Quetiapine is still not preventing his episodes. What a difference between Resperidone and Quetiapine, no 10/15 drives or showers. Parents know their children listen to them.

Why when we kept on begging for help with Camhs to try and manage his sleep better, because we knew it was triggering his mental health. She would not help us. He could go 3 days with know sleep.

He had a seizure after having no sleep for 3 days, or the side effect of his anti psychotic. Not due to his own medical issues as Camhs put it down too.

When he is batting with his mental health having conversations with himself, the distress crying for hours on end, the hitting out bruising his own hands. When he doesn’t eat because he is so distressed. Why does no one show up to see what we go through.

We only get an appointment when his medication is increased and he is settled for a few days for them to tell us he is looking well no sign of psychosis.

2017-2024 we are still on this mental health journey. We would not be in this situation if we had been listened to in time. Cognitive decline with the onset of psychosis. Looking at starting new medication Olanzapine.🤞

Families think of them, how it affects all of them, not just the person suffering from serious mental health issues. Started 2017, serious mental health change Dec20 roll on August 24 still trying to get the right combination of medication.

It’s like fighting a losing battle. I’m in tears here, no end in sight. Psychosis, Schizophrenia what ever you want to call it. Resperidone, didn’t help. Quetiapine didn’t work,now on 20mg of Olanzapine and there is still no sign of improvement with his mental health.

What are we all doing for rare disease complex care, we have come from a great support system 22q Clinic in Crumlin run by our son amazing Paediatrician Dr Kelleher and care coordinator Wesley Mulcahy transferring to adult care ???? Bernard Gloster Stephen Donnelly Simon Harris TD

We are not Dr’s we are just parents trying to navigate this ever changing situation, please can you care enough to support rare diseases 22q into adult hood. Bernard Gloster Simon Harris TD Stephen Donnelly

We are not dr’s. I don’t know how to read endless blood reports how to manage epilepsy, psychosis, scoliosis, Thyroid issues, kidney issues ect,every few weeks we are adding something new. Rare disease clinic for Adults. Bernard Gloster Stephen Donnelly Simon Harris TD

We are not dr’s. I don’t know how to read endless blood reports how to manage epilepsy, psychosis, scoliosis, Thyroid issues, kidney issues ect,every few weeks we are adding something new. Rare disease clinic for Adults. Dr Tom Clonan

We are not dr’s. I don’t know how to read endless blood reports how to manage epilepsy, psychosis, scoliosis, Thyroid issues, kidney issues ect,every few weeks we are adding something new. Rare disease clinic for Adults, nothing. 22qClinic for children great. Mary Lou McDonald

Falling through the cracks #MentalHealth #Schizophrenia #Psychosis #22q Mental Health Reform Ian Kelleher Mary Butler TD Social Democrats Fianna Fáil Sinn Féin Fine Gael Green Party Ireland linkedin.com/posts/the-cart…

Calling All Trinity Seanad Voters! - Vote Senator Tom CLONAN No1! Your Independent University Senator 🦮🦮

maastrichtuniversity.nl/news/improving… #22q #22q11

'My son is not there anymore': How young people with psychosis are falling through the cracks thejournal.ie/22q-psychosis-…

Healthcare Transition to Adulthood in Patients with 22q11.2 Deletion Syndrome: A Comprehensive Literature Review and Transition Framework - PubMed ⁦Jennifer Carroll MacNeill TD⁩ pubmed.ncbi.nlm.nih.gov/40223294/

Aisling McNiffe 🇵🇸 🇺🇦 🏳️‍🌈🏳️‍⚧️#Striving HSE Ireland Department of Children, Disability and Equality Inclusion Ireland Down Syndrome IRL 22Q11 Ireland AsIAm Úna Keightley Claire Cahill Amanda Coughlan Ann Brehony Hildegarde Naughton Just wait when you have to transfer with an adult with very complex needs. The adult hospitals don’t make allowances for rare disease, Autism, Mental Health, moderate learning disability. Just wait your turn, waiting room full with people, left waiting until the very end.

Aisling McNiffe 🇵🇸 🇺🇦 🏳️‍🌈🏳️‍⚧️#Striving HSE Ireland Department of Children, Disability and Equality Inclusion Ireland Down Syndrome IRL 22Q11 Ireland AsIAm Úna Keightley Claire Cahill Amanda Coughlan Ann Brehony Hildegarde Naughton Everyone doing their own thing. Nobody looking at the whole picture. Everyone giving there own medication, my son is overdosed on epileptic medication at the moment, falling everyday, speech is slurred,but I’m told to just keep increasing his medication and go to a&e if need be.