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PCS in 16yr old...We have seen Hell. Pls help.

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Old 06-06-2016, 11:25 AM   #1
worriedmama
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Default PCS in 16yr old...We have seen Hell. Pls help.

I found your site after months of googling...I'm hoping some light can be shed on this. My apologies if this is horribly long. It has been extremely complicated and we are at the end of our rope. We are in desperate need of help.

My son, 16, was pushed backwards by a friend in March while horsing around. He fell through some bushes and his his head on a very low (1.5ft'?) brick retaining wall. This happened on a Friday night. He did not let us know he had hit his head until Monday afternoon. Over that weekend, he did not complain of anything unusual except for headaches, which we attributed to seasonal allergies. Monday afternoon, after complaining of dizziness, confusion, nausea and headache, he told me what had happened and I took him to the ER. A PA looked him over and said he was fine. (She looked in his eyes w lights on, felt he was being overly dramatic, and offered no scans.)

Tues, headaches got worse, light & sound sensitivity, difficulty communicating...took him to pediatrician Wednesday who immediately referred us to concussion specialist & CT scan.

Thurs, concussion specialist felt concussion symptoms were unusually strong for 6 days post and upon learning my migraine history, sent us to the ER to have what specialist thought was migraine "broken" with a migraine cocktail (which includes everything from benadryl to thorazine). Son seemed to heal upon completion of cocktail, had MRI and (repeat) CT scan and sent home.

Went to beach for a week. Son still had headaches, confusion, nausea, dizziness but was getting better. Following week, began amitriptyline for insomnia and started back to school on staggered schedule...needy girlfriend broke up with him bc he was "different." STRESS.

Week after that, saw concussion spec again (Fri). Confusion had increased, and son failed 2nd ImPACT test, worse than first time. Son came out of testing room agitated and miserable, unable to make eye contact. Took him to school to meet w team and he was not himself at ALL. Stopped amitrityline, began trazodone after dr saw imPACT test results.

Sat, lost all memory of seeing friends for hours and movie. Behaved strangely, standing in odd places, just not himself. Sunday, my son lost all memory of who we were, who he was, and where we lived. I called CS and talked w after-hours nurse who said get him to ER. ER treated him w another migraine cocktail (after first checking for stroke), and undefined mental condition; post concussion syndrome. They send us home.

That week, we saw Hell. Son became tortured, paranoid, hearing voices and suicidal. My husband had to sleep in sons room with the door barricaded to ensure son wouldn't run away in the middle of the night (son was terrified he would run away to kill himself or kill us). Not knowing what was going on, or what was happening, this continued for a week. On that Sunday night, 7 days after psychosis(?) began, we took son to the ER to be admitted for inpatient psychiatric treatment.

Son was in inpatient for 7 days. Psychiatrists put him on Risperdone/Risperdal (3mg) and son has gotten better since. (Inpatient was now 5 wks ago) Son is now in outpatient psychiatric treatment, still with occasional migraines that amplify symptoms, daily auditory hallucinations (just random words over & over in pattern, nothing malicious he claims), and worsening depression.

Son is/was extremely bright, friendly, social, cross country runner, on his way to Eagle Scout, active in school events, etc. and we are terrified he will never be the same again. No prior neurological or psychiatric issues.

Psychiatrists have given us VERY little information about what or how this has happened, or how unusual it is. (Concussion specialist has since washed his hands of the case - assuming liability concerns, I'm sure.) Every day brings worry for us, and waiting for another shoe to drop.

Son is now currently on 3mg Risperdal, Buspar (anxiety med), fish oil & vitamin D and in the evening gets 5mg melatonin, combo melatonin/magnesium/triptophan OTC sleep aig, 1tsp Natural Calm magnesium and 3-4g glycine. Nightmares are out of control, he claims. He is able to roll over and go back to sleep however. We are considering putting him on a ketosis diet.

