Official medical protocols determine the course of treatment for different diseases. Following such protocols does not always lead to results that satisfy the patients. The problem is much worse in cases where the disease is extremely rare making the disease officially untreatable. It was one of these diseases that initially set me on the path that I am on now. My first son, Gabor was born in 2002.
They did not identify any development problems at birth or later on. The only indicator that he differed from others was that he continuously cried, only taking eventual small pauses.
We can only remember a single smile from him when he was only a few days old, no more smiles occurred for a very long time after that day. The crying carried on for months and years without concerns to the time of day. The days blended into the nights. We observed physical developments but also noticed smaller coordination problems. Gabor did not talk and he hardly understood anything, he was also unable to walk whilst we helped with holding his hands. He did not understand. He did not differentiate between friends, parents, family members or strangers. He was unable to hold and use cutlery or his baby bottle. He dropped everything from his hands. But we were hopeful that nothing was wrong.
At this time we lived in Munich, Germany. I regularly took Gabor to the playground to play on the swings. I always lifted him into the seat and pushed him from the other side until he was holding on. At one time he stood next to the seat of the swing and wanted to get onto it. At first I was really happy that he lifted his leg to tried to climb into the seat by himself, which before had never occurred. Within seconds I lost all hope as he lifted his right leg to the right hand side but the seat of the swing was to his left hand side. His behaviour indicated dramatic coordination problems within all aspects of life.
The outbursts of crying did not fade and we spent a lot of time in hospital where usually they did not find anything unusual with Gabor.
They just gave stronger and stronger painkillers. Our paediatric doctor said everything was ok, this occured all the way until Gabor was two years old, he kept our hopes up. Gabor was regularly ill with infectious diseases which he received antibiotics for, the antibiotics pretty much completely destroyed his intestinal mucosa and due to his scars his plans which seemed unexplainable continued to get worse. When he was two years old we reached a point where we needed to see at least the smallest form of communication from him for us to continue to believe our pediatric doctor. Since not even the smallest attempt of communication was observable our doctors told us that there is probably a problem and that we should take Gabor to a thorough check.
We took him to one of the biggest paediatric hospitals in Germany. The checks consisted of multiple urine and blood tests through the day and genetic analysis. The genetic test showed a “positive results”. The 22nd chromosome’s long arm’s end was missing which is also called 22q13 deletion syndrome, this is one of the causes for autism. Of-course after the diagnosis we tried to find as much information as soon as we could on what awaited us and what were our possible treatment options. One of the less considerate responses of the geneticist upon hearing the diagnosis was “we cant sew it back”.
This meant; dont have too much hope, its incurable. However, Its almost impossible to just give in to complete hopelessness.
I started to systematically research the reason for the syndrome’s symptoms. Why isn't mental improvement possible?
Why do these children forget what they have already learned? Parents supporting each other have shared some of the symptoms and the results of their latest tests on the internet. Some children suffered from painful, spasm like crying outburst. For one of the children they have measured really high cortisone levels without any form of inflammation. The doctors and the partners were facing a mystery.
What can cause these symptoms?
During my research I found a Russian animal trial where rats were exposed for longs periods to a reduced water sources. The rat’s cortisone levels were sky high but their water hormone levels (vasopressin levels) dropped. This is exactly the opposite of the hormone changes experienced with acute thirst. From this we can make the conclusion that one of the reason for the pains these children were suffering from could be due to the fluctuation in the regulation of water-hormone levels in the hypothalamus. Sometimes water-hormone production could fall which amongst many things is accompanied by significant kidney pains. During the tests my son underwent, the doctors collected huge amounts of urine compared to his age, which later the endocrinologist said were compatible to the sypthoms of diabetes insipidus (vasopressin / water hormone deficiency). During my research I came across a study of a child born with the deletion of the 22q13 chromosome where they concluded that at the time of birth he was already suffering from diabetes insipidus. This helped to discover one of the causes of the symptoms of this disease. An unstable hypothalamus can lead to an unstable vasopressin production which can sometimes manifest itself in the form of diabetes insipidus. At least some portion of the pains can be traced back to this reason.
The survival time of patients mostly depends on the fact whether metastases form or not. Therefore, it’s extremely important to use apigenin besides medicinal mushroom extracts as the combined use of these two components is a well known method for treatment of cancers.Continue
However, the serious mental development problems can be traced back to different reasons.
During my research I studied the workings of the Shank 3 protein whose deletion is responsible for the majority of the mental problems for those suffering with the deletion of the 22q13 chromosome.
The Shank 3 proteins is linked to a receptor whose activation can positively influence the workings of the half protein synthesised. When I worked out how I can get the receptor activating materials into the brain without any side effects I showed my results to our doctor. The doctor was convinced by my research and agreed to the treatment. The treatment was so successful that within months another 5 children with the same problems also tried it also with successful results. One of the first signs for the effects of the treatment were my sons weight gain. Within weeks he went from being 12kg to 14-15kgs. His water balance became normal, the diabetes insipidus was cured, this resulted in his body filling up with 2-3 litres of water. This was the reason for the weight gain. Previously, Gabor’s body would only fill up with water for a few hours, until the externally given water hormone (Desmopressin) had an effect. Because of the treatment that I had developed his water balance continued to remained stable. His sodium levels due to his increased water levels went from the lower bound of the scale to the numerical optimum.
These were the first striking physiological signs that supported the efficiency of the treatment. For us however, the most striking thing was when he first understood a verbal information.
Previously we did not experience ay signs of this. He wasn't even able to understand when we pointed at thing, not to mention following our glance. If he went under the table he was unable to get out as he just tried to repeatedly stand up.
Cynthia was diagnosed with Chron's disease at the age of 7, right after her parents' divorce. The constant inflammation in her organism meant a very trying and difficult task for the little girl.Continue
He spent hours opening doors to keep himself entertained. After the treatment, on a lovely summers day we were at a traditional detached house’s back garden with Gabor. My son had his back to the front gate and we were facing it. Then we saw someone at the front gate and just said; “someone is standing at the gate”. My son got up from the floor and ran to the front gate. This was the most moving experience of our lives despite the fact that since then Gabor has managed to learn a lot of other words as well. Later on his repetitive behaviour got a lot better and became controllable, we were able to walk kilometres with him holding our hand. He learned to ride and control a 3 wheeled bike and not long after he mastered the two wheeled bike as well. Just as a side not I will say that he only learned to jump with both of his legs after the therapy. For his this wasn't a straightforward task.
Now he is drinking from a cup all by himself whilst before he was unable to concretely hold on to something and lift it to his mouth.
Up to my latest knowledge the therapy I developed is being clinically tested in Holland. Gabor’s genetic disorder had decreased his ability to fight off pathogens. The poor thing after a while had to live with compromised lungs. Unfortunately we were unable to use an inhaler as he had a panic attack from it. The antibiotics completely ruined his guts and digestive system and his skin was full of scars. This is when I started to use medical journals to find suitable tools against chronic bronchitis, asthma, and against general infectious diseases. I came across some medicinal mushroom extracts and medical herbs that I managed to stabilise my sons condition with. Upon seeing the successful results our paediatric doctor asked for the used recipe of ingredients. This was the turning point and I decided to make this treatment method to everyone. I continuously improved upon the quality and on the content of the pills to make them perfect. I made special recipes for some of the most extreme disease and this is where the spread of medicinal mushroom extracts in Hungary started.