“Biological treatment successfully affects children with juvenile idiopathic arthritis! Although rare, this disease is significant because it affects the entire childhood of a child", said in an interview with "Doctor" Assoc. Dr. Stefan Stefanov - Head of the Clinic of Rheumatology, Cardiology and Hematology of the SBAL for Children's Diseases. Prof. Dr. Ivan Mitev" in Sofia. Prof. Stefanov is a specialist in pediatric diseases and pediatric rheumatology, specialized in pediatric rheumatology in Finland, Germany and Italy, and is proficient in joint ultrasound. He is a member of the Bulgarian Pediatric Association, the Scientific Society of Rheumatology, the Bulgarian Medical Society for Osteoporosis and Osteoarthritis, the World Organization of Pediatric Rheumatologists PRINTO, and the "Rheumatic Child" association
Prof. Stefanov, in the summer, the first Center in Bulgaria for supplementary care for children with rheumatic diseases and their parents was opened in your hospital. What is the main purpose of this center, did it work actively?
- In principle, such centers are first opened where there are chronically ill children. Second, since these children have some problems in one way or another, it is good to solve them in a different environment. Not in a hospital setting, but with the participation and help of psychologists, pedagogues, teachers, artists, artists. Thus, in some form, their attention can be engaged, they can be included in the normal environment, so that they do not feel isolated from other children. You know that very often chronic suffering results in limiting children. It not only aggravates the disease, but also prevents normal contact with other children. In addition, these children cannot always engage in some kind of game with their peers. Since his knee hurts and his ankles are swollen, the child cannot kick a ball with the other children outside, cannot ride a bicycle, i.e.well, it has limitations.
Assoc. Dr. Stefan Stefanov
And this is exactly the main purpose of these centers. For the children to enter a friendly, cheerful, nice, out-of-hospital atmosphere, and also for their parents to be able to contact each other at these meetings. As I said, they are occupied by psychologists, pedagogues, teachers, artists, and in addition to engaging their attention, they help them to cope with certain actions more easily. For example, children with pain in the knees or in the wrists to learn to draw in the right way. Pure and simple, a form of diversity, of contact. A place where parents can meet, exchange information with each other, contact a doctor again in an outpatient setting, ask their questions. At these meetings, the doctor is generally without an apron, which alienates people anyway. That's the point.
Such centers have also existed in the West for a long time, and they are very often created at the initiative of patient organizations. It is the same in our case. The Adult Rheumatoid Arthritis and Ankylosing spondylitis Society helped build this center. An initiative was even launched to include children with other diseases. In the case of our center, for example, we also work with children with autoimmune chronic intestinal diseases. Some of them also have joint diseases, others only in the field of gastroenterology. After all, these are a group of patients for whom it is favorable and useful to have such activities. The last one was on October 28 with the participation of actress Stefania Koleva.
Are there statistics on the number of small patients with rheumatoid arthritis?
- For some countries there are statistics, for others there is no, the frequency is different, but on average statistically - one in 1000 children suffers from juvenile idiopathic arthritis. The incidence is greater in children who have reactive, transient arthritis due to viral or bacterial infections
In general, the number of patients is maintained over time. We have not observed an increased frequency or a decrease in the number of patients. And we in our clinic, monitoring the frequency, have direct observations in this direction, although I cannot give exact statistics. Taking into account that we cover almost 95% of the country's territory, because patients from the countryside also come to us. There was an old study by our teacher Prof. Boykinov, back in 1984-85, according to which somewhere around 700 children then suffered from this disease, which more or less corresponds to the frequency I mentioned to you above. In one sentence, it is a rare disease.
We have children from 2-3 years old to 18 years old. They go through life with the pains, with the limitations. Some change structurally - certain joint deformities, short stature. And this to some extent alienates them from other children. They have a sense of inferiority. Therefore, we try to help these groups of patients in some way. To feel engaged, including with computer games or various other activities - if there is no one to show them at home, to learn them with us. At the time, there were sanatoriums, where the so-called occupational therapy. This is how the children learned to handle the appropriate tool in the right way. Or if they have difficulties in the wrist, in the fingers, in the elbows, to learn how to turn on the light, how to turn the faucet on the sink. Here are such seemingly small things, but important for these children.
Prof. Stefanov, let's recall the main and characteristic features of rheumatoid arthritis in children?
