated heart therapy
Monitoring ECG, ultrasound of the heart and a cardiologist should be held at least 1 time per year. Possible cardiac problems of DMD are: a violation of a heart rate, increased blood pressure, cardiomyopathy.
Cardiac drugs are prescribed before complaints are appeared. In some cases, the cardiologist recommends the use of ACE inhibitors for the prevention of cardiomyopathy. Diuretics and beta-blockers may also be assigned for the prevention of heart failure.
You should better have a stethoscope and a mechanical tonometer with a kids cuff at home. Once you visit a cardiologist it is necessary to show the results of recent research to him. If you have a complaint, it is better to keep a diary of blood pressure and heart rate control within 3-5 days and then show it to the doctor.
It is important to remember that girls and women who are carriers of the mutation may have some violations of the heart. It is necessary for them to monitor the ECG and ultrasound of the heart, especially in adolescence, during pregnancy, after their forties or when complaints (syncope, palpitations, poor exercise tolerance, pain in the heart, and others.).
Basic nutritional supplements: Q10, L-Carnitine, green tea extract, omega-3 acids, etc. Vitamin D and calcium are prescribed to prevent osteoporosis.
Drugs with unproven efficacy: amino acids, antioxidants, dietary supplements, nootropics and cardiovascular drugs, when injected intramuscularly can damage the muscles. Anabolic Steroids (Oxandrolone, etc.) and Botulinum toxin A are contraindicated.
ARVI, diseases of the respiratory system
Once the child begins to attend kindergarten, school, or any other community, he gets sick more often, and this is a common situation. In most cases, it does not require special ARVI therapy. For children with Duchenne muscular dystrophy without respiratory disorders, prescription of antibiotics is not required. Frequent ARVI is not a sign of immunodeficiency and does not require prescription of immunomodulators. The impact of immunomodulators and immunostimulants for patients with Duchenne dystrophy while receiving glucocorticoids was not investigated, their use can be not safe for the child.
The use of inactivated vaccines against pneumococcus, haemophilus, influenza can reduce the frequency of ARVI. Remediation of centers of a chronic infections (especially upper respiratory tract — chronic adenoids, tonsillitis, sinusitis, etc.) can also reduce the frequency of ARVI.
Hormone therapy increases the sense of hunger (children can’t stand hunger well) and can lead to excess weight. High body weight is an additional load for the weak muscles and can badly affect the motor function. It is important to maintain normal weigh, and not overweight. Meals should be regular and varied, fasting and «fasting days» are contraindicated — during the hormone therapy it may lead to gastritis, and ulcer of stomach.
Meat and fish, steamed vegetables, fresh fruit, combined with cereals and whole wheat products should prevail in the diet. Find replacement for the products that contain carbohydrates and that conduce to rapid weight gain, such as soft drinks, fast food, juices, sweets, potatoes, etc. For additional sources of calcium increase the dairy products in the diet. Avoid excessive use of salt (foods such as pickles, salted fish, sausages, canned food, ready-made products), since steroids increase the water retention in the organism.
Games, some help around the house, and other motor tasks affect the development of intelligence. Of course, it is important for children to feel successful and show achievements to their peers. At the same time, the motor development of a boy with Duchenne muscular dystrophy has a number of features that need to be taken into account. Your son might need some help to realize his potential and find an area where he will be proud of himself.
Physical activity for boys with Duchenne muscular dystrophy is very important. It maintains the muscle function and provides prevention of contractures and scoliosis. Only during physical activity bones can absorb calcium. But heavy loads are contraindicated at any age. The boy must bear the strain in a submaximal mode (no shortness of breath, no pain in muscles).
Duchenne muscular dystrophy causes the muscles indurations and the development of contractures. To maintain the elasticity of muscles, at any age, run daily particular exercises and stretching complex. It is recommended to do stretching after a warm shower or bath. It is especially important to stretch the hamstrings, Achilles tendon, calf muscles and wrists.
For children it is quite boring — you should not expect that it will attract them by itself. Make it a part of the family routine, for example, do morning exercises together, which begin with a warm-up of joints, and end with stretching. You can also add stretching to any workout (because all athletes warm up before and stretch after the exercise, tell your son about it). In the evening, do a soft stretching with minimum pain. Intensive stretching should be done during the day.