Katja’s blog

The note was written by Urška, Filip’s mother. Filip’s story carries an optimistic and powerful message and is truly worth reading! Urška, THANK YOU for this write-up and thank you for sharing Filip’s story with us! I believe and hope that it will help many children and adults!

Filip is a 3.5-year-old boy (born in September 2014) diagnosed with Prader-Willi syndrome (PWS) at birth. 

This is a rare genetic disorder caused during conception when the 15th chromosome chips off – the chromosome which regulates the feeling of hunger, as one might say. People with this syndrome are constantly hungry, so to say, and they never feel satiated. It’s a lifelong disorder and it can influence the physical and mental development of the child; the cure hasn’t been discovered yet.

We got acquainted with this syndrome 14 days after Filip’s birth. Filip was born clinically almost dead (Apgar score: 3). He had difficulties breathing, he didn’t swallow, he was completely hypotonic – he couldn’t move but one muscle on his own. The doctors’ prognoses were bad, but as parents, we knew that not everything was as gloomy as they kept saying. Of course, Google knows everything and among “hypotonic illnesses”, there was also Prader-Willi syndrome. My first thought was “OK, he’ll be constantly hungry but at least he’ll be able to walk”. Yes, I know, it sounds horrible but this thought was consoling to me. When they told us about Filip’s state, it was a kind of a relief – it’s just a syndrome; the boy is going to walk, jump, swim, ride a bike, talk … The doctor looked at us in a weird way and emphasized that it is a serious disorder. We stopped her and told her that we would manage everything because we decided to do so.

After 15 days (it was supposed to be at least 1-2 months, with oxygen) we took Filip home without extra oxygen; he was breathing normally. We accepted him as a baby who gave us a lot. The most difficult part was to explain everything to other family members who had thousands of “smart” questions. How should I know what was going to happen to him? I had known him only for a fortnight. It was our baby, we couldn’t put him away. The only thing we could do was to love him. And we did. His brother Tjuš had loved him since the first day although we told him about Filip’s state half a year later. And he accepted it without problems because this was something that was connected to Filip. They told us that Filip needed to start with physiotherapy right away and this was how we met Tamara of Community Health Centre Šiška in Ljubljana who gave us hope on a daily basis that we were moving  in the right direction. Today we are grateful from the bottom of our hearts that she is a physiotherapist with a big heart.

At the beginning, Filip didn’t have any troubles with food although he was supposed to reject it for half a year. He enjoyed drinking my pumped breast milk; he put on weight and grew normally. Since the first day, we had a fixed feeding schedule (feeding every three hours). Also when he started eating solids, we stuck to the feeding schedule. Until the second year he didn’t show any special desire for food; after the second year his appetite grew a bit. This means that he wanted to eat if we were eating and that he wanted to eat the things we were eating. Let me mention that up to the present day, Filip hasn’t tried any processed sugary food that can be bought in a store. He hasn’t eaten chocolate, Kinder Eggs, candies, ice-cream. We thought he could gain weight from such food and that it doesn’t matter if doesn’t know that sugary treats exist. Again, the most difficult part was to “educate” the people around him who were thinking that such food could do no harm to him. It’s true in a way, they wouldn’t harm him but in the long-run, it leads to deterioration of his health.

Filip started walking at the end of the second year; in kindergarten, he showed immense progress in the third year. His appetite improved, meaning that he started to enjoy food, slowly and with pleasure. He was given small portions but he ate slowly till the last crumb; there was never anything to be wasted. This is where we made our first mistake. We globally avoided sugar (all sugary types of food), but we didn’t realize that sugar in the shape of carbohydrates is even worse. In summer holidays our boy gained almost 2 kilos in 2 months, which was too much for a 90-centimeter-tall boy. He was already quite fat having 15 kilograms. He used to eat a lot of bread, rice, potatoes, and pasta. Our summer menus daily featured these types of foods because they were the easiest to prepare. We all noticed that we gained weight but we didn’t talk about it. You know, you try to convince yourself that you are slim but in fact you know it’s not true.

In December 2017 we attended a regular health examination. My husband and I were both self-confident, we believed we were doing great because Filip had been walking for more than a year, he had almost started talking and he had advanced on all levels, to put it shortly. After a few minutes Filip stepped off the scale, the doctor crashed our confidence in no time. If somebody had taken a picture of us in that moment, we sure would have had our mouths wide open, our eyes bulging out. The doctor said that Filip was too heavy for his height and that he is at the 15th percentile. He said that we would have to watch his weight otherwise he would gain too much.  Fifteen!!!!!!!!! Calmly we asked for doctor’s advice. We couldn’t look into each other eyes because we would start crying. In trance, each of us heard only that we needed to cut down on carbohydrates, as much as possible, that is bread, pasta, potatoes, rice. Thank you, doctor. And we left. I don’t remember what we talked about on our way home, I just know that by the time we arrived home we had made a plan how we were going to explain to kindergarten staff what Filip was not allowed to eat anymore. We didn’t think about preparing food at home. Our only thought was that our child mustn’t gain weight.

