A Conversation With The mother Of A Family Of Six With Three Diabetic Children
The news of a family with four children, three of whom have diabetes, resonated quite far. Meet Monika, wife, mother and queen; a heroine who, with the help of her husband and the help of her extended family, leads an epic battle for the normal sugars of her three children.
Nice to meet you Monica. I guess it’s always this fun with your slightly larger family? Have you and your husband always wanted four children or has that desire evolved over time?
Yes, it’s always this hilarious! As we are a family with four small children. There is always play, laughter, dancing, singing and various gymnastic acrobatics at any time of the day and sometimes at night.
We have always wanted as many children as God wants to give us. I come from a family with three children, so more children were not foreign to me.
Our oldest child is Magdalena, who has just turned 6, which she is very proud of. 15 months after Magdalene was born Benedict who is now 4 and a half years old. A very sharp-whitted boy, a real little sage when it comes to the things he wants. Our third child is a girl Margareta, who is 3 years old, a little imaginative storyteller, family PR. The youngest molly is Dominik who has just turned 2 years old.
When did you first face childhood diabetes and how did you feel at the time? Did you know anything about diabetes or a diabetic at all until then?
We first faced childhood diabetes in April 2016. Benedict, then 3 and a half years old, was diagnosed with insulin-dependent diabetes. The first symptoms of insatiable thirst, hunger and unusually frequent urination were noticed by my husband. He was already familiar with the disease, as his mother has been suffering from type I diabetes since he was 18 years old.
There was a huge shock because you do not expect such a disease in small children. This diagnosis caused us great sadness, fear and grief because we knew approximately what therapies were needed and how insidious the disease was because it was somehow hidden under the skin. We soon realized that we would have to change a lot. Personally, I cried many times during the night hiding from children’s eyes. It took me a long time to at least slightly accept the new state that will haunt us from now on and forever.
Benedict was in remission for the first three months receiving only one injection a day. This made it easier for us to start, but it also deceived us to some extent because we took the importance of diet a little lightly. Upon arrival from the hospital, I weighed my lunch food according to the recommended tables. However, all the children at the table were looking for more. And the oldest Maggie who otherwise has a weaker appetite, and Benny with newly diagnosed diabetes and a younger girl who otherwise has a very good appetite. So I realized for myself how individual this disease and its therapy is and how parents play the biggest role. Benedict continued to be cared for by his grandmothers and aunts in kindergarten, and we continued to work on our jobs as before.
What is the situation now after a year, since diabetes came to your family uninvited? Emotionally it is certainly very difficult. What is your guiding thought that keeps you “on the surface”?
Unfortunately, after a year, diabetes surprised us again in May this year. Then we discovered type I in two younger children aged 3 and less than 2 years. Now the situation is far more complicated. We overcame the initial shock. Now there are 100 new problems. Today we do not have time to “wake up”, but we are focused on specific everyday life situations, since these are three chronically ill small children. It depends on us adults what kind of life they will have.
What keeps me going is that with diabetes it is possible to live normally, be healthy, achieve success. I don’t want to limit their childhood in anything (except food). It means a lot to me when I read somewhere how sick people are actually successful and how they can achieve a lot. Many celebrities have type I diabetes and that doesn’t stop them from running entire states, as is the case with the Prime Minister of the United Kingdom.
Genetic familial predisposition obviously exists? Have you perhaps done HLA typing?
Genetic familial predisposition apparently exists, given that 3 out of 4 children are affected. Although on the father’s side no one but the mother had diabetes, and he comes from a large family. For my part, there is also no diabetes, however, with the onset of the first diabetes, I also developed autoimmune Hashimoto’s thyroiditis. HLA typing is also planned, so we’ll see what they show.
Have you thought about what was the trigger for the development of diabetes? Possible triggers in the literature are mentioned: viruses (infections, vaccinations, contact with a vaccinated child, bathing in a fountain;); stress (school, moving, parting from someone to whom the child is very attached); food intolerance (milk, soy, gluten); permeable hoses; deficiency of some minerals; exposure to heavy metals or anything else you suspect has overstrained the child’s body.
When your child gets sick, you think, “What did I do wrong?” For the purpose of analysis, we began reviewing the children’s photographs following the changes in Benedict who became ill first. We noticed that he started to lose weight significantly after recovering from pneumonia. He received it at the age of 2 years, so he drank azithromycin 2x at intervals of 4 months. Unfortunately, this spring the same thing happened to the younger son. When we were offered azithromycin, we refused. Unfortunately, Dominic also developed diabetes. But at least we know one more thing.
Until the onset of diabetes, they were properly vaccinated, at the moment we are somehow “late” with that.
