When a child has a rare disease muscular dystrophy , how to adjust his mentality as a parent

Muscular dystrophy is a hereditary lesion and cannot be controlled, but after taking ** and drug control, it can maintain cardiopulmonary function, effectively prolong the life of patients, and make it close to their natural survival time. For example, facial, scapulohumeral muscular dystrophy, the survival time after ** is close to the natural life span of a normal person; Pseudohypertrophic muscular dystrophy can also prolong the patient's life, but not later; Myotonic muscular dystrophy can be shortened by nearly 10 years compared with normal people, because muscular dystrophy is mainly related to the heart, protect the heart, and the life span can be extended.

If a child has rare muscular dystrophy, how to adjust his mentality as a parent? This has to be adjusted, because this malnutrition, it's based on man and machine. Caused by a genetic mutation, he didn't say it was a genetic disease or something. To be faced. Cooperate with your doctor**.

Keep an optimistic attitude, because this is relatively controllable, and paying attention to your child's diet can still help him grow up healthily.

Patients with Parkinson's disease are prone to falls due to increased muscle tone, postural disorders, and easy to fall, so they need to be accompanied by their family members and pay attention to the safety of patients.

The child has a rare disease, muscular dystrophy, as a parent's mentality and adjustment, we must adjust the mentality, mainly to cure the child's disease.

DMD muscular dystrophy due to respiratory muscle weakness, or combined with cardiac involvement, patients will have contractures of the limbs, basic loss of mobility, often due to concomitant lung infection, pressure ulcers equal to death before the age of 20.

When a child is diagnosed with muscular dystrophy, the biggest concern for many parents is whether to tell their child the truth about the condition. How can this condition be explained? When parents tell their children about their illness and what may happen in the future, it will inevitably cause their children's psychological tolerance and mood swings.

Discussing this with your child is very worrying! But again, this is very important and necessary. First of all, parents must accept the fact of diagnosis, so that it is possible to talk to their children with confidence and correctness!

Muscular dystrophy is a rare disease with a low incidence and very few affected children. Therefore, after the child is suddenly diagnosed with muscular dystrophy in daily life, most parents cannot accept it. I can't bear it all at once!

In fact, people will encounter emotional and behavioral problems in the process of children's growth, and for muscular dystrophy patients and their families, in addition to having the same problems as normal people. Their problems are more from the stress associated with physical ailments (e.g., **expense?). Is it curable?

Does it work? Life after paralysis, wheelchair? etc.).

In fact, the question of how to have a child depends on the age of the child, and the important turning point is the age.

Because children at this age already have their own perceptions and opinions, they also care about what others think of them when they start school. Parents are more concerned about what the future will bring, while children are more concerned about what is in front of them and are not yet able to think about the future. There is also no need for parents to be clear about the future of the problem.

What the child asks, the parent only needs. What parents need to do is to let their child know that he is always listening to him and knows his worries: he is afraid of falling, afraid of being ridiculed by his classmates, afraid of making a fool of himself.

How parents can inform their children of poor muscle nourishment, daily psychological care is very important! I think this can be explained to the child slowly, this child and some of the principles of the pathogenesis of this disease, and then slowly the child will accept your respect for the world.

Muscular dystrophy is an autosomal dominant, recessive, and X-linked recessive genetic disorder, a group of inherited muscle degenerative disorders.

Patients mainly present with slowly progressive aggravation, symmetrical muscle weakness and muscle atrophy, generally without sensory impairment, at the same time, it can be accompanied by muscle fiber degeneration, necrosis and regeneration, severe atrophy patients will be accompanied by fat and hoof tissue hyperplasia.

We are all puzzled, why didn't our ancestors have this disease? If the child suffers from dystrophy, there are many reasons for this, and it may also be that when you were pregnant with a child, you were infected with some viruses, and various reasons.

Parents are very puzzled, why did the children with this disease suffer from muscular dystrophy because of their grandparents?

Actually, you're right.

Basically, there are several reasons.

1. The defective gene has existed in the female family for several generations, but no one knows about it, it may be that no man or child has this disease, or there may be people who have this disease several generations ago but do not know what the disease is under the medical conditions at that time.

2. When developing into a fetus, a new gene mutation occurs, and once he develops a genetic disease, even if the gene mutation is spontaneous, this mutation can be passed on to his offspring.

Parents are very puzzled, why don't their grandparents have this disease? The child turned out to be suffering from muscular dystrophy. There are a lot of illnesses now.

How many people don't have a disease? In this life. All cracks will appear.

The reason for the posthumous draft. Medical experts can't figure it out. The secret of Chaoyuan Xiao.

and why.

Many parents of muscular dystrophy children mistakenly believe that there is no hope for their children if they have this disease! The mistake is that you can only wait for death slowly, waiting for the child to slowly become unable to walk, run, or even paralyzed and bedridden.

Some children with muscular dystrophy do not have any abnormalities in the early stage, but they are only tested for high levels of creatine kinase and aminotransferase. Some muscular dystrophy children are accompanied by developmental delay, poor resistance, frequent colds and fevers, etc., many parents of muscular dystrophy children have heard that there is no way to get this disease, and don't try it randomly, so the child goes from no symptoms to slow walking difficulty and then to paralysis, just because others say no way. I also give up letting my child bear the pain alone, watching other children jump and jump, and my own child walking is a problem.

At the same time, parents should also pay attention to encouraging their children every day, communicate with their children in a timely manner, and relieve their psychological pressure!

As children grow up and see that they walk differently from other classmates, there is a big psychological gap, and they will also have a sense of inferiority. Parents should establish a correct attitude and communicate with their children in a timely manner.

Actually, everyone knows it very well! It's just that I don't dare to face it, this disease is very difficult to treat, and it is indeed very difficult. It's hard to treat, it's not that it can't be helped**.

At the moment when the patient decides, in fact, the doctor is also very stressed. Because it is not easy for every patient, there is a lot of hope for the doctor, and they also want to return to normal after taking the medicine, and at the same time, they are facing great financial and life pressure.

Pediatric muscular dystrophy can be used under the guidance of the doctor** or acupuncture**, if necessary, you can go to a regular hospital for ** training, which has a certain effect on alleviating muscular dystrophy, it is recommended that you can give the body a proper massage, which can promote blood circulation is conducive to the recovery of symptoms. Generally speaking, if the child has muscular dystrophy, you can eat more vitamin-rich foods, you can also eat more foods rich in trace elements, and you can eat some vegetables and fruits in daily life, please maintain a good attitude, which is conducive to recovery.

Patients with muscular dystrophy are prone to the risk of muscle atrophy, so parents should encourage children to do some physical exercises to promote blood circulation, but they must pay attention to moderate activity to avoid overwork of children, and parents of children can give their children some massage.