06/03/2021
"Phenylketonuria - a disease treated by food
From the day you find out that your child is one of 80 in Serbia with this diagnosis, you need to be prepared for your family to be different from most thers.
I sat next to Mihajlo's bed in the hospital, watched him sleep and thought he was a healthy baby. I could not imagine what the future would look like with a child who has a disease called phenylketonuria, a PKU child. I was not sad that he would not be allowed to eat meat, eggs, white bread, but that he would not be able to choose for himself. He was so small, and life had already made a frame for him from which he would not be allowed to come out. Mihajlo's cry would startle me and remind me that I should react and think about what is happening now. Returning home meant inevitable acceptance.
Our son Mihajlo has phenylketonuria (PKU), a disease in which the body cannot break down the amino acid phenylalanine and phenylalanine accumulates in tissues and the nervous system. Thus, the nervous system collapses and numerous neurological disorders occur, from the impossibility for the child to start sitting, walking and talking to severe mental retardation.
Phenylalanine is one of the main ingredients of all proteins and a diet with very little or no phenylalanine is the only cure for this disease. Therefore, immediately after the diagnosis is confirmed, the baby is placed on a low-protein diet, which enables her to grow and develop properly. Diet is lifelong. The most basic food was provided at the expense of the State and was obtained at the hospital where the child is being monitored. These are low-protein flour from which I make bread, pizza, salty pastries and cakes, a substitute for powdered milk that is used both for drinking and as an ingredient for cooking, a substitute for eggs from which a special omelet is made, low-protein French toast and a protein supplement that needs to make up for all the ingredients from the food that our son is not allowed to eat, which are necessary for his proper growth and development.
We buy other low-protein foods through foreign sites (pasta substitute, rice, special meat substitute, salami, yogurt substitute, pate substitute, special sweets and snacks). The question we are most often asked is: "What does your son eat?" In addition to fruits and vegetables and the mentioned substitutes, with the inevitable love that is the main ingredient of every meal I prepare for him, our child has a rich diet.
He learned from the age of two which foods were allowed to him and which were strictly forbidden to him, and he never broke that rule. Only, like every child, when he finds himself in a store where he is attracted by colorful candy wrappers, he wants to try them. Then we look at the declarations on their packages together and think about how to fit the meal for that day into it’s six grams of protein that he can eat daily. That's how it is every day. Without the possibility of overgrowth, like an allergy.
He used to ask, "Why me, Mom?" My answers were tailored to his age. When he was three years old, I said that he had to eat only his own food so that he could play nicely, run, go to kindergarten. At the age of five, he said he was tired of eating only his own food. Then we introduced PKU day to our family. On that day we all eat the same food. Now, at the age of nine, he is asking whether scientists will invent a medicine that will enable him to eat food like the others. Since I know how important it is to believe in something, he has my support in it because he maturely and conscientiously accepts a different way of eating, as well as everything that this disease brings with it.
What he doesn't like is the regular monthly blood test, which we take out at home and send for analysis to Novi Sad. The level of phenylalanine is measured by the Guthrie test, and it is a routine control that detects whether the diet is carried out regularly. Although aware that we started the diet on time, I waited anxiously for Mihajlo's first steps. They happened on my birthday, when he was 15 months old. It turned out that he was afraid to let go of the handles from the table he was adhering to. I wished him then that he would never feel such fear again and that he would walk through life bravely and decisively. He started kindergarten at the age of three and with his set of dishes, with breakfast and lunch, but also with a great desire to socialize and acquire new knowledge. He went to children's birthdays with his piece of cake. The time when I finally relaxed and there was no longer any doubt whether everything was really okay was the period of Mihajlo's final year in kindergarten, when he was absent from the team for a long time because he had smallpox. During that time, he learned the alphabet by heart, and in the summer before going to school, he learned to read. He is now going to the third grade of elementary school and the second grade of primary music school, guitar department.
Accepting a child's diagnosis means being persistent, consistent, determined and constantly fighting. From the day you find out that your child is one of 80 in Serbia with this diagnosis, you need to be prepared for your family to be different from most thers.Doctors are on your side and are an important part of your child's life. They will guide you into a new way of life.
However, the parent is the one who knows his child best, his needs, desires and possibilities in a society that does not yet recognize the importance of complete support for this disease. What stands out as a priority is the inclusion of nutritionists in the treatment protocol, which is a long-standing practice in all European centers for monitoring phenylketonuria, which would give our children the complete care required by this disease.
Children learn from us. It's simple, if you want your child to be a fighter, you have to fight. If you want him to never give up, neither do you. Our son taught me to slow down sometimes, take a break, think, and only then take the momentum and move on. He taught me to rejoice and be grateful for everything I have.
Much of my gratitude goes to two greats: the German doctor Horst Bickel, who discovered that the only cure for phenylketonuria is a low-protein diet, and the American microbiologist Dr. Robert Guthrie, who discovered how phenylketonuria is diagnosed. According to him, the blood test is called the Guthrie test. Dr. Bickel and Dr. Guthrie's birthday is celebrated around the world as PKU Day, every June 28th.
In Serbia, one in every 10,000 babies is born with a diagnosis of phenylketonuria. The centers for monitoring phenylketonuria are the Institute for Health Protection of Children and Youth in Novi Sad and the Institute for Health Protection of Mother and Child "Dr Vukan Čupić" in Belgrade".
"Politika" March 4, 2021