HAS ANYONE HAD THIS HAPPEN? Anyone heard of anything like this? Any support? Research? Insight? Advice? Please help us. Please.

- worriedmama
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Old 06-06-2016, 01:29 PM   #2
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Worriedmama,

Welcome to NeuroTalk. I am so sorry to hear about what your son is going through.

First, Yes, we have seen this before. A few years ago, another mother's son had a similar experience after head banging at a concert.

There are some things needed for clarification.

Is he trying to live his life with his friends. socializing, movies etc ?

Does he still have the severe memory loss or was it just temporary ?

Is he eating his normal diet ? What is it ?

Has his father observed him sleeping ? How is his breathing during sleep ?

What doses of vitamins and supplements is he taking ?

Some observations.

A concussion specialist is usually just seminar trained by the people who make the ImPACT system with maybe a bit more training if the doc develops a further interest. Most do not have the skills or experience to think outside the box.

It is not uncommon for symptoms to increase during the first 6 weeks or so after the concussion. Concussion is a process with a cascade of neurological events, not a single moment injury like a broken leg.

What can appear to be memory loss can often be just mental confusion. The brain can struggle to find and organize memories. It can be a result of poor sleep or other triggers. I have minor periods of mental confusion after nights of poor sleep.

The hallucinations may not be hallucinations but rather a hard to define condition where the mind gets stuck repeating or looping on a thought, words, song lyrics, etc. This can be a form of OCD. This can be treated with SSRI meds. Paxil (paroxetine) 60 mgs worked for me. I could get stuck looping for days. I stopped the Paxil a few years ago and now start my day with L-Theanine and 5-HTP. Paxil works at increasing serotonin levels. 5-HTP does it naturally. L-Tryptophan is a precursor to 5-HTP.

Different meds work differently for each of us. Sometimes, it takes some experimenting to find the right ones. I needed Xyprexa for about 3 months after a severe trauma.

Some suggestions for his care and diagnosis.

He may have injured his upper neck causing inflammation that disrupts vertebral blood flow to the brain. This is a subtle injury that rarely manifests any pain. Maybe just some stiffness.

It takes a gentle approach to resolve upper cervical injuries that includes disciplined sleep and rest posture. Some chiros who use gentle techniques can help. "Some" Physical Therapists can too if they avoid pursuing range of motion as a goal. Gentle traction and mobilization can do wonders to help C-1 and C-2 settle down. Icing is also an imperative. The goal is to reduce upper cervical inflammation.

He may benefit from an anti-inflammatory med such as 2-200 mgs of ibuprofen 3 times a day. My doctor says the 3 times a day is needed to keep the therapeutic levels up so inflammation does not become a roller coaster between doses. Some tolerate 1000 mgs of enteric aspirin twice a day better than ibuprofen.

If he has tender spots behind his ears at the bony spot, this suggests a subtle neck injury. These muscle spasms can contribute to head aches.

Read the Vitamins sticky. It has lots of good information. Check out the crushable ice packs recipe at the bottom. Adding B vitamins, especially 100 to 2500 mcgs of B-12 is beneficial. The anti-oxidants (C and E) are also important to a struggling brain.

Before trying the ketogenic diet, you could try an anti-inflammatory diet. The ketogenic diet requires some serious fasting to get the liver to start to release ketones. That fasting may be hard on him.

Keep him away from caffeine, MSG, artificial sweeteners, high fructose corn syrup, energy drinks, and high sugar/sugar added foods, etc.

A meat and fresh vegetables diet will likely be best. A fatty dripping hamburger provides some good amino acids and fatty acids a brain needs. Reducing carbs will increase his body's use of fats where the good brain energy is.

It may be worthwhile for him to be assessed by a NeuroPsychologist and maybe Physiatrist (Physical Medicine and Rehabilitation) affiliated with a Neuro Rehab hospital clinic where previously comatose patients are treated.

I have more but I have already overloaded you.

