Unsweetened life. What awaits parents after a child is diagnosed with diabetes
According to the latest data for 2018, about 9,000 children with diabetes were registered in Ukraine. Statistics are not comforting and the thought that our children are also at risk, causes us anxiety and fear. But what if your child has already been diagnosed?
Two experts Zoya Bova, who is the founder of the public organization "DiaLifeAct" and part-time mother of a child with diabetes, and Natalia Pogodaeva will help us to understand this issue., head of the endocrinology department at Okhmatdyt. Our experts will talk about methods of treating diabetes, how the life of a child and his family members is changing, as well as the situation with the free provision of drugs.
Zoe, first of all, tell your story about how you learned that your child has diabetes.
Once, my children and I decided to go to Budapest to visit the thermal springs. Six months earlier, we had the first vaccination, which the children had a hard time with, chickenpox, and an intestinal infection, which was also a hard time. It is difficult to say what provoked diabetes. They were still weak before the trip and on the 3rd day of our stay in Budapest I noticed that Dana was very weak, he started writing a lot and I even had to put diapers on him again, there was also the smell of acetone. And we had to call the doctors, they immediately did the test they had with them: a urine test for glucose and a finger test. Sugar was very high here and there. And we were immediately brought to the intensive care unit. Doctors there do not speak Russian or English, they only speak Hungarian. And I started to panic even more, because she did not understand what was happening. Then I was met by a doctor who spoke English and explained to me that the child’s blood sugar was 47 mol. The child was not yet in a coma, but in a pre-coma. When I heard this, I cried so much that the doctors even had to expel me from the ward.
At the time, I didn’t even know what type 1 diabetes was, for me, as for many, diabetes was associated with older, obese people who ate a lot of sweets. And I did not understand where this disease could appear in a child who is only 2.5 years old, I could not believe it. He was very thin, he had a terrible weakness, all 2 days he lay under the drip and on the 3rd day I even had to teach him to walk, he was so weak.
The doctors started giving me a lot of information, but it didn’t fit in my head.
What were your next steps after coming to Ukraine?
Upon arrival, we immediately went to bed in Okhmatdyt. From the first days I was shocked by the attitude of doctors. One day a nurse woke me up at 12 o’clock at night and said, “I can’t pierce your child’s finger. Mommy, get up and pierce to check the sugar. Then it made me think, why do we need this nurse then? The doctors had to teach me, and in fact, I had to do everything myself. And that’s when I realized how lucky we were to learn about diabetes in Budapest. After all, Hungary, despite the language barrier, gave me much more knowledge than 2 weeks in Okhmatdyt.
When I realized that I had to rely on my own strength, the first thing I did was try to find some information on the Internet on my own. That is, I already found the information, and then came and asked the doctors if it was really effective, etc. For example, pompom therapy was something unique 5 years ago, very few people knew about it, and only a few people had sugar monitoring. And I learned about these methods via the Internet. After all, then even social networks for communication were not widespread.
What treatment did the doctors prescribe for you?
Just inject insulin. They gave the book "First Steps with Diabetes" and registered for disability, and that’s it. But we were lucky again because my husband’s boss has a child with diabetes. And he, entering the situation, paid for our treatment in Israel, or to be more precise, we installed a pump.
Pump - a device designed for continuous subcutaneous injection of insulin.
There I went through a pretty good school, I was told how to feed, what lifestyle to lead, what regime is needed. Every day the doctors were in touch with me and any of my questions were substantiated and disclosed.
After returning to Ukraine, we continued to visit our district doctor, but when she saw the pump, she said that she did not understand the pumps and did not understand the monitoring. And our further visits to the doctor were only to get insulin, no more consultations and advice from the doctor. Doctors know absolutely nothing about modern methods, they do not even read about them. I do not blame doctors for this, they are not interested in it and the state does not give them motivation, because every work must be paid decently.
And what about free drugs?
During these 5 years of illness I received insulin, glucometer and only the last 2 years I received test strips. Before that we were not given anything. Argued that they simply do not exist.
