The diagnosis is cortical blindness. But, I’ll start with the main thing – we were lucky. We managed to identify daughter Margarita for treatment at the Research Institute of Child and Family Psychiatry, where we met with a real doctor – a real wizard. This event became in the family a happy harbinger of the recovery of a dear and beloved girl. Yes, fate turned out to be favorable to us. We met a person who returned peace and tranquility to our family, to our home. The name of this wizard is Dr. Rakhmanov. To him, I bow low to the waist.
Margarita is my youngest daughter. She was born, alas, thanks to delivery using vacuum extraction. And as a result, the child with the first breath of air was injured – a cephalohematoma of the 2nd degree of the left occipital part, on the Apgar scale 7/9. At the time of discharge from the hospital, this figure was already equal to 9/9… From the birth trauma, my daughter did not cope with the year of her life.
Therefore, behavior and development were rather difficult. The child behaved as if he were blind, despite the fact that 2 candidates of medical sciences – a regional ophthalmologist and a neuropathologist – examined only horizontal nystagmus and partial atrophy of the optic nerve fundus in his daughter. They thought that with a good lens, Margarita would be able to see well and develop normally …
This did not suit me. Mother’s heart, meanwhile, prompted that we were going to the wrong specialist doctors. That it is necessary to look for ways of more effective treatment, modern, that one cannot rely on a fraction of the case. If you miss the opportunity to open the normal conditions for the child to develop and enter life, you will lose time. Then the child will not forgive you for this, remaining disabled for the rest of his life. We rushed to look for the reasons for her disturbing behavior. Margarita’s analyzers did not work, she did not simultaneously perceive a number of vital signals: hearing, sight, taste, smell, tactile-skin contact.
When Margarita focused on seeing the world around her, she could not hear his signals. Or vice versa. If I heard, then I did not see. It was all scary for us, adults, relatives to observe. While eating, the girl’s taste and olfactory analyzers were turned on, but others were turned off. Rita rests her foot on the floor and controls her position on the chair. When walking, she clearly removed with her foot all objects in her path that allegedly prevented her from moving around the apartment or in another room. Wherever she went, she intuitively tried to “secure” her position as much as possible. Cups and glasses were moved away from the edge of the table so that she would not accidentally hook them. At some moments, the child behaved like a blind person, but nevertheless – a small constructor and puzzles scattered on the carpet lifted and assembled in a box without assistance …
At 6 months of age and later a year, during the next 3 neurosonographies and ECGs, we got a consultation with specialists – neonatologists from Germany. In addition to the recommendation for breathing exercises with the child (Rita breathed shallowly, not at full diaphragm) and the development of the cervical spine – by turning the head to the right and left as much as possible – we did not receive recommendations from German specialists.
During the consultation with the professor of ophthalmology, while examining Rita, a ruler “fell” from the table. The daughter picked up the fallen object with her eyes closed, determining its position by ear. But apart from the conclusion on the actions caused by the visual analyzers, nothing more was required of us to do. Rita caught the impulse in her cerebral cortex. Then we did not yet know and did not understand that this study cannot name the reason for the inactivity of the brain due to the fact that the received impulse is not deciphered.
In the center for orphan diseases and in the medical genetic center, my daughter was diagnosed as absolutely healthy. Not a single indicator for rare (orphan), metabolic and genetic diseases went beyond the normal range. And then we were recommended to do tests for terrible mutations of DNA genes – this is Rett syndrome and Angelman syndrome since, at a consultation with the leading geneticists of Ukraine, a professor, a doctor of medical sciences and two candidates, they saw these very rare genetic disorders in Margarita.
Without hesitation, but knowing about the political and military conflict between the two countries, I went to Russia. There, in Moscow, at the Institute of Molecular Genetics – the result of the most complex analysis was obtained in 3 weeks, and in Ukraine, it would be necessary to wait about five months. The DNA mutation test was sent to Berlin, and there was their turn. Wait for an answer. I did not want to wait and could not. The child had to be saved.
On the way to Moscow, we stopped for a consultation at the Medical Genetic Center in St. Petersburg, to Dr. Nadezhda Belonog, Ph.D. in Medicine and a renowned geneticist-neurologist. But even after a 2-hour consultation, she did not clarify anything new to me, repeating the earlier diagnosis – Autistic Spectrum Disorder with visual impairment.
