Joshua’s mental health challenges

"BRING TO THE LIGHT THAT WHICH IS IN DARKNESS" – EPHESIANS 5:11-14

It has been a very long time since I felt the need, or honestly had the time, to post an update on Josh. But, we have desperately been seeking answers regarding his mental health in recent times so I am summarizing the situation here in hopes of sharing with others that may have useful feedback for us. I also believe our loved ones will want to know what our family has been going through.

Josh has been in the throes of a mental health crisis for the past 4 months and struggles to make it through every day. He is having severe behavior & aggression issues that I can only guess are related to something physiologic. He has several extreme meltdowns daily with hours of screaming, uncontrollable crying, slamming doors, breaking things, etc. Then comes the physical aggression with pinching, grabbing, scratching, slamming of body parts in the car door, etc. This situation is unsustainable. There have been many days spent feeling desperate & helpless.

In the last few weeks Josh has knocked holes in our walls, shattered his iPad, torn pictures down, slammed countless doors, choked me with my own seatbelt while driving and other aggressive behaviors that have caused minor injuries to both me and him. Josh turned 10 on Sunday - he is already strong and only going to get bigger and stronger. What seems to give him the most sensory satisfaction is squeezing/pinching my upper arms which are constantly bruised and scratched now to the point I feel uncomfortable wearing anything sleeveless. Jen and I have taken to either constantly wearing noise cancelling headphones or escaping upstairs during Josh's tirades to lock ourselves in a room and put on loud music to distract ourselves. That is until Josh follows us and attempts to break down the door with his fists (picture the scene from The Shining without an axe). 

 

Josh's current psychiatrist in Athens has him on four different medications to get him to sleep. Sleep disruption has been a constant battle for Josh his entire life and we finally found a combination of drugs that had been working since 2019, however, we are back in a pattern of chronic sleep issues which seem to exacerbate the seizures that have picked up in the last year. I believe the increase in seizure activity is indicative of something else going on neurologically. Josh finally made it through multiple difficult diagnostic procedures including an EEG (normal) and a brain MRI on July 8th (results below).  

 

MRI results:

IMPRESSION:

1.Punctate T-2/FLAIR hyperintense foci involving right temporal white matter, corona radiata and posterior centrum semiovale, of uncertainclinical significance, may represent gliosis.

2.Otherwise normal MRI of the brain without contrast.

 

This MRI is showing some scarring and prior injury/insults to the brain. Based on birth and developmental history this is not concerning or something that needs to be followed as it is expected with traumatic birth and can be the cause of developmental delays.

Yeah... I am not understanding the MRI results or the neurologist' interpretation of them and we can't get an in-person appointment with CHOA Neurology until November. While Josh did have an emergency c-section at 37 weeks due to varying heart rate caused by his gastroschisis birth defect - I don't understand why scarring and injury to the brain would have occurred during the birthing process and also why it would not be something that is concerning or needs to be followed if it is, indeed, the cause of his developmental delay. Where are my brain experts??? Katie Prowell Anguish - I'm talking to you ;) 

Our amazing pediatrician is doing his best to help us with referrals to CHOA's Mental Health Clinic and trialing other medications (so far with little success, unfortunately). 

 

During Josh's last GI appointment on July 15th, he was incredibly angry and frustrated with being there. He was extremely upset & aggressive, then got strangely quiet & stared blankly at the ceiling. Then every bit of food or liquid came out of Josh's body in an intense trifecta of bodily fluids crashing on the hospital room floor before he started seizing. David had to hold Josh up off the ground while I got him cleaned up with the help of the hospital staff before we could lay him down to finish the seizure. It is a memory that will likely never leave me and I give major props to David who has a fairly active gag reflex that he was able to control while Josh vomited, pooped and peed all over him. 

After this dramatic seizure debacle, the GI docs' suggested we "follow-up with neurology about that". Thanks, I hadn't thought of that (insert facepalm)!

 

When Josh is not insanely upset, he can be extremely cuddly, giggly & docile. His psychiatrist recommended a long-term care facility as a potential next step if we are not able to stabilize his behavior at home which is unimaginable to us. 

 

Our brains are toast from lack of sleep and being screamed at for hours daily, our nerves are fried from the anxiety of anticipating the next meltdown and my own mental health has been desperately treading trying to keep my head above water. This season of life is H A R D, but we will keep swimming  against the current trying to get our Joshie back to his normal self.  

I will end this depressing update with some positive news - despite our intense fears that he would refuse, Josh willingly got on the bus and spent the whole first day at school today. Praise be!!