Please be assured that even though he may have a long road ahead, nothing suggests he will not recover from this. He may be different with some personality issues but there are ways to overcome them. I've lived with the personality changes from a concussion for 50 years. I never got the help that is available today.

My best to you and your son.
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Last edited by Mark in Idaho; 06-06-2016 at 02:07 PM.
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Old 06-06-2016, 02:00 PM   #3
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If drs are throwing many meds into his mix, I'd study up online about each one- Drugs.com | Prescription Drug Information, Interactions & Side Effects or similar sites.
Just to know about interactions and possible side effects.
Sometimes drs do tend to reach for the rx pad vs really investing more time for best long term care..

I don't know but could some of the meds be part of this big scary change?
A good question for docs..

A meds /symptoms journal might be helpful, no need to be fancy just log down when any odd changes happen related to meds or activities..

He might be better off to stay home and avoid friends and activities, noise, drama for awhile.. PC, tv, phone screen limits too. calm & quiet..so his brain can recover.
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Old 06-06-2016, 03:58 PM   #4
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Sorry you're going through this.

His story sounds similar to mine. I had mulitiple head injuries that I was trying to recover from. Then about a year and a half after my last head injury, I tried amitriptyline for the headaches (about a year ago). Soon after that, I had a psychotic break. I was hospitalized for a week and was diagnosed with schizoaffective disorder (a form of schizophrenia).

For a while, my parents and I thought it was just the amitriptyline that caused the psychosis, but with time we know, it is definitely schizoaffective disorder, though the amitriptyline can trigger psychosis earlier in some people.

The good news is that the psychotic symptoms can (and in my case, are) well-controlled when caught early. The tough part--I've learned--is living life with both brain injury and schizophrenia.

I have read several cases of people having psychotic breaks and having the diagnosis and symptoms of schizophrenia go away completely.

I should mention that Mark's vitamin regimen at the top has improved my functionality significantly, as well as high dose fish oil. Also, pushing through symptoms is a big no. Learning to moderate activity levels will be highly important for his recovery.
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Old 06-06-2016, 05:10 PM   #5
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Thank you to all who've taken the time to respond. <3

In regards to the following:

Friends/Social Life:
He has been, frankly, more social than I'd like! It exhausts him, and often after his friends leave or he comes home from an activity, he is wiped out, cranky and sullen but aware that its a Catch-22. We are working on normalcy vs recovery, and actively trying to find a balance that allows both. His focus right now is on going to his Boy Scout overnight camp to work this summer. His therapist & psychiatrist are on-board bc it's a supportive place where he can work and rest and be in a familiar structured environment. I am less convinced, but also fully aware I cannot keep him trapped in our 4 walls.

Memory Loss:
Temporary. He lost all facial recognition immediately following the ER visit when he did not remember who we were. We had to introduce him to his sisters every afternoon when they came home from school. He began by remembering complex chemistry equations with no idea how he got there, and it's all come back significantly since then.

Psychiatrist (whose description is below), has said that son received KNOWN meds that can cause psychosis in "sensitive" brains with migraine cocktail twice. No indication that it caused it, but it's a distinct possibility.

Normal Diet:
Teenage boy diet. We have taken him off all caffeine, but it's difficult to keep him away from fast food. We cook at home as much as possible, and we have been paleo in the past, so it would be easy to go back to that protocol. Risperdal has made him hungry (which for him is a huge plus, he's always been underweight), and he does grow a vegetable garden and likes veg.

Sleep:
My husband has said that for all purposes, his sleep appears normal. (He slept in his room for several weeks after son came home from inpatient.) Even with son's reports of nightmares, there's no outward appearance of them while sleeping. He & dr's are guessing he is missing out on Stage 4 of sleep and just staying in REM for hours.

