FILIP

Katjin blog (For ENGLISH version please scrool down…)

Spodnji zapis je napisala Urška, mamica Filipa. Filipova zgodba nosi optimistično in močno sporočilo in je resnično vredna branja! Urška, HVALA ti za ta zapis in hvala, ker deliš Filipovo zgodbo z nami! Verjamem in upam, da bo pomagala marsikateremu otroku in odraslemu!

FILIP

Filip je 3,5-letni fant (rojen septembra 2014), ki ima že od rojstva diagnozo Prader Willijev sindrom (PWS). To je redka genetska bolezen, ki nastane med spočetjem zaradi odkrušenja  15. kromosoma, ki je v telesu zadolžen za uravnavo lakote, če povemo po domače. Ljudje s tem sindromom so tako rekoč večno lačni, saj se nikoli ne nasitijo. Bolezen je doživljenjska, lahko vpliva tudi na sam fizični in psihični razvoj otroka, zdravila zanjo še niso odkrili.

Sami smo se s tem sindromom srečali 14 dni po rojstvu. Filip se je rodil skoraj klinično mrtev, po Abgarju je dobil le oceno 3, imel je velike težave z dihanjem, ni požiral, bil je povsem hipoton, saj samostojno ni premaknil niti ene mišice. Napovedi zdravnikov so bile hude, a kot starša sva vedela, da ni vse tako črno, kot so nama govorili. Itak, »stric« Google ve vse in med vsemi »hipotonimi boleznimi« se je znašel tudi Prader Willijev sindrom. Moja prva misel je bila, aha, sicer bo ves čas lačen, ampak hodil pa bo. Ja, vem, slišati je grozno, a meni je bilo to v tolažbo. Ko so nama povedali, kaj so pri Filipu odkrili, sva si nekako oddahnila, da je le ta sindrom, da bo fant hodil, skakal, plaval, se vozil s kolesom, govoril … Zdravnica naju je čudno gledala, nama poudarila, da je to huda bolezen, a sva jo ustavila, da bova vse zmogla, ker sva se tako odločila.

Filipa sva po 15 dneh (predvideno je bilo vsaj 1-2 meseca, s kisikom) brez kisika in z normalnim dihanjem odpeljala domov. Sprejeli smo ga kot dojenčka, ki nam bo dal veliko. Še najtežje je bilo pripraviti na vse skupaj ostale sorodnike s tisoč in enim »pametnim« vprašanjem. Kako naj vem, če ga poznam komaj dobra dva tedna, kaj bo z njim? Je naš otrok, stran ga ne moremo vreči, lahko ga le ljubimo. In smo ga … Brat Tjuš ga obožuje od prvega dne, čeprav sva mu za vse skupaj povedala šele čez pol leta. In je sprejel povsem normalno, ker je to spadalo k Filipu. Povedali so nam, da mora takoj začeti s fizioterapijo in tako smo spoznali Tamaro iz takrat ZD Šiška, ki nam je skoraj dnevno vlivala upanje, da smo na pravi poti. Danes sva ji hvaležna iz dna srca, da je fizioterapevtka z velikim srcem. 

Filip na začetku ni imel težav s hrano, čeprav bi moral vsaj pol leta zavračati hrano. Pridno je mljaskal moje izčrpano mleko, se normalno redil in rastel. Je pa res, da smo imeli reden urnik prehranjevanja na 3 ure od prvega dne naprej. Tudi ko je začel jesti gosto hrano, je ta ritem ostal. Do nekje drugega leta kake posebne želje po hrani ni kazal, po tem letu pa se je vse skupaj rahlo povečalo. To pomeni, da je želel jesti, če smo jedli tudi mi, da je želel jesti tisto, kar smo jedli mi. Naj še povem, da do danes Filip še ni poskusil kar koli predelanega sladkega, kar lahko kupimo v trgovini. Ne pozna čokoladic, Kinder jajčk, bonbonov, sladoleda. Bila sva mnenja, da se bo od tega zredil in da je vseeno, če teh stvari ne pozna. Spet je bilo najtežje na to privaditi okolico, češ, kaj mu pa lahko je. V bistvu nič, a dolgoročno je to propad njegovega zdravja. 

