Masha almost 4 years. Her whole life is one big epileptic seizure. She does not have time to recover from one attack, as it overtakes the second. Through diet, analyses and studies the girl, you may be able to achieve remission, but in the MHI is only a small part of the necessary Mache treatment.
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“Don’t worry, mommy…”
They are talking, interrupting each other. Literally. First, says Vera, and Boris tells the details, then said Boris: “Wait, it is more logical’ll explain everything,” and Faith helps with the details. They are probably very afraid that I do not understand something, or miss, or not see what it is – their three year old Masha. How smart she is, what she’s fun, what music. And how much Mary is sick…
Met, married. Boris literary critic, teacher, Faith is also a teacher, a Director, conducts creative workshops at the rehabilitation centre for drug addicted Teens. They waited a long time for a child and then a daughter, Masha. Absolutely healthy. Rather, she was perfectly healthy exactly 4 hours after birth. Faith performed a caesarean section, showed the baby and took.
“Tonight I was waiting, waiting for Mary – when, finally, you see her?! – Vera says. – And me to the ward, came several pediatricians said catchphrase, which a heart attack may be enough: “don’t worry, mommy…””
Faith remembers how heart sank, but my head flashed a thousand thoughts, a thousand possible answers – from the worst tolerable to terrible. ““Don’t worry, the girl had an epileptic seizure, she’s in the ICU, under observation,” said the doctors. I said she’s alive, she’s around all the time, maybe attack – coincidence?” recalls Faith.
But after 10 days my daughter was a second epiprocta. And then they began to happen more and more often, and after 3 months was three times a day. Masha seemed to fall into the abyss: cessation of breathing, bluish face, covered by a spasm of the body and loss of consciousness. None of the doctors explain what is happening could not – the diagnosis was not.
“Nothing can be done”
First Faith, and Boris did not believe: what is epilepsy? Where? Mache made EEG, on which no epiactivity was not detected. Cost to finish the examination – attack. Purpose you can imagine. Then the epileptic lesion is still formed, but the nomadic – encephalogram “caught” him in one area Mashinnogo of the brain to another.
“It’s a dravet syndrome – a rare, untreatable form of epilepsy, said the Faith and Boris doctor in a clinic. After the hospital they constantly drove Mary to the doctor. – Nothing can be done”.
But Faith and Boris decided that “do nothing” they will have time whenever you want, and now it is necessary to try still to save Masha. They began to read articles on the Internet, to consult with other doctors. In the result, put Masha on a low-carb, gluten-free diet. And the incredible happened – Mary almost went into remission six months she had no seizures.
We watched with horror, but believe that it’s necessary
“Dravet syndrome, you say? Not treatable? Oh, no. We still wrestle…” – Faith and Boris began to “dig” further. Found a clinic in Togliatti, specializing in epilepsy and dietary nutrition in spasms – keto-diet.
We had been saving for a long time, – Boris tells, – I Postponed my salary, Verinoj. Finally, we have the necessary 180 thousand went to Togliatti. So much hope was…
– They have the slogan: “We know about epilepsy everything,” picks up Faith. Almost immediately Mary began to give potatoes, semolina, continues Boris.
We watched with horror, but believed that it should be. Maybe we don’t know something. Soon Masha has become worse, and a month later, the seizures returned. No, not just attacks – severe attacks.
It’s called “epileptic status” – a series of seizures without full recovery of consciousness between them. Approximately 10% of cases of epileptic status can result in death. But Mary survived, she just lost all skills, all learned in six months of remission.
– We started all over again – a strict diet: no gluten, nothing sweet, no starch, – said Boris. Masha wakes up very slowly. In August she will celebrate 4 years, but for the development it has not yet caught up with year-old baby.
– She understands a lot, but says very little: “mom”, “dad”, “Yes”, “no” – picks up Faith. – Barely crawl, mostly on their bellies, gets up on all fours with difficulty, standing on his feet, if only to keep.
That will cure talk
Recently in Moscow, Masha put a rough diagnosis, explaining epilepsy – autoimmune disease (a disease associated with dysfunction of the immune system) syndrome “leaky gut” or leaky gut syndrome.
This means that Masha may have damaged the intestines of the open holes, causing large molecules such as food proteins, bacteria and waste products can pass through these openings and cause damage to the body, including causing epilepsy.
The disease is treatable. Up to a full recovery. But it is necessary to confirm the diagnosis. You need to do a lot of expensive research and analysis, and kept up to EEG monitoring, to find diet and medication. In the MLA included a small part of the necessary Mache treatment and diagnostics, the rest for their money. Vera and Boris really ask for our help, the salary of teachers to save Masha impossible.
– Sometimes we say to each other: “Hey, let’s talk about something else, not about Mary”. Does not work – smiling Faith.
– That will cure and talk − picks up Boris.
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