Vits/Supps:
NOW Gylcine 3-4g
Natural Calm 4g magnesium
Melatonin 5mg
Omega-3 Fatty Acids (1200mg fish oil, 600mg total epa & dha)
Vitamin D 1000 i.u.
"Sweet Dreams" melatonin blend (3mg b6, 100mg mag, 1.5mg zinc, 50mg glycine, 35mg theanine, 25mg 5-HTP, 50mg GABA, 2.25mg melatonin)

As needed:
Aspirin (up to 900mg for migraine pain)

"Looping":
YES YES YES. We have been calling it "fixating." He gets stuck on an idea, regardless of what it is, and talks about it incessantly until we do it. (Which has since improved considerably.) His words he says he hears (with no consistency if it's inside or outside his head) are random words whose meanings we've been able to suss out - those words were 90% of the time used in vulnerable times for him, and he has attached to them (claiming that the voices know the words are irritating to him). He still hears them, and they are still distressing to him, but volume and frequency are not consistent. He has always been OCD'ish, since age 4 at least. It was never anything remotely like a problem, just a personality quirk - 'a place for everything, everything in its place' type.

Psychiatrists:
Met w his reg psychiatrist on accident, in a way. She has a background in head injury and considers herself a sports psychiatrist. We loved her right away. She has promised us he would be okay in about a years time, but we have tremendous difficulty believing her. We aren't even sure what okay means, much less in a year. They have not mentioned schizophrenia or any affective disorders or bipolar. (That doesn't, to me, mean it doesn't exist, just that we haven't come to that bridge yet. I would be lying if I said those diagnosis arent terrifying to me.)

Depression:
That's honestly our biggest concern at the moment. This thing seems to morph faster than we can adjust some days. We are all exhausted, but hanging on to hope.
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Old 06-06-2016, 09:14 PM   #6
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[QUOTE=worriedmama;1213459]Thank you to all who've taken the time to respond. <3

[In regards to the following:

Friends/Social Life:
He has been, frankly, more social than I'd like! It exhausts him, and often after his friends leave or he comes home from an activity, he is wiped out, cranky and sullen but aware that its a Catch-22. ]

You all have a hard decision to make. Does he want real normalcy for the future or a try at forced normalcy now. Trying to have forced normalcy now will sacrifice getting to true normalcy in the future or at least delay it. Exhaustion is his brain telling him he is doing too much.

[We are working on normalcy vs recovery, and actively trying to find a balance that allows both. ]

You can't have all of both right now. He is at a critical time in his neural maturing. He could be risking his future. There are age related maturing achievements that will only happen now with a healthy brain. Delaying his recovery could result in a failure of some maturing concepts. I know two people who went through similar challenges at this age who never developed the judgement skills and other maturities needed for a successful life.

[His focus right now is on going to his Boy Scout overnight camp to work this summer. His therapist & psychiatrist are on-board bc it's a supportive place where he can work and rest and be in a familiar structured environment. I am less convinced, but also fully aware I cannot keep him trapped in our 4 walls.]

He needs more than just a supportive place. He needs someone who can recognize when he has had too much activity. That takes special observation skills and it does not appear your son will be forthcoming to tell somebody about how his days are going if it impacts his camp days.


[Memory Loss:
Temporary. He lost all facial recognition immediately following the ER visit when he did not remember who we were. We had to introduce him to his sisters every afternoon when they came home from school. He began by remembering complex chemistry equations with no idea how he got there, and it's all come back significantly since then.

Psychiatrist (whose description is below), has said that son received KNOWN meds that can cause psychosis in "sensitive" brains with migraine cocktail twice. No indication that it caused it, but it's a distinct possibility.]

A concussed brain is known to often be sensitive to meds, especially psychoactive meds.

[Normal Diet:
Teenage boy diet. We have taken him off all caffeine, but it's difficult to keep him away from fast food. We cook at home as much as possible, and we have been paleo in the past, so it would be easy to go back to that protocol. Risperdal has made him hungry (which for him is a huge plus, he's always been underweight), and he does grow a vegetable garden and likes veg.]

Fast food usually means huge amounts of sugar and/or artificial sweeteners. He has some serious choices to make.