For example, test strips. At the end of the year we were given 9 packages for an indefinite period. 50 pieces in each package. And the child must be sure to check the sugar before eating, and preferably after eating. Roughly speaking, we take 7 strips a day. So let’s calculate how much this package will be enough for us? Also, keep in mind that when a child is sick, it is sometimes necessary to check the sugar every hour. We were given six months, but they are enough for 2-3 months.
Zoya, please tell us about the situation with kindergartens? After all, children with diabetes are not always willing to accept?
That’s right, and we are no exception. We have formed a kind of vicious circle. The fact is that the child needs injections. According to the instructions, the kindergarten teacher must be able to make injections, but at the same time, she is not obliged to do so. There must also be a nurse in the kindergarten, but in fact, she does not always have to be there, she can work at certain hours. Of course, working with a child in kindergarten or school requires constant monitoring, and it can not be that the nurse came and went when she wanted. If the child is not yet trained and cannot test the sugar himself, someone should give him an injection. In theory, a nurse, but no nurse. Then you come to the teacher, but the teacher does not want to take responsibility. That is what to do? There is only an individual curriculum in school and kindergarten.
And how did you get out of this situation?
We went to a private kindergarten and then to a private school. There is usually a more loyal attitude. We were denied many clubs. Everyone was afraid to take responsibility and asked the same question: "What should we do if your child becomes ill?"
Give some advice to moms who, like you, have faced the same difficulties?
First, you need to find a very good endocrinologist who will teach you the rules of nutrition and will give advice. Secondly, you need to seek support from the same mothers, because they, like no one else, will understand you and your problems. And third, come to our organization. We have endocrinologists, psychologists who can give you a lot of knowledge. There are our groups, where we share useful recipes for our children, there is a group of psychological support, there is a group of sales of gadgets, joint purchases and advice, we always communicate and support each other.
Ufund has a program to help children with severe type 1 diabetes. Until recently, your donations were used to buy insulin pumps and consumables. The state does not guarantee the purchase of pumps and consumables from the budget. Therefore, we continue the program "Fund. Diabetes". You can help hundreds of children better control their sugar and delay or avoid serious complications such as kidney disease, blindness, heart attacks and strokes.
DONATION
Two experts Zoya Bova, who is the founder of the public organization "DiaLifeAct" and part-time mother of a child with diabetes, and Natalia Pogodaeva will help us to understand this issue., head of the endocrinology department at Okhmatdyt. Our experts will talk about methods of treating diabetes, how the life of a child and his family members is changing, as well as the situation with the free provision of drugs.
Zoe, first of all, tell your story about how you learned that your child has diabetes.
Once, my children and I decided to go to Budapest to visit the thermal springs. Six months earlier, we had the first vaccination, which the children had a hard time with, chickenpox, and an intestinal infection, which was also a hard time. It is difficult to say what provoked diabetes. They were still weak before the trip and on the 3rd day of our stay in Budapest I noticed that Dana was very weak, he started writing a lot and I even had to put diapers on him again, there was also the smell of acetone. And we had to call the doctors, they immediately did the test they had with them: a urine test for glucose and a finger test. Sugar was very high here and there. And we were immediately brought to the intensive care unit. Doctors there do not speak Russian or English, they only speak Hungarian. And I started to panic even more, because she did not understand what was happening. Then I was met by a doctor who spoke English and explained to me that the child’s blood sugar was 47 mol. The child was not yet in a coma, but in a pre-coma. When I heard this, I cried so much that the doctors even had to expel me from the ward.
At the time, I didn’t even know what type 1 diabetes was, for me, as for many, diabetes was associated with older, obese people who ate a lot of sweets. And I did not understand where this disease could appear in a child who is only 2.5 years old, I could not believe it. He was very thin, he had a terrible weakness, all 2 days he lay under the drip and on the 3rd day I even had to teach him to walk, he was so weak. The doctors started giving me a lot of information, but it didn’t fit in my head.
What were your next steps after coming to Ukraine?
