Whenever Alexandra Metelkina puts her daughter to bed in the evening, she ponders: when Anya wakes up - in the morning, Two days later, In a week? And one more thing: will you have to go back to the hospital or will it be possible to survive the "hibernation" at home? There are no answers to these questions.
She is healthy
Anyuta diligently writes kalyaks-malyaks in my notebook. Then he runs to the toy box and shows his treasures one by one. “My daughter is very sociable, she is used to adults - more than a year there are doctors and nurses around us,” says the girl's dad Maxim. - Only when we turn Anya to them, whine: understands that they will give an injection.
At the age of seven, Anya is an extremely lively child. Likes to play, look at pictures in books, swing on a swing. The energy in her boils especially violently after waking up from a long sleep. “Today Anya woke up after a two-day sleep, but this time she didn't have to go to the hospital,” Sasha explains.
Anya was five months old when she suddenly "fell asleep badly." She was lying, playing and suddenly closed her eyes, turned pale, limp. Then Maxim was at home with her. He immediately realized that something was wrong:
“Firstly, my daughter fell asleep at the wrong time, not according to the schedule. Secondly, she rarely breathed heavily. And the heartbeat slowed down. I called my wife, and when she came running, we called an ambulance. We were immediately taken to the hospital. Anya was admitted to the intensive care unit, then another one, without her mother."
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Anya slept in the hospital for two days. Doctors have put forward several versions: encephalopathy, meningitis, epilepsy. The baby was examined, but none of the alleged diagnoses was confirmed. “In general, she is healthy,” the doctors made a helpless gesture and discharged Anya Metelkina home. And three days later, the girl fell asleep again, a savory dream. Again the hospital, examinations, tests. Again, no certainty.
During the third "hibernation", the Metelkins were admitted to the Sverdlovsk Regional Children's Hospital No. 1.
“My daughter was given anticonvulsant therapy there, because it was assumed that this is how latent convulsions appear,” says Alexandra. - But there was no effect. And examined, of course, seriously. Again, no pathologies were found. It is interesting that when we were being prepared for discharge, Anya again felt worse. She again "fell asleep badly." And so it was repeated several times. As soon as they bring the discharge slip, she falls asleep."
Ural doctors sent a mysterious patient to the Moscow Russian National Research Medical University named after Pirogov. His specialists had to check the next preliminary diagnosis - "mitochondrial encephalopathy". The genetic abnormality was not confirmed.
Will it pass by itself?
For a little more than a year, Anya Metelkina has been under the close scrutiny of Russian and foreign doctors (the results of numerous examinations of the girl were studied by German doctors). But until now no one can explain what is happening with the Ural "sleeping beauty".
“Doctors are at a loss. We are told: “Maybe it will pass by itself someday”, “perhaps we are looking in the wrong place,” “apparently, we need to look at another time, from a different angle,” Alexandra enumerates. - One of these days we again go to the regional hospital, we will do MRI again. Maybe something will show up this time. We, of course, have already wept for ours. We can say they got used to the state of our daughter. We know what, when and how to do it. But I really want certainty."
Doctors also examined the parents, but did not reveal any genetic abnormalities or mental disorders. Laboratory studies were also carried out in the Metelkin's apartment - they took water samples, the air was checked for a radioactive background. Everything turned out to be normal.
Recently, the Metolkins have a new hope. The family was contacted by specialists from Stanford University. They wrote that Anya is of scientific interest to them, and offered a free examination.
Every evening, putting their daughter to bed, Sasha and Maxim do not know when she will wake up. The girl does not give any tips to her parents. As there is no algorithm for her unhealthy sleep attacks. Now they only take their daughter to the hospital if the heart rate drops below 70.
“Anya sleeps soundly during seizures, which last from a day to a week,” says Alexandra. - I wake up to feed her, she opens her eyes, but does not wake up fully. True, he eats a little, like a sparrow. After waking up, her temperature rises for a while. If she sleeps for a long time, then she can stay awake for up to a day and a half.
Many people write to us, tell us about similar cases. But only similar ones. No one has a long sleep with the same symptoms as Anya's. We have already tried many diets. Meat, products with gluten were excluded from Anya's diet … There is no effect."
Psychics and all sorts of healers are actively swarming around the Metolkins. One "omnipotent magician" from France asked to send him the girl's cut hair and nails for the ceremony. “I wouldn't send mine either,” says Sasha, “and even more so a child. It's scary to communicate with such people."
Little Anyutka does not yet understand that she has asked the doctors a tricky riddle. The girl's parents believe that someday (they are patient!) Doctors will solve her. The Metolkins live by this faith.
Rada Bozhenko
