Mama,

At 16 if he misses a few things in order to heal so what...he has a lot of life ahead, making the future bright is what is important even at the cost of momentary now.

I had bad depression, anxiety, nightmares of the most frightening kind and the list goes on.

The doc who repaired my head saw me at 11 months post injury and said, " I didn't expect you to be this bad." I had so many things way wrong and I thought I was making it all up. Fortunately my wife knew I wasn't and kept me believing.

I'm sure your son will be just fine. If he pays attention, his body will signal him when he has had enough and needs to rest or even if he is ready for an activity at all during this temporary stage of life. The art of pcs is not rushing or giving in....a delicate balance that requires observation, learned understanding and as a parent saying no if necessary.

I hope this isn't rambling, some of us could write a book about the doctor unexpected crap we have endured so keeping it short is a chore.

Best wishes,

Bud

worriedmama,

1000 mgs of C and 400 iu of E is good. The B-50 does not have enough B-12. Be sure to add it. Curcumin has best potency if it is one of the concentrated forms, like C3 or another one I can't remember. Bioperine is important for curcumin absorption.

It is very important for him and even you to know that his good times are not license to try to return to normal activity levels. Recovery is best when those good times can be extended. The brain heals best when it is symptom free. Hopefully, you can help him learn to recognize when he is starting to push his good time limit. His eyes may look different. He may become irritable.

If he is reading, he may need to reread a line or if in a conversation, ask someone to repeat what they said. Basically, any time his focus or concentration has the slightest decline, stop and remove from the activity and stimulation. The more skilled he becomes at avoiding hitting his overload point, the faster he will recover.

A single event of over-doing it can undo weeks of improvement.

I don't want to scare you but my comment about the year time frame means it could easily take longer than a year. Nobody knows. But, statistics show a bell curve with a long gentle slope at time goes on. What is known is proper quiet rest and over-stimulation avoidance plays a big part in that time frame. Quiet rest means slowing down life, not sleep or napping. Proper sleep at proper times should be a goal. He should try to maintain the same wake-up time as he did during the school year.

His scout camp schedule sounds good. At least it gives you an opportunity to review him week to week.

I hope he has a good experience with those who are over-seeing him while he is away. It would be good to explain the over-stimulation observations I mentioned above to someone who will see him regularly. A simple conversation of asking how his day went and observing his ability to organize his thoughts could be a great barometer.

My best to you both.

>>1000 mgs of C and 400 iu of E is good. The B-50 does not have enough B-12.

I will get the C and E today. I had B-12 that the concussion spec had originally put him on (but inexplicably asked us to stop taking). The dosage is 3000mcg, per sublingual. Is that too much? More? Less?

I adjusted his magnesium last night and we did a nightmare-free hypnosis. He HATED the hypnosis, but I saw him listening and relaxing as the suggestions on removing/changing nightmares progressed. He woke up normal-ish for the first time in I'm-not-sure how long. We will take that.


>>It is very important for him and even you to know that his good times are not license to try to return to normal activity levels.

He has definitely begun to recognize his limitations this week. I like what you wrote about "extending the good time" when his brain is calm and quiet. It makes sense and I will pass it along.

I have often wondered if (and he has suggested as much) that when his brain is "quiet" he gets nervous. He is so terrified the psychosis will come back, when his brain is quiet it gives him time to think about it and the more he thinks, the larger the perceived threat gets. When he stays "busy," which is being outside gardening, skateboarding with a friend (never very far, always with a helmet in a park-type area across from our house), or playing minecraft with his sisters (one of the only video games he can tolerate and it was encouraged by his psychiatrist), he finds it soothing. The worst times are when there are multiple people to listen to at once, when he forces social time through a headache, or when he's already just feeling agitated. I'm sure there's more.

>> A single event of over-doing it can undo weeks of improvement.

We definitely saw that in the beginning. It was heartbreaking. Now we're almost 12 weeks out, that has improved. We all still see the need to be super careful and are fast to pull him from things that make him loopy.

(His eyes almost look like they're spinning, he might say inappropriate things, he looks like he's lost...there's a definite pattern. When it's a good time and he's paying attention again, we discuss with him why we left the store, etc. Flourescent lights can definitely be a trigger.)

