I recently had a parent ask about storming. In answering her, I realized that I don’t think I’ve ever addressed the topic as a standalone subject. I’ve edited my reply to her here.

Storming is the brain sending out ‘noise’ and seems to increase with aggravation and pain.  So the first guidance is to be very aware of what temperatures cause distress (Robert hated being cold), bowel condition (constipation and hard straining always caused storming), noise, etc.  The automatic blood pressure cuff always started a round of storming when it cycled.  We removed it.  His BP was off the charts anyway so it really served no purpose. Robert did not storm while he was in an isolation room. Within hours of being pushed out into the hallway he was bent backwards into the position he would hold until he got his first HBOT dive.

It is possible that your son is blind right now causing confusion and distress. (See article on CVI.)  Close contact and an explanation of everything going on may help.  “We’re gonna change your diaper/move you/etc.”  Warn about loud noise or changes. Sleep with your child – your smell, heartbeat, etc. are all calming and reassuring.

In hindsight I’m not convinced that any of the drugs really helped with storming except the benzos and then only because they knocked Robert out.  Of course, they are highly addictive and come with their own list of serious side effects.  But you do what you have to.  Healing the brain, which none of these do, will ultimately end the storming. Many parents have had luck with CBD as a drug alternative.

Keppra causes ‘Keppra Rage’ in adults.  Could this precipitate storming?  Be confused for storming?  So many unanswered questions and the studies will never be done on generic drugs, as there is no money in it. 

HBOT will stop the breakdown continuing in the brain, end the ‘noise’ and begin the healing process.  With this you can begin to wean meds.