Pri njem je najtežje krotiti lakoto. Ljudje se ne zavedajo, da so ti otroci pol ure po obroku spet lačni. Lačni za umret. In bi za hrano naredili vse, pojedli tudi pasje brikete, če bi jih lahko. Jedli bi lahko, dokler jim ne bi počil želodec. Naš hladilnik je že dve leti pod ključavnico. Ker je to najlažje, saj Filip ve, da je tam hrana in da če ga odpre, vedno najde kaj zase. Zato smo ga zaklenili takoj, ko je shodil. Žal, piki, ne da se odpreti, čez dve uri se bo. Ja, Filip je nekje na 3 ure. To sicer pomeni, da ima zajtrk ob 8.00 in da ga zjutraj dve uri prepričujem, da žal še ni čas za hrano, da bo »pol'« (potem). Beseda pol mu trenutno pomeni dovolj, da zdrži naslednje pol ure, preden spet pride vprašati, če je kaj za jest. In tako delujemo ves dan. Prepričujemo ga, da je malica pol', da je kosilo pol' … Veliko je tudi joka, joka tistega užaljenega otroka, ki ne dobi igrače. Če bi nas kdo opazoval, bi mislil, da otroku nočemo dati hrane. Ja, res je nočemo! Ker mu je ne smemo! Ker z vsakim dodatnim kosom česarkoli dobi preveč kalorij dnevno. Težko je, a z močno voljo, našo trmo, vzgojo v pravo smer premagamo vsak dan sproti.

Ob koncu drugega leta je shodil, v vrtcu je pokazal neverjeten napredek v tretjem letu, vzgojiteljica Jana in njena pomočnica Simona iz komendskega vrtca sta zlati osebi. Se je pa tudi njegov apetit izboljšal v tem smislu, da je začel uživati v hrani. Lepo počasi in z užitkom. Na krožnik je dobil sicer malo porcijo, a jedel je počasi, do zadnje drobtinice, nikoli ni bilo nič za stran. Tu se je pokazala najina prva napaka v prehrani. Na veliko smo se izogibali sladkorju (beri vsem sladkim stvarem), nisva se pa zavedala, da je sladkor v obliki OH veliko hujši. Že čez poletne počitnice je naš fant v dveh mesecih pridobil skoraj 2 kg, kar je bilo za njegovih komaj 90 cm preveč. Bil je že malo špehat s svojimi 15 kilogrami. Pojedel je namreč ogromno kruha, riža, krompirja in testenin. Vse to je bilo dnevno na našem jedilniku čez poletje, saj je to najlažje skuhati. Vsi smo opazili, da smo se vsi zredili, a bili smo tiho. Saj veste, samega sebe prepričuješ, da si suh, čeprav veš, da to ni res. 

Decembra 2017 smo bili na redni letni kontroli. Oba samozavestna, kako nam gre dobro, saj je Filip že dobro leto hodil, skoraj že govoril, napredoval v vsem, skratka. A po parih minutah, ko je Filip stopil s tiste tehtnice, je zdravnik najino samozavest poteptal z obema nogama. Če bi naju takrat kdo fotografiral, bi zagotovo imela oba odprta usta in izbuljene oči. Besede zdravnika »Filip je za svojo velikost predebel in je na 15 precentili. Treba bo izredno paziti na njegovo težo, ker ste že na poti, da se preveč zredi«. Petnajst !!!!!!!!! Midva umirjeno vprašava, kaj predlaga. Nisva se smela pogledati, ker bi padla v jok. Vsak v svojem svetu sva le slišala, naj ukineva OH, čim več. Torej kruh, testenine, krompir, riž. Hvala, gospod doktor. In sva šla. Ne spomnim se, kaj sva se po poti pogovarjala, vem le, da sva do doma že imela izdelan plan, kako bova v vrtcu poskušala dopovedati kuhinji, da Filip ne sme ničesar več od tega jesti. Za doma sploh nisva razmišljala. V glavi sva imela le dejstvo, da se otrok ne sme zrediti.