>> I don't want to scare you but my comment about the year time frame means it could easily take longer than a year. Nobody knows. But, statistics show a bell curve with a long gentle slope at time goes on.

Not scared. It feels that way. But progress is progress, regardless of how slow.

>>Quiet rest means slowing down life, not sleep or napping. Proper sleep at proper times should be a goal. He should try to maintain the same wake-up time as he did during the school year.

Which is actually one of the main reasons I've allowed the continued consideration of camp. He teaches one of his favorite things, so he will be in the flow of something he loves that's naturally a very slow pace (wood carving). He will be in the same hut all day, his supervisor knows him well, and he is planning a vegetable garden this year near the hut. One of the things he's given us as a "pro" is the consistent schedule. Nothing ever changes. My husband will also be there one of the weeks with the rest of the troop.

His supervisor will also likely be the person he talks to about his day, which is one of the best scenarios. Son has never, ever (even in the depths of psychosis) had disorganized thinking or speech -- the opposite actually happened. He was wittier, better deductive thinking, and almost hyper-defined thinking/speech. He was working *so hard* to make his points and his voice heard. His physicians that knew him before the accident would remark on it, and as he has begun recovery, those symptoms have actually decreased - he's back to his normal wit/speech/thinking.

This has been so incredibly helpful -- to type this out, to get thoughtful responses -- and it's made this seem manageable for the first time. I've noticed I've relaxed more around him, having better perspective and enjoying him for who he is on any given day. That's priceless.

I had no idea head injuries could be like this. Even in sports concussion classes, which we had to take as athlete parents, this was never discussed. But there have been positives to this that we had to look for, but found. Since the accident, his friends have gotten (and are actively wearing!) helmets. They use their cell phones less around him, because he doesn't use his often anymore.

Thanks to you all.

I had to post a followup, after having spoken with his psychiatrist at length. My husband had been the main contact, so there was lots to discuss from my POV.

The most important thing is that schizophrenia is NOT the diagnosis, or near it either. That sons' current working diagnosis is Psychosis Secondary to Brain Injury and that he HAS made real progress, not just the type I've worried I'd imagined. I cannot even begin to express how relieved that made me.

Also that even the depression may be an OCD display -- he is picking things up subconsciously from partial outpatient treatment via group therapy. Dr suggested that after having seen it happen w sons behavior, and discussion w nurses, and then after discussing it w me, confirmed. Auditory hallucinations may still be around bc of OCD as well.

3000 mcgs of B-12 is OK. He probably would be fine on 1/2 that but 3000 should not hurt him.

The multiple voices at the same time should be avoided at all costs. At camp, he needs to control the voices in the room. The brain tries to track all of the voices and will overload and crash.

FYI. One of the biggest problems with PCS is over-attending. The brain tries to pay attention to too much. A healthy brain will filter out background noise, the other voices that are not important, etc. The PCS has limited filtering out capability.

So, Singing around the campfire may be a struggle. Have him prepared to run for cover. He may find that wearing foam ear plugs will help with background sounds, even extra voices.

It is important for him to have something to do during quiet times. Wood carving would be fabulous. The hands cannot move any faster than a PCS brain can think. We often recommend manual focused activities because of this. Quiet rest means engaging the brain but quietly. Practicing knots would be good. Many Boy Scout skills are manually oriented.

Minecraft may be pushing it. I'm surprised his psych who understands brain injuries would recommend it. Be aware of the look in his eyes when he plays. Limit the continuous time for each session. Turning down the sound can help.

I have hours of idle time each day. I must fill that idle time or my brain goes nuts so I keep my laptop available. I can't sit and watch a sunset. I do jig saw puzzles and quizzes when online, play solitaire/freecell/minesweeper to keep my mind occupied. Minesweeper can be a good brain stimulator with the various skill levels. YouTube has some great informational and instructional documentary videos and comedy bits. Jeff Foxworthy, Bill Engvall, Brian Regan, Brad Stine ( a thinkers comedian), and a bunch of women. Jeanne Robinson is a gas but maybe too old for him.

His talkativeness may be his meds. You won't know for sure until he starts coming off them.