As for the stress in the family I can say that it was present to the usual extent. We are both employed parents, and due to the financial situation I returned to work earlier than a year of maternity leave. The children were mostly cared for by their grandmothers, they were enrolled in the city kindergarten, but they were often ill, so the grandmothers preferred to keep them healthy rather than sick. In the meantime, we also moved, but that was after the appearance of the first diabetes.
They did not show food intolerance. All were breastfed until 6-8 months of age. After that, they switched to adapted milk, and after the age of one month and which month, they switched to cow’s milk.
What comes to my mind now is that they did not receive vitamin D regularly during that period, and we did not give them any special vitamin syrups, except possibly in the winter months due to viruses.
Can you perhaps spot some characteristic of their personality that could be related to diabetes (e.g., some people are explosive and some keep everything to themselves) and some characteristic of your upbringing?
For Benedict, who was the first to fall ill, I can say that he is a child who gets angry quickly, but also gets cool quickly. Dominic was a calmer baby than the others until he walked and followed in the footsteps of the older children in the house. However, he was nervous if he didn’t get something he really wanted right away. He knew how to show it by shaking his body, like when we grit our teeth. Margaret, who is also newly discovered, is usually Dad’s pet and is not strictly brought up at all. She is very kind and did not show any signs of an explosive character, although she is persistent and when she needs something (it was a glass of water) she will repeat it 100 times until she gets it. The oldest girl, Magdalena, is a calmer and more shy type of child. I am of the opinion that parents should still be parents, not friends to their children.
Did you perhaps get some advice from a diabetologist or devise some strategy on how to try to preserve the health of the oldest girl who does not have diabetes and the younger girl who is currently borderline?
We did not receive specific advice on diabetes prevention, not even a year ago, nor now. My first impression was that there was nothing to prevent diabetes. Since we started researching low carb diets and consulting with those more experienced than ourselves, we introduced such a diet for all children. I believe this will help at least in prolonging remission and semi-remission.
How do you manage to reconcile four children, diabetes, work and life? What does your typical day look like? What do you find most difficult? Is anyone else helping you?
As we are both busy parents full time, the challenge is very big. After the first diabetes, on the recommendation of doctors and psychologists, we tried to keep our lifestyle unchanged. Benedict went to kindergarten as before and was cared for by his grandmothers. He received insulin in the morning and in the evening, with possible corrections during the day.
Our typical day begins with waking up, measuring sugar, giving insulin, breakfast, getting ready for kindergarten / grandma and work. After work, “gathering” children from kindergarten or grandma, returning home, possibly going to sports, to friends, to the store, to the park and again insulin, dinner and sleep, and household chores as far as possible. With four young children born 4 years and 16 days apart, we thrived with the help of retired grandparents. Without them I think it would be impossible to work full time. When they go to kindergarten, one usually gets sick very quickly, which usually means that the others will soon be sick as well. Without grandmothers, who were always willing to selflessly jump in, we would often have to be absent from work. When Benedict fell ill, we realized that his sugars were still better when he was cared for by his grandmothers, however, with two newly discovered diabetics, his grandmothers are no longer able to take care of them while we are at work.
Recently, we also have a volunteer from the Sweet Service project of the 3L Association who accompanies Benedict twice a week at the tennis school she attends for free thanks to the Zagreb Diabetes Society.
How do children cope with the new situation? And your extended family, colleagues, environment and friends? Do they meet you when needed?
I think kids cope better with diabetes than I do personally. They certainly don’t think like “How high or low is their blood sugar level now?” With the help of acting skills, we try to accept it in a way that it is so now and that when you get diabetes you have it permanently, but you are healthy because you measure your sugar, you get your insulin, you watch what you eat. I believe that God does not give every evil for evil and that this way of life our children will be saved from some other vices.
There is great shock and disbelief within the family. No one has encountered diabetes at such an early age and in three out of four children. Many still think that they may be cured in some way.
We still have to explain to our friends that they don’t bring us sweets. I hope they understand why there are no common snacks on children’s birthdays and when they come to visit us. At work (my husband and I work in the same company) we found only support and for that we are maximally grateful to the management.
Which aspect of diabetes do you as parents and children have the hardest time with? Is it tingling, control results, diet, fear?
From the beginning, the most difficult thing is to endure insulin stinging. Even today, Benedict says, “Stupid insulin! What again today? Don’t give it to me again, I’ll run 100 laps! ”It’s even harder with younger children, because they understand even less why they need it. The youngest Dominic, who isn’t talking yet, as soon as he sees the pen, he can still say “oh no.” There are often bruises at the injection site. With diet it is also difficult because sometimes we are not allowed to give food to children even though they are hungry, we wait for the insulin to start working. Otherwise they always end up in hyperglycemia. Problems also occur with hypoglycemia, of which there are at least two on a daily basis. Only Benedict recognizes the signs and warns with the words, “My legs are shaking.” The worst fear that flows through the body every time we measure low sugar. It used to happen that I would give Dominic dextrose and I think everything was resolved, and then in 5 minutes I would find it on the floor.