Cel december sva se z nutricionistko v vrtcu uspešno dogovarjali za ustrezno dieto in da mora Filipu zmanjšati njegove kalorije na 900 kcal dnevno. Nanjo sem zelo ponosna, saj je ključna oseba pri razvoju v vrtcu in sem ji res hvaležna za vso njeno podporo. S pomočjo vzgojiteljice nam je na koncu uspelo, Jana, hvala. Doma smo se mi trije še vedno »basali« s kruhom in sladkarijami. To sva midva nujno potrebovala, da sva pregurala še to zadnjo fazo odločitve. Nekje v decembru mi je skočilo na FB neko sporočilo o LCHF dieti. Zanjo sem slišala že kakšne dobre pol leta prej, vendar nisem našla poguma, niti nisem imela volje se z njo ukvarjati. Lažje je bilo jesti. Začela sem študirati to prehrano (danes ji ne rečem več dieta, ker je del našega življenja) in ugotovila, da bo to za nas najboljša rešitev. Pred silvestrovim smo pospravili kuhinjske omare, vrgli smo stran vse OH in kupili meso ter zelenjavo. Odločila sva se. Od 1. januarja 2018 se naša družina prehranjuje po LCHF. Da delamo Filipu lušte, ni imelo več smisla.

Pri odločitvi mi je pomagala Katja Bizant Lutar, ki jo poznam že 11 let. Nisva bili sicer v rednih stikih, a FB naredi svoje, da nekako spremljaš človeka, tudi če ga ne srečuješ osebno. Povezuje naju še prav posebna stvar, a njena ideja o LCHF naju je združila ponovno. Na njeni spletni strani www.lchf-style.si in na FB strani https://www.facebook.com/lchfstyle/ sem si prebrala vse mogoče informacije o tej prehrani, o težavah, s katerimi se lahko srečamo, o dobrih lastnostih prehrane. Slabe me niso zanimale, ker sem verjela, da slabše, kot je, skoraj ne more biti. Spotoma mi je namignila še kak dober recept. S svojo nevsiljivostjo in preprostostjo nam je pomagala, da smo prebrodili tiste prve tri mesece, ko je najtežje. Danes smo ji lahko hvaležni.

Filip je bil že utečen, ker je to nehote prakticiral že od decembrskega obiska zdravnika, midva z možem sva bila psihično dovolj stabilna za ta korak, ta večji sin se je moral prilagoditi na hrano doma, v šoli je normalno. Prvo vprašanje je bilo, kako pustiti kruh. Še par dni nazaj sem pojedla ta veliko čokolado za šalo malo, zdaj pa je bil sladkor zame prepovedan. Mož je bil še bolj v šoku, začel je jesti jajca brez kruha, ko je prej pojedel pol kile kruha zraven treh jajc. Skratka, preštudirala sva vse o LCHF, naredila seznam »dovoljenih« živil in začela kuhati. Mož je kuhar, sama ne kuham, a kar naenkrat se je dalo pripraviti preproste in zanimive stvari. Pa zraven je bila maščoba, ocvirki, zaseka, pa meso! Mmmmmm, same dobrote. Nobene krize.  Zdržali smo, v vrtcu smo sklenili kompromis, da vse dovoljene OH dobi tam, doma je tega minimalno ali skoraj nič. Ima t. i. nizkokalorično prehrano, čim bolj v okviru LCHF. V službi sem odpovedala kosilo, s seboj si nosim malico, ki si jo lično pripravim vsak večer. Z veseljem si skuham. Mož je odkril nove skrivnosti kuhanja, celo LCHF potico je spekel. Skratka, uživamo in ne trpimo. In hujšamo! No, Filip je ostal tam, kjer je bil decembra. 

A vseeno te nekje zadaj gloda tisto vprašanje, ali si se odločil pravilno. Sama sem do julija shujšala 20 kg, več kot pol metra manj me je po obsegu, možu pri minus 13 kg manjkajo le še »sixpacki«, energije imava oba na pretek. Ta večji sin se od poletja ni več zredil, le zrastel je, počuti se super. Kaj pa Filip? Je poln energije, fizično je napredoval, govori kot strgan dohtar, s hrano nimamo težav, ker poje, kar mu pripraviš. Obožuje jogurt z malinami. Lahko bi živel od tega ali od paprike. Skromen dečko. Vsak dan se tehtamo, on sicer ne ve, zakaj, a številke, ki se pokažejo, so mu všeč. Meni pa tudi, ker je tehtnica pokazala nazadnje, pred D-dnevom, 15,5 kg. 

