Help needed from pediatric PT’s and OT’s! Positioning for a complex 13 month old.


Posting from Megan:

Hi folks!
I am hoping to start a brainstorm thread for a really complicated kid I have picked up.
He 13 month old boy, one of triplets – his identical brother did not survive and there was twin-to-twin transfusion resulting in my guy losing most of his frontal lobe. He is a very involved kid. The biggest concern at this point is that he needs to be held – practically all the time, even asleep – because if he is not held in a tight “clamshell” he goes into extreme extensor tone and screams and cries. He can tolerate his belly on a rigged up cushion from an OT for about 30 seconds. I have been brainstorming a list of things to try with him but would love any ideas.
His positioning when he is comfortable is sitting on mom’s leg, hips and knees flexed, spine kyphotic except cervical spine hyper extended (strangely he has pretty good head control) but this cervical posture is concerning in the long term. He hates any pressure on the back of his head that would bring his spine into better alignment.
Basically the family is looking for something that will hold him in his comfortable position without their hands.
My thoughts to try:
Full seating/positioning eval with a very skilled vendor
Stander? He would need AFOs
He is getting started with Perkins (MA school for the blind)- maybe they could build him a chair that would work??
Togrite to hold him in the clamshell on his side on floor (OT gave them a gait belt to try for this, didn’t work)
Nada chair?
They have a clamshell seat thing – maybe was some kind of stadium seat – which has been a little bit useful inside a baby hammock – but he still extends out of it. Thought about drilling holes in it for belt at key points of pelvis to keep him in it.

Any other thoughts and suggestions, things you’ve tried or found helpful for a very involved kid like this would be fantastic! Thank you!