At the same time, the doctor recommended stopping taking anticonvulsants. Along the way, I turned to the famous Fedorov Institute of St. Petersburg about a violation of the child’s vision receptors. However, here, too, we were told that with such a disorder of conduct and autistic stereotypes, they are not able to help us. The child is not in contact.
At the same time, doctors in St. Petersburg, Russia did not confirm two terrible diagnoses of Rett and Angelman, having made an analysis for the karyotype and an MRI of the brain, where everything turned out to be without structural changes. In Okhmatdet they told me then: do not worry, we have many children go without a diagnosis, you are not the first, you are not the last.
Having excluded all genetics and neurology, we went to the psychiatrists of Ukraine and Italy … We were consulted at the clinic at the Institute of Pediatrics, Obstetrics, and Gynecology of the National Academy of Medical Sciences of Ukraine with a neuropsychiatrist – where they diagnosed early childhood autism, at the consultation with the chief psychiatrist of Ukraine – we heard nothing new, except that after additional examination according to the protocols of the Ministry of Health of Ukraine – we were adjusted to the indicators, confirming autism and specific developmental disorders (grade 1).
At that time, my Margarita had already stopped talking and repeating words and letters. Further, starting from the fact that we have autism – we tried the DAN protocol from a specialist from Italy, Mr. Bari. He regularly visited Kyiv to examine and treat children with psychiatric diagnoses. A well-known foreign doctor, according to the protocol, fought against viruses with the help of dietary supplements, analysis for heavy metals, gluten-free and casein-free diet, chelation, and other drugs and methods, but there was no positive dynamics. The end results were not encouraging.
Meanwhile, Margarita more and more went into her world of abstract thinking, did not engage in game manipulations, did not reveal an allergic reaction to nootropics. The setting was terrible. At that time, not a single drug was suitable for us. We have already completed “courses” in Cerakson, Cerebrokurin, Cerebrolysin, Semax, Cortexin, Actovegin, Cerebrum Compositum. Immunoglobulin indices were off scale. On the immunogramm, the numbers jump like on a trampoline.
After taking several cycles of the listed drugs, on the basis of detailed test indicators, the attending physician I. A. Martsinkovsky – thank him very much for this – forbade the use of neurotherapy in Rita’s treatment with a stroke of the pen. Medicines of this group cannot be prescribed during the rehabilitation of Margarita.
I only dreamed of peace. At night, the daughter slept calmly, and during the day she did not sit quietly for a second. Spun like a whirligig. Besides, we have new sores. Rita was diagnosed with lazy bowel syndrome. She went to the toilet once every 5–7 days. Without an enema or glycerin suppository, the matter was not complete. Her body has experienced severe and unreasonable intoxication. Rita was tested for Toxicon, and she underwent 4 courses of pressure chambers. As they say, this was all we needed.
I saw some changes in my daughter’s behavior. When the brain was saturated with oxygen under pressure, its behavior changed for the better. Metabolic processes in the body then took place more intensively. At that time, having found the only deviation from the norm – herpes type 6 (and we additionally and repeatedly passed 58 tests), we found a doctor who ordered a batch of immunoglobulin for Margarita to prevent herpes addiction.
God then sent me the opportunity to get privately to the professor of child psychiatry Bulakhova Lydia Alexandrovna.
At that time, she was more than 80 years old, but this person talked with Margarita for 3.5 hours at home and in conclusion, said that there is a violation of visual perception and severe pathology. The professor did not find any autism, noting that the diagnosis made by her colleagues is nothing more than a tribute to fashion. Well then. Fashion is a phenomenon that is coming and just as it is leaving. All that was left was to hope for the best.
Naturally, the conclusion made me happy, but I decided to regularly check the presence of heavy metals and re-take tests for their presence, first with provocation, and then without it. Already the first analysis showed that neither in the blood, nor in the nails, nor in the hair of my daughter were found the indicators of the content of heavy metals exceeding the norm. To make sure of the favorable indicators, I took my daughter’s tests twice and at different times. So, after the conclusion of Dr. Bulakhova, we, as autistic, “jumped” from the biomed’s protocol. Well, the gluten-free diet has so far remained out of habit, or something.
