This story was told by Irina, Maxim's mother:
Maxim was born 19 August 2007 . A healthy and strong baby. Everything was in perfect order at the time, and we were discharged on due date. Maxim grew and developed according to his age, bringing joy to his parents. It was time for him to go to kindergarten. But we weren't very lucky with the kindergarten we — we went to the nursery just when the country was actively electing a new president, in connection, with which led to significant savings on all budget expenses, in including the quality of baby food. The headmistress did not warn parents about two-year-olds eating soups made from canned fish of dubious quality and eating them with porridge made with condensed milk made from palm oil.
As a result, after a couple of weeks of this diet, we straight after breakfast at kindergarten, we ended up in the infectious diseases hospital on Pasteur Street. «Acute intoxication Grade II severe» — then I couldn't even imagine what this would turn out to be. Two weeks of hell in the hospital — the child was burning up, his fever wouldn't be brought down by any injections, uncontrollable vomiting, severe dehydration (he lost 25% weight in a week and a half), a week of IVs — at 3 every day 3 hours each, for which he was tied to the bed, his arms punctured and a sea of tears, and then, when we finally got home, I noticed that the child had stopped saying new words.
Quite quickly, he lost the those he had before this (he spoke about 3 dozens of words). Problems arose with — his intestines, with increased intracranial pressure, with impaired cerebral blood flow, and with behavior. Maxim became nervous, hyperactive, and barely slept. And endless visits to doctors ensued, with a ton of tests, assumptions, and diagnoses. And every time we took new tests, did new examinations, but there were still no clear answers from the doctors, there were no they just shrugged their shoulders, sending us from office to office, from one clinic to another.
Along the way, we started training at the rehabilitation center named after Ya. Korczak — have been training there since today, in three years we have achieved a lot thanks to the center's specialists. Then we were referred to our fifth neurologist, — Valentina Stepanovna Busova. She was the first to suggest that our clinical picture didn't fit into any diagnosis, perhaps because it was a metabolic disorder, and referred us to geneticists. Since by Maxim was already almost 5 years old, and time was running out, we directly headed to Kharkiv, where the Ukrainian Genetics Department is located. At the Kharkiv Specialized Medical—Genetic Center, Maxim has been registered since July 2012 with Yulia Borisovna Grechanina. The child underwent a thorough and comprehensive examination, revealing serious folate cycle disorders. They said that he had a predisposition to this problem, and that severe stress was the trigger.
If it weren't for the poisoning, we could have never would have even known about this predisposition. Maxim was diagnosed with «metabolic disorders», a specific diet was created — with low methionine levels (we now calculate all foods according to special tables for methionine content), treatment was prescribed, and it was also recommended to have his immune system examined. Treatment at the KhSMGC also yielded positive results.
Next, we contacted Kharkiv Institute of Immunology and Allergology Mechnikov to Volyansky Andrey Yuryevich. The test results were shocking. — My immune system is severely weakened; it is not at all able to resist either viruses or bacteria, and those mercilessly attack the entire body, destroying it further every day. The diagnosis was supplemented with — «Chronic infection (HSV1, HSV2, EBV, CMV) exacerbation, leukoviremia, immune dysfunction (increased IgM, decreased IgA), increased heterophilic hemolysins, sensitization to bacterial antigens (Streptococcus sp.; Staph. areus), impaired neuropsychiatric development, folate cycle disorders, metabolic disease». A diagnostic 2 week-long treatment was prescribed, and hope was restored. — The teachers, speech therapists, and psychologists noted clear progress. — Sleep returned to normal, behavior improved, and the first drawings and first short words appeared. Finally, the first significant improvements, finally the right tactic!
But Unfortunately, we couldn't get by with chemotherapy alone. We were prescribed immunoglobulins by monthly intravenous infusions. And these are new risks: hospitalization for 10 days per month for the next six months, and of course, the high cost of treatment. We decided to undergo further examinations in Kyiv, at the Institute of Immunology and Allergology named after Bogomolets with Dmitry Valerievich Maltsev. Unfortunately, the diagnosis was confirmed there and refined (Isolated NKT cell deficiency (below the minimum norm for 400%) in the form of chronic HHV7 neuroinfection, PANDAS syndrome), for which is why the treatment prescribed is even more rigorous and severe.
Neuroimmunologists see only one solution — a powerful course of expensive medications: immunoglobulins, interferons, macrophage activators, and antivirals.
As of today, Maksimka's monthly treatment costs range from 11 000 to 18 000 UAH, and this is just the cost of the medications. And you also have to retake tests monthly in Kyiv and Kharkiv — immunology and metabolism, which are not done in Odesa and their cost also 2-2,5 thousands of hryvnias and expenses associated with the trips themselves.
Before this, we could manage on our own, but all the procedures for examinations, the cost of medications, and rehabilitation programs cost 7-8 thousand hryvnias per month, and we worked alone. I had to give up my job because Every month we travel to Kyiv and to Kharkiv for routine checkups, and now we also have to spend a third of the month in the hospital, and the cost of treatment has increased significantly.
By reducing all current expenses to a minimum and by abandoning a number of less important rehabilitation measures, we still won't be able to meet this payment schedule. And after all, treatment can't be interrupted — otherwise, resistance will develop and the chances will decrease even further. Today, thanks to some helpful people, we were able to purchase some medications significantly cheaper than they cost in pharmacies.
According to essentially, we only need one drug today — «Bioven Mono», but its minimum cost at pharmacy 710 UAH for a bottle, we need 15 pieces per month.
The total cost of the course, including discounts, was 75829,82 UAH.
We are forced to turn to caring people for help — we can no longer cope on our own. Help Maxim recover! Help him get rid of daily pain and talk! We with Maximushka will be grateful for help!