- Yes, we have discussed this topic. Juvenile idiopathic arthritis is a collective term for many forms of arthritis with different causes, with different course and different evolution over time. They are distinguished according to the number of affected, diseased joints. At the so-called systemic form arthritis proceeds with very high fever and rash, in the polyarthritic form more than 5 joints are damaged
In the next form, less than five joints are damaged - from one to four. In addition to these basic forms, there are also several others - enteritis or related arthritis, psoriatic arthritis, etc. I want to remind you that some forms are treated more easily, others for a longer time. It is important to know that only polyarthritis and positive rheumatoid factor are called childhood rheumatoid arthritis.
And what are the main risk factors for the occurrence of the disease?
- We specialists call the causes multifactorial. Basically, rheumatology develops mainly in two directions. One is to look for the causes, the second direction is the treatment itself. I would like to point out that regarding treatment, things have progressed quite a bit. It is now believed that about 18-20% of children with juvenile idiopathic arthritis have a genetic factor. In the remaining cases, we are still talking about multifactorial causes - infections that cause these arthritis, environmental factors, epigenetics, etc. In recent years, attention has been paid to the condition of the natural barrier. In the sense - in what state is the organism, more specifically - the microflora in the intestines, the so-called microbiota. Because it is found that children with such arthritis have an altered microbiota, and perhaps this is one of the reasons why the pathogenic organism can cross this barrier and cause the arthritis.
And this, in turn, probably makes it possible to search for new therapies?
- Yes, new ways and methods are being sought to influence the disease. He even tries to influence himself through appropriate diets and other methods. There is research that shows they don't always help, but that's another direction. Because knowing the cause makes it easier to treat a chronic condition - whether it's arthritis, whether it's an intestinal infection, whether it's another autoimmune disease. Things are moving complexly in this direction.
Can the parents suspect that the child has such a problem by any signs?
- Any change in condition should sharpen the attention of parents. In joint diseases, it is limping, pain, refusal of a certain movement.
The eyes are also affected and if there are no external manifestations, such as red eyes or conjunctivitis, the child watches television closely, or holds the book closer to the eyes, etc.n., - these are all symptoms that can direct the parent that something is going on with this child. Joint and eye involvement - these are the two main affected organs in these diseases. In younger children, a large percentage also affects the eyes.
How does juvenile rheumatoid arthritis progress? What is the clinical picture?
- The disease usually begins acutely. When 3-4-5 joints are affected, the child suddenly becomes ill. He begins to limp, spares the affected limb, and very quickly the parents go to the doctor. Moreover, the doctor immediately orients himself and directs him to the narrow specialist. It is more difficult to diagnose those who have one joint or some small joint affected.
In these cases, the symptoms are rarer: today his leg hurts, after two weeks again, after three again. These kind of fleeting states, because of which the parent misses the moment. He explains it this way: today the child ran, jumped, something was wrong. Or he tells himself - it's probably growing pains. The third time he thinks something else. But if parents are observant enough and see that these episodes are becoming more frequent - this is already an alarming moment to visit a doctor and explain the child's condition. - What about the modern methods and means of treatment of juvenile idiopathic arthritis? - First of all I want to say that patients and their parents should not be afraid of the treatment. Chronic illness is the greater danger because it leads to limb deformities, changes in the body proportions of the spine, limbs, and internal organs. And, of course, the sooner treatment is started, the better. I want to point out that the cases that in the past were not affected and were not treated, for them there is now the so-called biological treatment, which is started for certain indications - they are in line with global recommendations. They have been drawn up and laid down in the regulations of the NHIF, both medical and financial criteria are respected. This treatment is quite successful and affects exactly this disability in children that we are talking about.
Do all affected children have access to such treatment?
- Yes, whoever needs it has access. As in our clinic and in general in my practice with colleagues from other cities, there is no moment of delay or refusal. The he alth fund has never refused such treatment to a child.
What is the reason that an infection triggers reactive arthritis in one case and chronic arthritis in the other?
