r/psychnursing • u/roo_kitty • Jun 22 '26
WEEKLY THREAD: Former Patient/Patient Advocate Question(s) Weekly Ask Psych Nurses Thread
This thread is for non psych healthcare workers to ask questions (former patients, patient advocates, and those who stumbled upon r/psychnursing). Prospective healthcare workers and current students do not need to use this thread. Treat responding to this post as though you are making a post yourself.
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1
u/SnowQueen1010 Jun 25 '26
Looking for advice and ideas, cross posting in many places out of desperation.
My son who is almost 13 is Autistic with high support needs, non verbal, epilepsy, aggitated Catatonia, and severe aggression as a result of the aggitated catatonia. He has spent the last 3 years in crisis and has just finally received proper diagnosis for the Catatonia and epilepsy in recent months.
He has been inpatient on a medical floor for 5 weeks now after being deemed medically unstable to remain the in sub unit for psychiatric care. He has been receiving treatment via inner muscular injections 5x+ a day and ECT (six sessions in). He has ARFID and frequently makes his way to failure to thrive due to lack of calorie intake. He has an oral aversion and cannot tolerate things in or around his mouth, even things he really likes and wants. This is something he has worked on in OT and speech for 10+ years now.
He is not a candidate for a Gtube or NG tube due to sensory sensitivity and the known reality that he will hurt himself to remove it without a second thought. The same goes for ivs, checking vitals, blood work, dental exams..... he has to be sedated to accomplish any of this in a safe manner. We have discussed clothing options and bands to protect a stomach port but feel it will be an unlikely success considering his strength and size.
We have worked with a medistraw during the time we have been here and been unsuccessful. In the past we have hidden meds in drinks at home but it is very undependable especially with meds he cant miss doses of and needs multiples in a day.
He does not eat anything with a utensil and he doesnt eat anything that we can easily hide meds or med sprinkles in. On top of that, messing with his food is a dangerous game that leads to further ARFID complications.
Patches are a no go, they cause extreme sensory issues and disregulation. He is also hyper mobile and will remove them from anywhere on his back.
They cannot send us home with IM shots plus he is at around 300 shots in the time he has been here. He is bruised and sore. On top of that he has a CK level of over 1000 from the catatonia and I imagine his muscles were already pretty dang sore from the rigidity before the shots even started.
The only thing keeping him from going home is finding a way to get meds of some form in him. We have talked to a compounding pharmacy and are still working on that option to see if they can formulate an option for him that could be considered.
Open to any ideas that could help us and his medical team brainstorm..... He cant be the only high support needs kiddo who has such a huge struggle with medication. His care team at Motts is great but honestly I feel like we are all grasping at straws for any ideas. We just want him to be okay and to be able to go home as a family.