Upon arrival, we immediately went to bed in Okhmatdyt. From the first days I was shocked by the attitude of doctors. One day a nurse woke me up at 12 o’clock at night and said, “I can’t pierce your child’s finger. Mommy, get up and pierce to check the sugar. Then it made me think, why do we need this nurse then? The doctors had to teach me, and in fact, I had to do everything myself. And that’s when I realized how lucky we were to learn about diabetes in Budapest. After all, Hungary, despite the language barrier, gave me much more knowledge than 2 weeks in Okhmatdyt.
When I realized that I had to rely on my own strength, the first thing I did was try to find some information on the Internet on my own. That is, I already found the information, and then came and asked the doctors if it was really effective, etc. For example, pompom therapy was something unique 5 years ago, very few people knew about it, and only a few people had sugar monitoring. And I learned about these methods via the Internet. After all, then even social networks for communication were not widespread.
What treatment did the doctors prescribe for you?
Just inject insulin. They gave the book "First Steps with Diabetes" and registered for disability, and that’s it. But we were lucky again because my husband’s boss has a child with diabetes. And he, entering the situation, paid for our treatment in Israel, or to be more precise, we installed a pump.
Pump - a device designed for continuous subcutaneous injection of insulin.
There I went through a pretty good school, I was told how to feed, what lifestyle to lead, what regime is needed. Every day the doctors were in touch with me and any of my questions were substantiated and disclosed.
After returning to Ukraine, we continued to visit our district doctor, but when she saw the pump, she said that she did not understand the pumps and did not understand the monitoring. And our further visits to the doctor were only to get insulin, no more consultations and advice from the doctor. Doctors know absolutely nothing about modern methods, they do not even read about them. I do not blame doctors for this, they are not interested in it and the state does not give them motivation, because every work must be paid decently.
And what about free drugs?
During these 5 years of illness I received insulin, glucometer and only the last 2 years I received test strips. Before that we were not given anything. Argued that they simply do not exist.
For example, test strips. At the end of the year we were given 9 packages for an indefinite period. 50 pieces in each package. And the child must be sure to check the sugar before eating, and preferably after eating. Roughly speaking, we take 7 strips a day. So let’s calculate how much this package will be enough for us? Also, keep in mind that when a child is sick, it is sometimes necessary to check the sugar every hour. We were given six months, but they are enough for 2-3 months.
Zoya, please tell us about the situation with kindergartens? After all, children with diabetes are not always willing to accept?
That’s right, and we are no exception. We have formed a kind of vicious circle. The fact is that the child needs injections. According to the instructions, the kindergarten teacher must be able to make injections, but at the same time, she is not obliged to do so. There must also be a nurse in the kindergarten, but in fact, she does not always have to be there, she can work at certain hours. Of course, working with a child in kindergarten or school requires constant monitoring, and it can not be that the nurse came and went when she wanted. If the child is not yet trained and cannot test the sugar himself, someone should give him an injection. In theory, a nurse, but no nurse. Then you come to the teacher, but the teacher does not want to take responsibility. That is what to do? There is only an individual curriculum in school and kindergarten.
And how did you get out of this situation?
We went to a private kindergarten and then to a private school. There is usually a more loyal attitude. We were denied many clubs. Everyone was afraid to take responsibility and asked the same question: "What should we do if your child becomes ill?"
Give some advice to moms who, like you, have faced the same difficulties?
First, you need to find a very good endocrinologist who will teach you the rules of nutrition and will give advice. Secondly, you need to seek support from the same mothers, because they, like no one else, will understand you and your problems. And third, come to our organization. We have endocrinologists, psychologists who can give you a lot of knowledge. There are our groups, where we share useful recipes for our children, there is a group of psychological support, there is a group of sales of gadgets, joint purchases and advice, we always communicate and support each other.
Ufund has a program to help children with severe type 1 diabetes. Until recently, your donations were used to buy insulin pumps and consumables. The state does not guarantee the purchase of pumps and consumables from the budget. Therefore, we continue the program "Fund. Diabetes". You can help hundreds of children better control their sugar and delay or avoid serious complications such as kidney disease, blindness, heart attacks and strokes.
DONATION