- In general, the main criterion for whether arthritis will become chronic or not is the body's response to non-steroidal anti-inflammatory drugs such as voltaren, ibuprofen - the drugs that treat arthritis. If they respond well and quickly - yes, this is reactive arthritis of a past infection. While in other children this same infection unlocks the chronicity of the disease. Which means that there are clearly additional factors - some of them genetic or other. It is these factors that cause the same infection in one child to be transient and chronic in others. And right here I want to warn not to believe too much of what is written on the Internet. It is normal, it is desirable, it is mandatory that parents consult specifically for each case, because each disease in each person proceeds in an individual way. Therefore, in recent times there is talk and emphasis not only on treatment of the disease, but on personalized, individual treatment - with consideration of each patient in terms of risk factors, etiology, cause. And from there - changing the treatment schemes depending on the patient's characteristics.
Prof. Stefanov, can we talk about the prevention of children's rheumatological diseases, in general? Or it depends on many factors?
- In general, yes. Here is an example: the cause of the rheumatic disease, rheumatism, as we usually call it, is the so-called beta-hemolytic streptococcus. In the past, it affected 100 to 300 per 100,000 children. Currently, this percentage is below 0.5. That is, there is not one child per 100,000. Which means that many factors have changed this rate - better diagnosis of upper respiratory tract infections, appropriate timely therapy and treatment with penicillin antibiotics. Perhaps the improved he alth culture of the people, the improved living conditions - all these are still preventive factors. That is, prevention is of great importance.
In conclusion, what recommendations would you give to parents, if at all?
- When you notice that something is bothering your child, consult a specialist. That's what doctors are for. In remission, it is recommended to avoid risk factors, such as trauma, as far as possible to protect children. In this sense - use of protective equipment during sports. Of course, suitable sports that are accompanied by fewer risks - swimming, for example, cycling, maybe tennis, but more moderately. Basketball and volleyball, for example, are high-risk because they involve a lot of strain on joints and trauma. But in this regard, everything depends on the degree of sports and the stage of the disease. When the child is he althy and not in the process of exacerbation, there is no problem in being physically active. And last but not least, the diet should be controlled, but at the same time it should be full and varied. It is desirable to maintain an optimal weight, because excess leads to immobility and increased blood pressure - these factors are not favorable for the disease.
Complications
Sometimes, despite the new drugs, there are complications. They don't work 100%. And in very severe disease states, complications can occur where medicine is really powerless. It is not always possible to help, but it is still possible to partially influence the disease. 70 years ago, children with juvenile idiopathic arthritis had much more frequent eye involvement. 15 to 20% of them went completely blind, now this percentage is only 0.2. Not in all cases, but maximally affected by the disease
The more favorable diagnosis
“Reactive arthritis is the best diagnosis for both the doctor and the patient. Of course, it is better not to have it, but this is a disease about which we say "the disease licks the joints". In the sense, there is disease, there is swelling, there is limping, there are complaints of the child, but when we treat it for a few days or weeks, the arthritis passes without permanently damaging the joint, the tendons, the ligaments, the foot, the limbs of the child. This is a reaction of these joints. It starts abruptly and suddenly, I will repeat myself again - the symptoms are pain, swelling of the joints, lameness, but they pass quickly. I will use a metaphor again, we say: reactive arthritis is a "joint cold", i.e., it does not leave permanent lesions, does not lead to erosion and destruction of cartilage, does not lead to bone and structural abnormalities. Nor to distortion of the legs, as often happens with other chronic and long-lasting arthritis", explained the specialist.
Reactive arthritis is treated with anti-inflammatory drugs. Treatment of the underlying disease that triggered the arthritis is needed. That is, if the child had a viral or bacterial infection that has passed and gone, then the treatment with pain relievers and anti-inflammatories is resorted to. There are also local procedures - one of them, for example, is cooling the joint.
One of the first signs of the disease in the youngest children is a refusal to move, since the lower limbs are more often damaged and the upper ones less often. In addition, "limping" in babies means that they are very careful with one leg, that is, they do not include it in the movement, as if they are sparing it. They also change their gait - either when running or when walking. They experience morning stiffness and pain. And if, against the background of this typical sign, edema appears in some place, swelling of the joint, then there is almost no doubt that it is arthritis. In addition to being swollen, the joint is also warmer to the touch. It is not excluded that these signs and symptoms are accompanied by temperature, as well as redness in this place. I want to note one more thing - in the youngest children - the babies, the disease is manifested by the fact that they scream loudly when the diaper is put on them, which means that they feel pain in one leg.
