The Second National Children’s CNS Seminar was held in the AMNCH Auditorium, Tallaght Hospital on Thursday 25th May 2017. The theme of the day was “Children’s Specialist Nursing – A Changing Landscape”. The Metabolic Nurse Specialists (Celine Stenson and Maria O’Regan) won first prize for their poster presentation on the day. The title of their […]
Patient and Family News
A New Initiative is Being Piloted by the SSIEM
Patient organisations and support groups who represent more than 50 families with a rare IEM are invited to apply for modest financial support for their events or parent/carer projects. This is a one-off donation and not a grant. Funds will be awarded twice a year, the first closing date is 20th April 2017. Please […]
Important change in Lucozade recipe
Lucozade drinks are changing their recipe to reduce the sugar content by 50%. Aspartame will be used instead which is contraindicated for all PKU and Tyrosinaemia patients. The change in sugar content will also effect patients who use Lucozade as part of their unwell plan or management for hypoglycaemia. Please note there will not be a […]
I kept thinking: ‘is my son going to die when he is 11?’
“All I kept thinking was ‘is my son going to die when he is 11?’.” Sharon Byrne remembers the fear she felt when she heard her son’s diagnosis of a rare degenerative genetic disorder when he was just two years old. Sharon, who lives in Lucan, Co Dublin, said Karl (Swaine), who was her first child, […]
BraveBuds Challenge!
Over the next year, we want you to challenge your taste buds with a variety of fruits and vegetables. Each month we will post a new fruit or veggie for you to try and post a short blog with interesting facts, colouring pictures and recipes BraveBuds Challenge June is Suzy the Strawberry May is Piper the […]
Low Protein Living Weekend 2017
Nutricia are holding a Low Protein Living Weekend on 4th & 5th March in the Newpark Hotel, Kilkenny with a super hero theme!! Dr. Aoife Brinkley, Clinical Psychologist and Orla Purcell, Senior Dietitian from NCIMD will be speaking at the weekend. Please see attached for more information and registration details – LPLW 2017 Save the Date
Recent PKU Conferences
Members of the multidisciplinary team from the NCIMD attended the European PKU Symposium in Amsterdam. A feedback session was held for all staff earlier this month to update them on the highlights from the conference. The ESPKU was hosted in Dublin with support from the PKU society of Ireland, from the 4th to the 6th […]
New European PKU Guidelines
We are eagerly awaiting the publication of the new European PKU Guidelines which are due for release next year. We will be reviewing these guidelines as a team and how they can be implemented in Ireland. We will keep you updated on any further developments in relation to this.
Brains and Bones visit PKU clinic!
As part of Nutricia’s Anamix Club, Brains and Bones came to visit our PKU clinic recently. They met with some of our boys and girls and explained how their synthetic protein works in their body and why it is important. We also had a Halloween cookery demonstration with lots of scary treats and new cooking […]
Low Protein Halloween Event
Nutricia will be hosting a Halloween low protein party and cookery workshop on Wednesday, 26 October at 10am in NCIMD. Please contact Nutricia for further information. Please click on the link for more details Halloween cookery TS 26 10 16