Mož ga je peljal na kontrolni pregled v Pediatrično kliniko k doc. dr. Kotniku, dr. med. na oddelek Endokrinologije, kjer ga vsako leto kontrolirajo. Ob srečanju je bil zdravnik tako presenečen, da je pogledal v računalnik, če je srečal pravega otroka. Izraz na obrazu, ki je kazal, da je z njim več kot zadovoljen, je možu dal pogum. Na vprašanje, kaj smo naredili s seboj, saj je s tem mislil tudi na postavnega očija, je mož previdno odgovoril, da smo spremenili prehrano in šli na LCHF. LCHF prehrana je namreč med zdravniki različno sprejeta, zato je bila previdnost vseeno na mestu. A dr. Kotnik mu je čestital, poklical k sebi še nutricionistko dr. Čampa ter predstojnika oddelka prof. dr. Tadej Battelino, dr. med. Odgovor na vprašanje, s kakšnimi težavami se srečuje Filip, je predstojnika oddelka povsem presenetil, saj še ni videl tako »suhega« otroka s PWS. Vsi trije so navdušeno pozdravili LCHF prehranjevanje, saj ga tudi sami skušajo »uvesti« pri teh otrocih. Nad nami pa so bili še toliko bolj navdušeni, saj smo se za to odločili sami od sebe in so rezultati že vidni. Filip je v pol leta zrastel 6 cm in se zredil le 0,5 kg, tako kot »normalni« otroci njegove starosti. Vzeli so ga kot primer dobre prakse, zato ga bodo sedaj bolj pogosto merili, da vidijo, kako ketoza vpliva nanj. Izvidi so namreč pokazali, da je vse v mejah normale, kljub polletnemu LCHF prehranjevanju doma. Zdaj pa novim zmagam naproti.

Urška, julij 2018

ENGLISH version:

FILIP

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.si 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, July 2018

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Z nadaljnjo uporabo te spletne strani se strinjate z našo politiko piškotkov. Nastavitve piškotkov lahko kadarkoli spremenite s klikom na povezavo v nogi te strani.

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Ti piškotki so vedna omogočeni in so nujni za osnovno delovanje spletne strani. Torej piškotki, ki si vas zapominjo, da boste lahko nemoteno brskali po spletnih straneh. V to skupino sodijo piškotki, ki so uporabljeni za to, da si spletno mesto zapomni vaš vnos v spletne obrazce, nakupovalno košarico ipd. Obvezni so, saj, med drugim, zagotavljajo varnost in tako preprečujejo zlorabe sistemov.

Ti analitični piškotki nam omogočajo, da z uporabo anonimnega sledenja izboljšamo funkcionalnost strani. Prav tako nam omogočajo, da lažje identificiramo produkte, ki bi bili za vas zanimivi. V nekaterih primerih je prednost teh piškotkov izboljšanje hitrosti za obdelovanje vaših zahtev, zaznavanje in shranjevanje vaših nastavitev ter pomoč pri povezavi s socialnimi omrežji.Če teh piškotkov ne boste izbrali, se to lahko odraža v slabše oblikovanih priporočilih in počasnejšem delovanju spletne strani. Prav tako bo otežena povezava s socialnimi omrežji, kot so Facebook, Twitter, Google+ ipd.

Ti piškotki zbirajo informacije, s katerimi prilagodimo oglaševanje vašemu okusu, preferencam in željam. Te podatke uporablja tako naša spletna stran kot tudi partnerske in druge spletne strani. Zbrani podatki so anonimni in ne vsebujejo nobenih osebnih podatkov, ki ste jih morda delili z nami. Če teh piškotkov ne boste izbrali, bodo morda oglasi, ki jim boste izpostavljeni, manj primerni za vas.