I am a doctor in the Department of Pediatric Rheumatology and Immunology, and I have been practicing medicine for more than 20 years and have treated countless children.
Rheumatic immune diseases are mostly chronic diseases, with repeated, incurable characteristics, can not be cured. The goal of treatment is mainly clinical remission, improve the quality of life of the child, and be able to live and learn like a normal child.
Therefore, many children need to come to me regularly for follow-up, and I have a lot of years of friendship.
Image source: Stand Cool Helo
Among these children, Xiaoyu (pseudonym) is the one I remember the most. In the nearly 10 years from the age of 9 to the age of 18, this child came to our place and lived in the hospital 38 times, enduring unimaginable pain and suffering.
Her decades of fighting the disease with her family have also touched our medical staff.
At the age of 9, Xiaoyu developed symptoms of recurrent blood in the stool, and her family took her all the way from her hometown in the northeast to seek medical treatment.
Finally, we went to the Rheumatology and Immunology Department of the Capital Children's Research Institute, where we were diagnosed with a rare rheumatic immune disease - childhood vasculitis - childhood Behcet disease.
Childhood Behcet's disease is a rheumatic immune system disease and is currently considered an autoinflammatory disease.
The patient's autoimmune problems "attack" the blood vessels throughout the body, causing inflammation of the blood vessels, resulting in a series of symptoms.
Xiao Yu's symptoms are repeated blood in the stool, which is actually caused by inflammation of the blood vessels in the gastrointestinal tract.
Ulceration of mucous membranes, rupture of blood vessels and bleeding, long-term diarrhea and chronic blood loss of the gastrointestinal tract make children's red blood cells drop to 1/3 of normal people, often pale, weak, palpitation and so on.
This means that the child, who should be crazy to play and run, is so weak that he struggles to go up to 2 floors.
In order to alleviate the child's condition, we have used almost all the medicines that can treat this disease several times.
With hormones, various immunosuppressants, and expensive biologics, the condition can be maintained relatively smoothly, but as soon as the treatment is interrupted or the hormone is reduced, intestinal bleeding begins again.
In order to reduce the number of ulcer bleeding that will suddenly occur at any time, Xiaoyu's diet also needs to be extremely light, and the tempting snacks and beautiful sweets have completely disappeared from the world of 9-year-olds.
Every time she watched other children eat snacks with relish, she could only swallow silently, thinking that when she could eat it herself.
But even if she and her family have lived very carefully, if they are not careful, they will still re-enact diarrhea, blood in the stool, and so on... But that's not the worst.
Behcet's disease in children is prone to recurrence, and the disease is currently controlled mainly by drugs until it is completely relieved.
Therefore, it is very important to visit the hospital regularly for follow-up examinations. After several years of treatment, the high cost of medical treatment also overwhelmed the family.
Xiaoyu's parents gave everything they could in order to treat her illness, her mother resigned, only her father worked alone, relying on the meager salary every month to support, and later she could only get a little money to go to Beijing once, and she could only make up money at home.
The child can not come to Beijing on time to see a doctor, the hometown hospital can not be treated, sometimes the blood in the stool is too serious and there is no money to review, the mother has no way but to increase the amount of hormones for the child to stop the bleeding.
Long-term large doses of hormones, so that children become short, fat and hairy, hormonal cataracts, vision has also declined, thoracic and lumbar spine also due to osteoporosis has multiple fractures.
From the age of 13, severe low back pain caused Xiaoyu to lie in bed for many years and could not move, and even the most basic sitting and standing became a luxury.
As her condition worsened, when she could not walk or even move, Xiaoyu needed her parents and two people to push a wheelchair to take her to Beijing to see a doctor.
Xiao Yu is in a wheelchair
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(Source: Courtesy of patients)
Every time Xiaoyu came to see us for medical treatment, my colleagues and I were anxious and sad in our hearts, and we wanted to do our best to help this child who fought tenaciously against the disease.
On the one hand, we find more channels to help children raise some treatment fees, apply for free biologics, and reduce the costs that can be reduced;
On the other hand, I have also been paying attention to finding the latest literature internationally and actively looking for the latest treatments.
In June 2018, as there was increasing evidence that intestinal microbiome was closely related to rheumatic immune diseases, fecal transplantation has been applied to rheumatic immune diseases such as inflammatory bowel disease.
Knowledge extension
Fecal bacteria transplantation: refers to the process of transplanting the functional flora in the feces of healthy people into the intestines of patients and rebuilding the intestinal flora with normal functions to treat diseases inside and outside the intestine.
I think this method may be helpful to Xiao Yu's condition, I learned that Professor Yang Yunsheng of the Department of Gastroenterology of Beijing 301 Hospital has a lot of research in this regard, so I asked him to come to our department to introduce the knowledge of intestinal microecology, and also took the child to consultation.
The results of the consultation were:
Although this treatment has not been carried out in children with Behcet's disease, there are precedents for treating other rheumatic immune diseases, so you can try it.
Through full communication with Xiaoyu's parents, the family also agreed to try.
After 2 fecal transplants, a miracle happened, the blood in the stool that had tormented the child for several years began to be controlled, and the medication was better than before, and the refractory rheumatic immune disease was finally controlled.
After Xiao Yu was discharged from the hospital that time, I finally breathed a sigh of relief, and I was very happy in my heart, and I felt that I had unloaded a thousand pounds of burden.
Although the doctor is very hard, often tired and unable to get up, it is these moments that make us full of blood and resurrection.
One day in July 2020, I was in the clinic as usual and walked in with a young girl, which I didn't recognize at first.
Later, when the child said that she was Xiaoyu, I jumped up from the chair in shock, hugged her carefully, and after repeated confirmation, I said excitedly:
Is it really you? You're finally on your feet, even prettier!
Xiaoyu has been thanking us for her healing and the care she has given her over the years, so that she can regain her life.
I also want to tell Xiaoyu that the illness has brought her countless sufferings, but it has also given her an incomparably brave and powerful heart.
The story of her victory over the disease will also encourage many children like her to persevere no matter how difficult it is, and bravely fight against the disease.
18-year-old excellent children, not only Gu Ailing, who won the gold medal at Stanford, but also Xiaoyu, who fought against the disease for 10 years and still remained strong and optimistic.
During her illness, although she could not go to school like other children, Xiaoyu still finished her middle and high school courses at home, prepared to take the college entrance examination, and learned to play the guitar, sometimes enjoying the happiness brought to her by music.
Xiao Yu told me happily:
"I used to be in a wheelchair and I was so envious of the birds in the sky, but now I can re-step on the earth and look up at the stars, like a dream!"
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