[Sleep:
My husband has said that for all purposes, his sleep appears normal. (He slept in his room for several weeks after son came home from inpatient.) Even with son's reports of nightmares, there's no outward appearance of them while sleeping. He & dr's are guessing he is missing out on Stage 4 of sleep and just staying in REM for hours.]

A sleep test might be worthwhile. Nightmare can indicate inadequate blood flow that will contribute to the intensity of all of his symptoms.

[Vits/Supps:
NOW Gylcine 3-4g
Natural Calm 4g magnesium
Melatonin 5mg
Omega-3 Fatty Acids (1200mg fish oil, 600mg total epa & dha)
Vitamin D 1000 i.u.
"Sweet Dreams" melatonin blend (3mg b6, 100mg mag, 1.5mg zinc, 50mg glycine, 35mg theanine, 25mg 5-HTP, 50mg GABA, 2.25mg melatonin)]

That appear to be a lot of magnesium. Did the doc say to take that much ? Natural Calm is mag citrate. Mag oxide would have him on the toilet all day. But, there are concerns that synthesized mag citrate breaks down into glutamic acid, a free glutamate. That is definitely not good for a struggling brain. 300 to 400 mgs should be all he needs. More is not always better and often more can be worse.

A blood test can reveal his mag levels. A full range blood test would be worthwhile. Thyroid (4 tests), B-12, folate, thiamine, phosphorus, niacin and some others are worthwhile at a minimum. I don't remember them all.

[As needed:
Aspirin (up to 900mg for migraine pain)]

975 mgs is a common dose (3 x 325 mgs) that can be taken twice a day. The anti-inflammatory effect is worthwhile even if he does not need the pain relief. If he is a lightweight, 2 x 325 twice a day may be enough. How much does he weigh ?

["Looping":
YES YES YES. We have been calling it "fixating." He gets stuck on an idea, regardless of what it is, and talks about it incessantly until we do it. (Which has since improved considerably.) His words he says he hears (with no consistency if it's inside or outside his head) are random words whose meanings we've been able to suss out - those words were 90% of the time used in vulnerable times for him, and he has attached to them (claiming that the voices know the words are irritating to him). He still hears them, and they are still distressing to him, but volume and frequency are not consistent. ]

"(claiming that the voices know the words are irritating to him)" Sorry, way above my pay grade.

[He has always been OCD'ish, since age 4 at least. It was never anything remotely like a problem, just a personality quirk - 'a place for everything, everything in its place' type.]

This may magnify his struggles as his brain tries to make order out of his world. The concussed brain often struggles to ignore even little 'out of order' issues.

[Psychiatrists:
Met w his reg psychiatrist on accident, in a way. She has a background in head injury and considers herself a sports psychiatrist. We loved her right away. She has promised us he would be okay in about a years time, but we have tremendous difficulty believing her. ]

Are you not involved with his psych appointments, at least for a part of the session ? My wife attended most of my psych appointments and made some excellent observations.

This 'a years time' claim is totally unfounded. Every concussion is different. After the first 6 weeks, there are no known commonalities. It is one of the most distressing things a doc can say, especially as that year's time approaches.

[We aren't even sure what okay means, much less in a year. They have not mentioned schizophrenia or any affective disorders or bipolar. (That doesn't, to me, mean it doesn't exist, just that we haven't come to that bridge yet. I would be lying if I said those diagnosis aren't terrifying to me.)]

[ Depression:
That's honestly our biggest concern at the moment. This thing seems to morph faster than we can adjust some days. We are all exhausted, but hanging on to hope.]

My biggest concern is that he appears to not want to make the temporary changes that can greatly enhance his opportunity for a good recovery. If his brain is easily fatigued and he personality responds to that fatigue, is speaks volumes. He is also at a critical point academically. Being ready for next school year is important. I lost my entire sophomore year to less than my normal grades (straight A's as a freshman to mostly B's as a sophomore. Recovered mostly for junior year but my combined GPA suffered greatly. 0.25 points, honors vs high honors and possibly top 3)

I hope you have an opportunity to influence his choices. You know what he should look like in his eyes. His time at camp will prevent your observations. Please be careful and get his B vitamins going.

