V prispevku predstavljamo priporočila za prehransko obrav-navo kronično bolnih otrok in mladostnikov. Kronične bolezni so bolezni, ki trajajo dlje časa in pogosto omejujejo vsakodnevno življenje. ...Povečajo lahko tveganje za zao-stanek v rasti in razvoju ter vplivajo na telesno, duševno in družbeno življenje otrok in mladostnikov oziroma celotne družine. Zato sta odločilna njihova celostna obravnava in multidisciplinarni tim, v katerem ima pomembno vlogo kli-nični dietetik. Z zgodnjim odkrivanjem prehransko ogroženih pediatričnih bolnikov in ustrezno prehransko oskrbo ter rednim spremljanjem lahko pomembno vplivamo na njihovo zdravje in na kakovost življenja celotne družine. V prispevku predstavljamo najpogostejše kronične bolezni in stanja v pediatrični populaciji, pri katerih je prehranska obravnava izjemno pomembna. To so kronične vnetne črevesne bolezni, alergije na hrano, prirojene presnovne bolezni, motnje avtističnega spektra, cistična fibroza, rak in cerebralna paraliza.
Izhodišča: Cistična fibroza (CF) je najpogostejša kronična avtosomno recesivno dedna bolezen belcev. Kaže se s prizadetostjo številnih organov, zato se bolniki spremljajo v centrih CF s ...specializiranim multidisciplinarnim timom strokovnjakov. Eden takih je center CF Pediatrične klinike Ljubljana, kjer se vodijo vsi otroci in mladostniki s CF v Sloveniji. Od ustanovitve centra dalje vodimo zbirko podatkov o bolnikih, ki nam je v pomoč pri analizi razmer in pri primerjavi kakovosti obravnave naših bolnikov z drugimi evropskimi centri CF. Metode: Izvedli smo retrospektivno raziskavo z namenom pregledati in oceniti kazalce bolezni otrok in mladostnikov s CF, vodenih na Pediatrični kliniki Ljubljana v letu 2020. Pri 78 vključenih bolnikih smo analizirali podatke o demografskih značilnostih, genetskih mutacijah, pljučni funkciji, prehranjenosti, kroničnih okužbah in zdravljenju s CFTR modulatornimi zdravili (angl. cystic fibrosis transmembrane conductance regulator, CFTR – regulator transmembranske prevodnosti pri cistični fibrozi). Za primerjavo z drugimi evropskimi centri smo uporabili podatke iz letnega poročila Evropskega registra CF za leto 2020. Rezultati: Leta 2020 smo v našem centru obravnavali 78 bolnikov, izmed katerih je bilo 56 % (44/78) bolnikov moškega spola. Povprečna starost bolnikov je znašala 13,2 leta (SD 6,4 let), z razponom od 1,2 leta do 25,5 leta. Mutacija F508del je bila najpogosteje zastopana, saj je bilo kar 88,5 % nosilcev vsaj ene, pri 64,1 % obolelih pa je bila mutacija prisotna na obeh alelih. Povprečni forsirani izdihani volumen v 1 sekundi (FEV1) naših bolnikov je bil nad evropskim povprečjem, prevalenca kronične okužbe s povzročiteljem Pseudomonas aeruginosa pa nižja od evropskega povprečja. V letu 2020 smo 21 bolnikom uvedli CFTR modulatorno zdravilo, od tega 5 bolnikom lumakaftor/ivakaftor in 16 bolnikom eleksakaftor/tezakaftor/ivakaftor. Zaključek: Kazalci kakovosti obravnave otrok in mladostnikov s CF v Sloveniji dosegajo in pogosto presegajo evropsko povprečje. Med prvimi državami v Evropi smo pričeli uvajati CFTR modulatorna zdravila, ki obetajo pomembno izboljšanje kliničnega stanja in kakovosti življenja bolnikov s CF.
Commercial enteral formulas are generally recommended for gastrostomy feeding in patients with severe neurologic impairment. However, pureed food diets are still widely used and even gaining ...popularity among certain groups. We tried to compare the effectiveness of gastrostomy feeding for treatment of severe malnutrition with either enteral formulas or pureed feeds.
A 6-month nutritional intervention was made with 37 malnourished children, adolescents and young adults (2-26 years old) with severe neurologic impairment (Gross Motor Function Classification system GMFCS grade V). The individual needs were calculated. Participants were fed by gastrostomy with either enteral formulas (n = 17) or pureed food (n = 20). Measurements to assess nutritional status were made at the beginning and at the end of intervention.
The Z scores for weight-for-age and for the body-mass index increased more in enteral formula than in pureed food group (2.07
. 0.70, p = 0.0012; and 3.75
. 0.63, p = 0.0014, respectively). Fat mass index increased more in enteral formula than in pureed food group (1.12 kg/m
. 0.38 kg/m
; p = 0.0012). Patients in the enteral formula group showed increase in lean body mass expressed as fat-free mass index (0.70 kg/m
), while those in pureed food group did not (-0.06 kg/m
) (p = 0.0487).
The results suggest that even professionally planned pureed food diet is less effective than commercial enteral formula for nutritional rehabilitation of malnourished patients with severe neurologic impairment. However, larger and if possible randomised clinical studies should be made to confirm our findings.
Ukrepe, povezane s prehransko podporo pediatričnih bolnikov, ki so imeli presajen organ, kostni mozeg oz. krvotvorne matične celice, izvajamo zaradi preprečevanja okužb ob imunosupresivni terapiji ...ter za hitrejše okrevanje po posegu. Pri otrocih na imunosupresivni terapiji predstavljajo visoko tveganje za okužbo tudi nekatera živila. Tipični primeri živil z visokim tveganjem za okužbo so surova in toplotno neobdelana živila. Zaradi teh prehranskih omejitev je potrebno nameniti posebno pozornost vzdrževanju ustreznega prehranskega stanja. Pomembno je, da zagotovimo vsa potrebna hranila in energijo za rast in razvoj otroka, kar prispeva tudi k hitrejšemu okrevanju po presaditvi. Zato je ključnega pomena, da ustrezno izobražujemo zdravstveno osebje, kuhinjsko osebje in starše o ustrezni higieni, varnem ravnanju z živili z visokim tveganjem in ustrezni pripravi hrane na podlagi obstoječih smernic za mikrobiološko varnost živil.
Nutritional support measures for paediatric patients who have undergone organ, bone marrow, or hematopoietic stem cell transplantation need to be implemented to prevent infection during ...immunosuppressive therapy and to speed up recovery after the procedure. Children undergoing immunosuppressive therapy are at high risk of infection. Typical examples of foods with a high risk of infection are raw and uncooked foods. Special care should be taken to maintain an adequate nutritional status and provide all the nutrients and energy necessary for the child‘s growth and development, which will also improve recovery. It is essential to educate healthcare workers, kitchen staff and parents on proper hygiene, safe handling of high-risk foods and appropriate food preparation based on existing microbiological food safety guidelines.
This paper provides recommendations for the nutritional management of children with chronic illnesses. Chronic diseases last for a long time and often substantially decrease the quality of life. They ...can increase the risk of stunting and affect the physical, mental and social life of children and adolescents and the whole family. Multidisciplinary team should treat this group of children in which the clinical dietitian plays an important role. Early identification of paediatric patients at risk, appropriate nutritional care and regular follow-up can have a significant impact on their health and the quality of life. This article presents some of the most common chronic diseases in the paediatric population for which nutritional management is of utmost importance. These include inflammatory bowel disease, food allergies, inborn errors of metabolism, autism spectrum disorders, cystic fibrosis, cancer and cerebral palsy.