Josiah wears a helmet 24/7.  He has 5 different ones. Two are soft helmets to be worn at bedtime. Three are hard shell helmets, some with face guards to keep him from punching himself.  Without a helmet, Josiah punches his head, cheeks or chin constantly.  It seems to be almost a reflex he can’t control.

We work on ‘cool hands’ to encourage Josiah to put his hands in his pockets and keep them there for a bit.  We use a weighted vest, wrist weights, compression tubes, and gel padded gloves throughout his day to keep him safe from himself.

His quality of life since September 2017 has steadily declined.  We’ve gotten to a better place the past few months (as of April 2018) but without protective supports in place Josiah would self harm continuously.

He was so self injurious he was hospitalized 3 times in a few months, had multiple GI clean-outs, an MRI, a CT scan, an abdominal ultrasound, boat loads of x-rays and countless vials of blood drawn.

We were told by his GI specialist he needed either daily enemas, botox injections in his rectum or a cecostomy button.

We were told by a psychiatrist the best placement for Josiah would be in a psychiatric hospital for the short term so they could wean him off all his meds, figure out which ones would be most beneficial, then slowly add meds back on to hopefully decrease challenging behaviors.

He thinks in a few years Josiah will be too combative and difficult to handle at home.  The best long term outcome for him would be a permanent placement in an adult psychiatric hospital.

He offered  a prescription drug we could use that has had limited success with certain populations like Josiah however there were no guarantees it would work for him. I did some research.  It’s primarily used for drug addicts and alcoholics to wean them from their addictions.

We were told by an auto immune specialist Josiah has auto immune encephalitis and left unchecked, he would die.  He said, “Your son’s brain is on fire and he needs help now!” $2,000 later with no improvement, we learned from a different auto immune specialist Josiah most certainly does not have auto immune encephalitis.  This Dr combed through Josiah’s medical records from Birth through age 16 and spent 4-5 hours with Rick and me asking  probing questions to get a clearer picture of Josiah.  He was attentive, kind and compassionate but had nothing to offer in the way of a diagnosis or treatment plan.

It was suggested to us by one of Josiah’s amazing caregivers reducing Josiah’s daily dose of Miralax from 6 servings down to 3 might be beneficial. She suggested adding prunes to each meal and a fiber rich smoothie every morning along with eliminating oatmeal (his favorite breakfast option).

Things began to improve ONLY after we implemented her ideas.

However, Josiah’s quality of life is not what it could be.  Our primary focus at this point is  keeping him from being a danger to himself and others.  I shudder to think what life would be like for him if all his protective supports were removed.

This can’t be as good as it gets for Josiah; a life with a permanent helmet, constantly seeking the security and comfort of a compression tube.

So, moving on past specialists and their theories, we are starting TODAY on natural supplemental products.  God is in control.  I trust HIS plan.  I have FAITH there is a purpose here and I pray Josiah is able to regain some ‘normalcy’ in his life.

I’ll keep you posted.