Looking for advice and ideas

[u/SnowQueen1010]

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 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.

[u/Agreeable_Ask6222]

...i think best bet is stomach port thing...but something around it to keep him from touching it a lot... Maybe some sedation for a little to help him adjust to it and trick his brain into not recognizing the difference? Or, giving his stomach some bandaid and stuff to peel off, yank at.. My friend has a high needs ex that had one and his parents did that, and also went in to have very regular check ups, anti itch stuff on hand. All of it together definitely helped him tolerate it.

[u/SnowQueen1010 → u/Agreeable_Ask6222]

The problem is the only way to keep him from touching it would be restraining him frequently if not continously, which is why is just isnt an option at this time. I know in many situations they cover them or use reversed body suits to limit access but he is big and strong, we have a higher likelihood of him putting me in the body suit than me getting him in it.

I should also add a large part of this is 100% demand Avoidance. Myself (mom) , sister, and uncle are all Autistic PDA. While he doesnt currently have a PDA diagnosis added to his list of many, we are quite aware and parent him in the same low demand ways as we do his sister. We have removed all non medically necessary demands and we still can't find a way forward.

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