Parents of Tipperary boy with rare disorder fear for his life
Caitriona and Rafal Pliszka in their home in Cashel, Co Tipperary, whose son suffers from ARFID. Picture: Brendan Gleeson
The parents of a young Tipperary boy with autism and a rare eating disorder are fearful for his life because he cannot access the services he needs.
Riain Pliszka from Cashel is 11-years-old. He was diagnosed with autism in 2013, at the age of two, and also has anxiety.
His mum Caitriona says that her son ate well until he was about 18 months old. However, he then developed the first signs of food restriction and sensory aversions, which over the years gave way to the diagnosis of Avoidant Restrictive Food intake disorder (ARFID).
Caitriona says: “He loved his food, especially sausages, which were his favourite, and he had loads of words, but over the next few months everything happened quite rapidly.”
She says Riain became non-communicative but is now speaking again, through the use of lámh and visuals, both at home and in school. His food refusal began from about the age of three.
He became a very ill malnourished little boy and ended up in South Tipperary general hospital where his weight was off the centile chart, and he ended up with a drip and the first insertion of a nasogastric (NG) tube.
By the age of six, Riain was in an ASD unit in a mainstream school and had to attend school using an NG tube.
Caitriona recalls: “We tried food after food after food of different types, textures, colours, but we also had to watch, and still do. The packaging must also not change. Play therapy, physiology sessions with parents and various other plans were tried but none have worked.”
She said he is not a stable weight, adding: “Without the protein drinks it would be drastically low with major implications. He is always on the lower level of the centile chart and has often fallen off the chart on weight measurements.”
His food intake remains very limited, and he has to drink three 125mls-portions of compact protein, and 200ml of a nutrient-dense drink every day.
ARFID is a condition characterised by the person avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both.
However, he has not been able to access a service which will take a holistic approach to his autism, anxiety, and ARFID diagnoses.
Caitriona says his NG tube “has been a lifesaver for us as parents, but is hard work and time-consuming and extra care and attention is required”.
He has been admitted on several occasions to pediatric wards, and Caitriona says:
"He'd often get so weak from not eating we'd have to carry him to bed or to the toilet, and his energy levels were low and still low to this day. If he had something on, he will spare his energy for that and then in the evening he's literally thrown on the sofa and weak."
She says that almost a year ago, Riain’s weight plummeted and a decision was made by his medical team that the NG tube had to stay in permanently, with tube changes when required.
She added: “We aren't in anyone's catchment area, it looks like from our side.”
His family feel they are being thrown from “pillar to post” because they cannot find out if Riain can access services through CAMHS or the Children’s Disability Network Team.
In recent weeks, the family have been informed that Riain is on a waiting list for CAMHS, but Caitriona is concerned that each passing day is one that is being lost for Riain’s health.
She said: “Kids in the UK are going blind or have organ failure and death (because of ARFID). This can be avoided and as his mum and dad, we have to fight for his needs and advocate on his behalf.
"We have a duty to care for our son and family and we will fight for him and his needs and entitlements. We won't fail our son.”
She and her husband Rafal are very grateful to the medical staff who have worked with him, particularly at Tipperary University Hospital.
His case was recently raised in the Dáil by Sinn Féin TD, Martin Browne.
A spokeswoman for the HSE said a service for children with ARFID is provided from Tallaght Hospital, Dublin. It is delivered as part of the Sequential Oral Sensory (SOS) programme, which is an evidence-based programme for children with the disorder.
She added: “Management of children with ARFID requires a collaborative working between a number of professionals and, depending on a person’s needs and level of complexity, may involve joint working between the acute hospital sector and HSE community healthcare divisions such as Primary Care, Disability, and Mental Health. Such joint working is governed by existing protocols and established Hospital Group and Community Healthcare Organisation governance structures.”
For more complex cases, local services can consult with tertiary specialists and national Feeding, Eating, Drinking and Swallowing (FEDS) services — such as those in the Central Remedial Clinic (CRC).
She said that the HSE’s national clinical programme for people with disability is currently developing national guidance to strengthen pathways to specialised services for children with disabilities. These services work in collaboration with local services centred on an individual’s needs.
She added: “The HSE does not discuss individual cases but will do so directly with a patient and/or their family.”
According to Bodywhys, the eating disorders association of Ireland, 5% of contacts to it in 2021 related to ARFID. However, the organisation noted in its 2021 report that there has been an increase in contacts regarding ARFID.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