We spent the whole December convincing the kindergarten nutritionist that Filip’s daily calorie input should not exceed 900 kcal. At home, the three of us still indulged in bread. We needed this so that we could come to our last decision. Somewhere in December, I came across a Facebook post about a LCHF diet. I had heard about it some half a year before but I was never courageous enough to try it nor had I wanted to. It was easier to eat. I started reading about this diet (today, I don’t call it a diet anymore because it is a regular part of our lives) and I found out that this was the best solution for us. Before New Year’s Eve we cleaned up our kitchen cabinets, threw away all carbohydrates, and bought meat and vegetables. I made a decision. Since 1st January, our family has been using only LCHF recipes. When we were still eating carbohydrates, the boy craved for them and that made no sense anymore.

Katja Bizant Lutar whom I have known for 11 years helped me with my decision. We hadn’t really been in touch much but Facebook helps you to follow a person even if you don’t meet them in person. Something special connects Katja and me and now we are connected again through LCHF. On her website www.lchf.style and FB page lchf.style I read all kinds of information about this diet, about problems you can encounter, about the good sides of it. The bad sides didn’t interest me because I believed it couldn’t get any worse as it already was. She suggested some good recipes, too. With her unobtrusive and simple way, she helped us get through the first three months when it was the hardest. Today we are very grateful to her.

Filip had no problems because he had been eating such food since the examination in December. Me and my husband were mentally stable enough to make this step, the older son had to adjust to homemade cooking, in school he eats regular meals. The first question that arose was how to stop eating bread. A few days before I had eaten a big chocolate in no time, and now sugar was forbidden for me. My husband was even more shocked; he started eating eggs without bread while just before that he had eaten half a kilo of bread and three eggs. To put it shorty, I studied everything there was to know about LCHF, I made a list of »permitted« types of food and started cooking. My husband is a cook, I don’t cook much, but all of a sudden I was able to prepare simple and interesting dishes. And I could use fats, cracklings, minced lard, and meat! Yummy, all the good stuff. No crisis. We made it! In kindergarten we made a compromise that Filip gets all the allowed carbohydrates there and no additional ones at home (or close to none). He has got a so-called low-calorie diet, resembling LCHF as much as possible. At work I stopped eating lunch, I carry my own snacks which I prepare neatly every evening. I enjoy preparing food. My husband has discovered new cooking secrets, he has even made a LCHF cake. In sum, we enjoy it and don’t suffer. And we keep losing weight. Only Filip’s weight hasn’t changed since December.

And yet there is still one question lurking above our heads – have we made the right decision? By June I have lost 15 kilograms, I have lost more than half a meter around my waist; the only thing missing with my husband, who is now 13 kilograms lighter, are the six-packs; both of us are full of energy. The older son hasn’t gained weight since summer, he has only grown and he feels excellent. What about Filip? He is full of energy, he has advanced physically, he talks uninterruptedly; food is not a problem anymore because he eats what we prepare for him. He loves yoghurt with raspberries. He could live on that or on peppers. He is a humble boy. We weigh ourselves daily, he actually doesn’t know why, but he enjoys the numbers that are shown on the scale. And I enjoy them as well – the last numbers, before D-day: 15.5 kilos.

My husband took Filip for a control examination to Paediatrics to Mr Kotnik, MD (department of endocrinology) where he is has his annual check-ups. Upon meeting Filip, the doctor was so surprised that he had to re-check his computer to see if it was dealing with the right child. The expression on his face showed that he is more that satisfied with the boy, and this gave my husband courage. The doctor wondered what we had done to achieve such change (my husband included – he is now a well-shaped man). My husband cautiously explained that we had switched to LCHF diet. The fact is that doctors’ opinions about this diet differ, so caution was needed. The doctor congratulated him and summoned the nutritionist Mrs Čampa, MD and the head of the department Mr Tadej Battelino, MD. When the head asked what Filip’s problems were he was surprised to hear the answer as he had never seen such a “slim” child with PWS before. All three of them applauded the LCHF diet since they have been trying to introduce it to such kids themselves. We amazed them because we had made a decision for LCHF on our own and the results were already there. In half a year, Filip has grown 6 centimetres and gained only 0.5 kilos, as “normal” children of his age do. They have taken Filip as an example of good practice; now they are going to measure him more often to see how ketosis influences him.  The test results show that everything is at normal levels despite a six-month LCHF diet. And now, let us conquer new horizons.

Urška Perko, July 2018

• updated May 2019