PCS and stress can cause all kinds of temporary psych issues. I am extremely sensitive to emotional trauma and can dive into PTSD easily. I understand the fear he has. I was afraid to go to sleep for fear of the nightmares. His struggles are very real.

Our family therapist told us how to react when a family member is having a difficult time. First, acknowledge their struggles, then the three H's. Hugs, Hush up, Hang around. It might mean grabbing a book and sitting in the room with him as he does his mind occupying activity. He needs to not feel alone during these times.

The "He was working *so hard* to make his points and his voice heard." sounds familiar. This can signal his struggles to get those thoughts out but has a discipline to not speak until he has his thoughts together. I routinely will wait and rehearse when I want to say so it comes across sounding intelligent. This 'slow down and rehearse what you want to say' is a fabulous skill, valuable for the rest of his life even without PCS. Good for him. Encourage him with this.

At my brain injury support group, we have many who need to take time to get their words together. Society does not have patience for this but our group will sit and wait patiently. It is amazing to watch how this lets a person who would be shunned in society by their speech finally have a chance to say something. They know that if they mess up, we laugh with them, not at them. It is important to not try to finish his thoughts for him.

It sounds like he is getting good support because you appear to accept his struggles without question. Keeping your anxiety down is important as he can feed of your anxiety. As a parent, it is tough but know that things will get better and try to be patient. MANY young people who come to NT struggle because their parents refuse to accept their struggles as physiological and try to tell the son to ' Buck up and get over it' as if it is just a behavior weakness. He is fortunate to have you by his side.

Try to avoid asking how he is doing. Just try to observe and be supportive with direction if he needs some help. 'That may be enough Mine Craft for the day' or even a redirect away from the activity, 'How are your tomatoes doing ?' or 'Can you help me do xyz ?'

So, relax mom. You are moving forward and will continue to see improvements. The skills you all learn will be great for all aspects of life. Many of us come out the other side with much better life skills.

My best to you both.

SAME problem with me. I'm old, 41, no past psychiatry issues. I experienced headaches, dizziness, confusion. Even went to my dr finally 3 weeks after my car accident. Psychosis snuck up on me as to I had no clue it even existed. Inpatient 2x, rispiradone kept the psychosis coming back (I even timed it). At night right after taking it and the next morning when I woke up. So I stopped taking it and the psychosis is gone. I have seen 2 neurologists, psychiatrist, dr after dr had no clue until I spoke to someone in behavioral health services. These people have seen this happen. I'm now waiting to see a neurologist who specializes in this because being diagnosed with a mental disorder is by far easier than to actually research this crap. I'm not sure how to contact people on here because I just signed up. I would really like to talk to people about this to make people aware that ANYONE can go into psychosis.

Rg77,

The private messaging feature is disabled until you have posted enough times.

Very few on here have experienced serious psychosis. Yes, it has happened and been a serious issue for some.

Depression and anxiety are the most common issues.

When you find a thread, look at the date in the upper left of the last post. Replying to the OP, original poster, is a challenge with the older threads.

You can see other posts by a poster and see if they are still active on NT by left clicking on their screen name. WorriedMama has not posted in 3 years.

Mark,

Yes, I saw that after I posted my reply. Anyways, it's still something that could happen to anyone, which I had no idea. Until now. I'm just glad to be out of it and will try hard to make sure this is something that's a concern.

Thx

As always, the best thing to do is hyperbaric oxygen. Get him into a chamber ASAP. Do not wait. Go online and read about it.

Hyperbaric Oxygen Therapy in Traumatic Brain Injury (TBI) BIALA 213 - YouTube

As to the drugs, I wish he wasn't on so many neurotoxic ones right after a brain injury. Amitryptaline and benedryl are anticholinergic. Risperdal and thorazine cause permanent brain damage over time. As you can tell, doctors don't know much when it comes to this stuff so they just throw drugs at you.

Psychosis after TBI seems pretty rare. I feel for your situation. Had you gotten him into a hyperbaric chamber right away most of these symptoms could have been prevented.

SIS, Do you realize that WorriedMomma posted this 3 years ago and has not been on NT since?

There is NO definitive evidence the HBOT would provide the immediate benefit you claim.

I wish HBOT would do the miracles many claim.