At that moment, the “sores” and I got so bad that it was time to shout “guard”. I categorically did not allow myself to relax, I was treated as they say on the go. Doctors prescribed me a number of antidepressants. Meteorological dependence was strongest and in January 2017 I was admitted to the hospital for the first time in my life. I was twice punctured by the maxillary sinuses. The Head electroencephalogram showed epileptic syndrome. After the punctures, the headaches did not go away. Doctors twice performed MRIs of the head and cervicothoracic spine prescribed anti-epidemic drugs and discharged from the hospital home.
At that time, I had to quit my job. On my support and upbringing were the eldest son – a clever and excellent student, and a sick daughter. At that time, my husband and I had already parted for two years. It was in this position and condition, as they say, after going through 9 circles of hell, walking with our daughter in the children’s center in Obolon, Kyiv and jumping on a trampoline with her, we met the mother of a boy with developmental delay disorder and learned that there is a magician in the world who practices doctor, Professor Vagif Mamedovich Rakhmanov. We learned about the original method of treatment of Professor Rakhmanov, that he is an opponent of all official medicine, which tries to treat both ASD and DPD and autism with medications, or nootropics, or antipsychotics. In a word, we inhibit the development of our stereotypical special children.
It was too late, but then I decided to myself: if fate sends me such an opportunity, I cannot ignore the signal from above. We must try to try, try this opportunity, and all the others that may still be available. Having collected the last effort and money, we came to a consultation with Vagif Mammadovich Rakhmanov with several volumes of conclusions, epicrisis, and medical research that we have.
Going then, for the first time, to a meeting with the professor, I kept in my bag the Rispolept prescribed for my daughter. Unopened packaging. I had no idea that the medicine would remain intact in my bag. The result of a date with an extraordinary doctor. What I heard in a conversation at a consultation with Vagif Mammadovich made up all the “gears” in my head into a well-functioning mechanism, which he launched himself.
I Heard a Diagnosis – Cortical Blindness. For the first time in 5 and a half years, I realized that he was the only one who explained everything and put everything in its place. And the daughter’s behavior is so similar to an autistic disease, and the lack of speech, and the work of only one, the left hemisphere of the brain. He explained the reason why his daughter’s eyelids did not close when looking at a strong light source and at the Sun, complete disorientation on the street, walking only while holding the leader’s hand, inability to perceive the whole picture, but only its individual fragments.
When drawing, a girl cannot focus her gaze on her hand and paper, she has an incorrect metabolic metabolism and shallow breathing, the inability to saturate the body with oxygen in full, and much more. And most importantly, perhaps, not the perception of instructions, misunderstanding of the speech addressed to her … The professor then said that blindness cannot be cured and will not take us for treatment. They say it’s late. Time is wasted. It was necessary to turn to him for help much earlier when the child was barely three years old. And not later. My persistence, my tears touched the heart of the good doctor. He took Margarita for treatment.
We stayed for the first cycle. And already at the first meeting with the doctor, the result was, as they say, obvious. During the session, Margarita opened her eyes and began intensively looking for ways to escape from the “annoying” man in a white coat. So one treatment session passed, the second, the third … Then our allergy to animals disappeared, we could calmly put gloves on our hands on the street.
She liked the trick of turning the table lamp on and off. In the pool, I moved away from the instructor and dived myself, lay down on the water, and relaxed. It seems that the fear of heights has passed by itself. For the first time, I behaved calmly on the lift. The stool returned to normal up to once every 2 days, and not once every 5-7 days, as it was before. The speech addressed to her perceives normally and reacts correctly to questions. Draws with understanding. Meals have become more organized around regular meals and meals. We were shown the path to recovery and we confidently stomped on it.
Doctor Rakhmanov, I bow low to you for the faith with which you took up the most difficult and rarest case in your many years of practice, for the treatment of my daughter. Thank you for the hope that you have placed in our souls. You gave our family a chance to become happy and friendly.
My advice to those who are still on the path of searching. Never give up, never hesitate, don’t be discouraged, listen to your heart, train your brain, and ask yourself questions – always look for answers.
Our contact numbers:
+38050-321-21-38 Kislinskaya Natalia Nikolaevna,
+38067-310-00-08 Logovsky Alexander Vladimirovich,
Ivano-Frankivsk region, Ukraine