What insulin doses are you on? What is your family’s typical daily menu? Are kids picky and hard to eat?
As for the menu, we mostly choose the foods we’ve tried and roughly know how they work on sugars. Breakfast and dinner are mostly similar, some black bread, turkey salami, cottage cheese, sour cream, eggs, bacon and some salads (cucumbers, tomatoes). Children have been shown to have better sugars when they eat fried eggs, some bacon and low-fat salami. For lunch we usually eat soups (chicken and broccoli are our favorites), meat in various forms, stews (especially beans), very occasionally potatoes. We do not consume pasta and rice because it has been shown that we cannot maintain a good sugar level due to a sudden rise that insulin does not catch up on time. We are persistent with vegetables and salads, but they are still not well received. The fruit is reserved for snacks (unfortunately without some of the favorite types like bananas and watermelons (). In addition to the choice of foods, we certainly pay attention to glycemic indexes. For foods like cornflakes, oatmeal and semolina, we have not been able to find the right doses so we no longer practice this. Buying food has also become a bit more complicated for us, because in addition to looking at prices, we have to turn around each product and read the declaration and compare it until we find the one with the least “damage”, i.e. carbohydrates. Since they are so small, they don’t understand why something shouldn’t or must be eaten right now. Sometimes it happens that they do not eat their favorite food, and they received insulin. Then we have to be very imaginative in order to feed them concrete food after all, and not with anything just to avoid hypoglycemia. It is positive that we have introduced new healthier foods and ways of preparing food without unnecessary fats in the past year. I admit, the taste is even better.
How do typical glycemia move and how much is HbA1C in children? Do you feel you can keep it all under control?
As we were once able to use the FreeStyle Libre sensor for continuous measurement, we found that the glycemic curves resemble the Alps. Benedict has specific sudden rises after a meal and sudden drops when insulin starts to work. We are still struggling with this and combining doses and times and places of insulin administration. Comparing the graphs of children who are newly discovered and still in remission, we see that with a certain dose of insulin, the sugar level is within satisfactory limits.
HbA1C values range from 6.5 to 7.9. Interestingly, the first diabetes was detected with a value over 9, the second 8.8 and the third 6.6. I wish we were always below 7.5. On the other hand, we occasionally treat them to ice cream and fries from McDonalds, cakes for birthdays. Once it happened that after the purchase we found candies in the children’s pocket and they were not on the bill (?!). So that there would be no stealing ice cream from other children in the park, we make sure that the children adopt the habit of being able to eat ice cream if the sugar level allows it and if we cover it with the right dose of insulin.
What do children crave the most? And what do you as parents need the most?
What I miss the most is the carelessness in terms of the danger of falling into a coma, eating and going out. Our park backpack is full of gauges, insulin, glucagon (I’m constantly afraid (“What if one won’t be enough for me?”), Dextrose, biscuits and all the other rescue aids in case of a hypo or hyper. Sometimes we all get ready, but we can’t get out because we’ve found that someone is in the hypo.
Children crave the food that others consume without thinking at all. They often ask for chocolate, pitted white bread, bananas, pancakes, pasta or as they say “pasketti“.
So far, we have somehow managed to manage financially with two salaries. We were not users of any child allowances and we even managed to find room for two sensors to continuously measure glucose per month. Given that the need for increased care is now at an alarming level and that the recommendations of doctors and psychologists are such that one of us stops working, we find ourselves in a significantly changed financial situation. First of all, we have to move again because we can no longer finance the monthly rent of the apartment. We also can’t afford sensors because we barely funded them with two salaries for one child, and now the need for them has tripled. And if we manage to get a sensor to whom to apply it?
Finally, tell us what you regret the most and what you hope for the most?
What I regret most is the carefree childhoods that are over. I most hope that large and small patients will be able to receive sensors through the HZZO and that this will help prevent complications of the disease. I also secretly hope that one day there will be prevention of autoimmune diseases, and the cure for chronic incurable diseases like diabetes will not remain just an episode from the SF series Star Trek
This large family needs Libre sensors or financial assistance for their purchase. If you are able to help, you can also pay your contribution to the accounts: Monika Muratović HR4423600003221734686 (ZABA). Jasmin Muratović HR1223900013208880711 (HPB). “donation”)