My best to you.
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Old 06-06-2016, 09:20 PM   #7
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*also, neuropsychologist appt is later this month. Took forever to get.

Son & husband read over everything and agreed with all that was posted.

I also ordered b50 and 1300mg curcumin. I read vitamin sticky and what dosage is recommended for C & E? We will do that too! Ready to throw kitchen sink +++ at this. Son is such a bright, happy soul almost back to normal on the few moments a day that he feels well, before he sinks under again. We know hes in there somewhere.
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Old 06-06-2016, 10:10 PM   #8
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Mark in Idaho,

Excellent points that are well worth deep consideration. Thank you.

The normalcy vs recovery thing is one we grapple w daily. Son is in outpatient treatment akin to a school day, which is where he meets w therapist & psychiatrist. The "accidentally met her" phrase is misleading I now realize - son was assigned to a different dr and the psych we met was there filling in bc assigned dr was out. We decided then to have her be one of his regular dr's. The program has family meetings w social workers at least 1x/wk (along with his daily one on ones & group sessions) and psychiatrist calls regularly with progress updates. I do wish we were able to meet face to face with psychiatrist more regularly, but this is how the outpatient program works.

Son is deeply aware that he cannot live as though he were uninjured. He has lowered his social activity to a few times a week, which to me still feels like too much. Its a process for all of us. Convincing a socially active teenager that he cannot continue along his expectations is difficult, at best. He is realizing lately that the price may be too high, in terms of what it does to his mood & the rest of his day.

At camp, he will be home each weekend, and we have the option to do whatever we think is best, be it pull him for a week or for the rest of the calendar. (We have to anyway with a few standing appts.) The camp facilitators are aware of his limitations, have known him for many years, and the outpatient staff has been putting together a coping guide for son when things get to be too much. He has counted on this experience being part of his recovery, and to take it away has been met with opposition from both son and his psychiatric team. Your points, however, are extremely valid.

Magnesium is definitely too much. Halving dosage of Natural Calm as of tomorrow night (when he takes it next). We were told to work up to 4g but his GI is definitely being affected at 5 with the blended OTC pill.

I will discuss the option of a sleep study with his psychiatrist as well as blood work-up.

Your points about maturity development are also good ones that I had never considered. In part, because a concussion of this nature never even entered my mind, and the past few months have been so terrifying any future development beyond what was directly in front of us just hasn't even been thought of.

His academic end to sophmore year has ended well with the school district having frozen his GPA and exempting him from all school and state exams. If we need to next year, home schooling is an option. I agree, the "year" time frame is a difficult one for us to accept, seeing how progress and healing are so extremely slow. There is a part of me that wishes his dr had never said it. But the caveat was be that he may be "different" from how he was before the accident, but would be ok. Whatever the hell that means.

Thank you so much for your insight and recommendations. We will take it all into consideration.
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Old 06-06-2016, 10:40 PM   #9
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Avoid taking Aspirin or Ibuprofen because they prevent healing-
When NSAIDs make pain worse - A significant public health concern | Caring Medical

If his head hurts, he should stop what he's doing and rest.
What Physical and Cognitive Rest Really Mean After a Concussion | BrainLine.org

Pain is the body's way of alerting you that what you're doing is causing damage. The opposite is also true - if you stop said activity then the pain goes away. So that pain should not be ignored.

Consider taking it easy for the summer so his brain has a chance to recover.
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Old 06-06-2016, 10:59 PM   #10
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The aspirin/ibuprofen issue in the linked report refers to tendon and ligament injuries. It does not apply to concussion. More importantly, reducing neck inflammation allows better vertebral blood flow that enhances brain health.
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