PKU watch Conclusions
Feeding a young child with PKU is particularly challeng- ing, but many difficulties are an extension of the issues seen in healthy children. The practical problems observed are commonly associated with caregiver inability to main- tain routine and consistency, their depression or anxiety and issues associated with child appetite, satiety, and food neophobia. It is important to support families in im- proving their parenting skills and giving them the reassur- ance that with perseverance and patience any feeding difficulties are likely to be overcome with time.
References 1 Birch LL, Marlin DW (1982). I don't like it; I never tried it: effects of exposure on two-year-old chil- dren's food preferences. Appetite. A3: 353-60 2 Chatoor I, Ganiban J (2003). Food refusal by infants and young children: diagnosis and treatment. Cognitive and Behavioral Practice 10; 138-146 3 Hui Liu Y et al (2005). Feeding behaviour of infants and young children and its impact on child psy- chological and emotional development. Encyclopaedia on Early Development: Eating behaviour, Centre of Excellence for Early Childhood Development. page 1-7 4 MacDonald A, Rylance G, Asplin D, Harris G, Booth IW (1997). Abnormal feeding behaviours in phenylketonuria. Journal of Human Nutrition & Dietetics. 10, 3, 163-170 5 McDermott BM, Mamun AA, Najman JM, Williams GM, O'callaghan MJ, Bor W (2008). Preschool children perceived by mothers as irregular eaters: physical and psychosocial predictors from a birth cohort study. J Dev Behav Pediatr. 29: 197-205 6 Piazza CC, Fisher WW, Brown KA, Shore BA, Patel MR, Katz RM, Sevin BM, Gulotta CS, Blakely-Smith A. Functional analysis of inappropriate mealtime behaviors. J Appl Behav Anal. 2003 Summer 36: 187-204 7 Scaglioni S, Salvioni M, Galimberti C (2008). Influence of parental attitudes in the development of children eating behaviour. Br J Nutr. 99 Suppl 1:S22-5 8 Satter EM (1986). The feeding relationship. J Am Diet Assoc. 86: 352-6 9 Satter E (2000). Child of mine: Feeding with love and good sense. Palo Alto, CA, Bull Publishing
PKU watch - prescription update
by Eleanor Weetch Dietitian Advisor NSPKU
There have been a number of changes recently to the PKU foods available on prescription – some additions, but rather more deletions. I understand this has been due to lack of demand for some items (biscuits and pasta) and difficulty with quality control resulting in unreliable availability for oth- ers (Snack Pot: Tomato and Basil). I have also been told that the strength of the Euro has made it not economically viable to import certain ranges (Aproten and Harifen). This is the up-to-date list of what is currently ACBS listed for the PKU diet with discontinuation dates for those not already stopped.
ACBS ITEMS - JUNE 2010 Discontinued Loprofin Orange Wafers - SHS Loprofin Chocolate Chip Cookies - SHS Loprofin Chocolate Creams - SHS Loprofin Sweet Biscuits - SHS Snack Pot Tomato and Basil
All Ultrapharm items are deleted except Ultra PKU Fresh Bread Ultra PKU Fresh Pizza Base
Juvela
The Juvela Company have taken their range back into their own control, but they are still being delivered via Homeward and will continue to be so if that is the method of receiving them.
New Products ProZero Drink 250ml and 1.0 litre - Vitaflo Low Protein Snax (four flavours. 12 bags in whole packet. Ready salted (1.9mg per individual bag), salt and vinegar (3.2mg), Jalapeno (5.5mg) and cheese and onion (5.1mg) FirstPlay Dietary Foods Ltd Flat Noodles (pasta) 500g FirstPlay Dietary Foods Ltd
Need a career change? NHD
dieteticJOBS.co.uk 30
NHDmag.com Aug/Sept '10 - issue 57
Eleanor has been dietitian advisor for the NSPKU for 19 years. She writes the dietary information booklet for the treatment each year and acts as a resource for any dietitian treating this group of patients. A large part of her work is in publicising the work of the charity and representing the Society at medical and parent/ patient meetings to improve all aspects of care.
Help for GPs and dietitians (on acceptable quantities of food items for PKU by age)
In order to help GPs, patients and dietitians, we have recently updated the leaflet Information for GPs about Diet and PKU. In addition to this, we have produced a guide to quantities of low protein food items which are calculated on energy requirements by age and are listed in ‘units’, i.e. a bread loaf is one unit, a packet of biscuits is one unit. As all patients are different; some like to just eat low protein bread and crackers for their main energy source whilst others like a range of items, the guide lists maximum units per month to allow for this, rather than stating maximum number of bread loaves for example. Milk substitute, protein substitute and calorie supplements, e.g. Maxijul, Polycal, are not included in this list of units per month. It is hoped that this will give the guidance the GP needs to show that the patient is not being unreasonable in their requests and will enable variety without censure. Again, this is available to download from our website.
BABY FOOD EXCHANGES JUNE 2010 The baby foods exchange list has just been up- dated and is available on our website at
www.nspku.org
EMERGENCY MATERNAL PKU HELP The list of PKU centres which will treat an emergency PKU pregnancy has been up-dated with all contact details for the dietitian, doctor and clinical nurse specialist. See
www.nspku.org
Visit
www.nspku.org for further updates
visit
www.dieteticJOBS.co.uk
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