PCS wreaks havoc on life!
 

My 13 yr old son suffered a severe concussion on 09/29/11. Since then, our lives have been turned upside down. He has constant/every day headaches, terrible meltdowns with angry/violent mood swings, and constant lethargy. He is on 20 mg of amitriptyline (sp?), and Tylenol 3 only as needed.

Right after the accident in the ER he had a CT scan which came back clean. At the 4 week mark post accident, because of his continued and even increased symptoms, he had an MRI. It also came back not showing any skull francture, lesions, bleeding, etc.

He is only going to school for his core classes, every day from 10-2. That is still sometimes too much. The noise and fluorescent lights of school are his undoing, along with the concentration needed.

Our biggest adjustment is to his emotional meltdowns. He literally 'snaps' and becomes this person we do not know. It seems to happen if he's dealing with a particualrly bad headache or has 'overdone' it for the day...over-stimulated/tired. He will start talking in this baby talk kind of voice, and then just becomes so very hateful and mean. He will order everyone around, demand things, and if you do not do what he wants or try and combat him in any way...watch out. He has become extremely violent at times. A couple of weeks ago he demanded that his sister (age 14) get up and give him the seat on the couch and let him watch TV. She did not recogize he was "in mode" and just handled it like a normal sibling spat. He lost it completely, physically attacking her while wild-eyed and purple in the face, screaming all the while that he was "going to slash her throat, beat her with a baseball bat...." Last night at bedtime he was feeling very bad and he couldn't sleep. After about 1 hr, he walked into my room, completely off-balance physically. I led him back into his room, and he starts thrashing around saying "Im going to kill someone. Someone's going to die." The night went on and on, and needless to say, I stayed on watch and edge all night.

None of this was even remotely in his character before the accident. It is truly like Jeckyll and Hyde. Right now I am just thankful that he is a little guy and not some big sized 13 yr old.

These really bad episodes are not constant or even every day. He does have some decent days. He almost always hits some sort of wall though at the end of the day, even if he just becomes irritiable and starts the baby talk thing.

The Dr he is seeing is a Sports Medicine guy who specializes in concussions. He has been very good with him, and us as well. He has said that with the severity of his concussion, we could still be seeing and dealing with symptoms for months to come. He has suggested that if at the 3 mos mark we are still dealing with a lot of the emotional issues, it may be time to dig our heels in for the 'long haul' recovery plan and to think about getting him with a Behavioral Specialist to help him cope through the next stage of his recovery.

First and foremost, we want to help him. It is breaking our hearts to literally watch our sweet boy turn into this mean/hateful/violent person we don't know. Secondly, we are struggling mightily to make sense and keep our heads above water in this new world we've entered into. Because of his revised school schedule, our work schedules have taken a beating. Because of his issues, our home life and family evenings are completely battered. My daughter is getting the brunt of his negative attention and our lack of positive attention due to all of our concentration on him, however hard we try for that not to be the case.

I really wouldn't wish any of this on anyone, but at the same time, if anyone out there has/is dealing with a similar situation, it woud be nice to hear from you.

could it be the amitriptyline?? did you read side effects of that med? From what everyone on here says it makes them very tired at night...is he normally sleeping well at night?

Im assuming he hit the front of his head....it sounds like he has a frontal injury. Im so sorry you are going through all this. My first thought after reading your post is that something is sending him over the edge during his day. Is there any possibility to take him out of school? Im getting anxiety jsut thinking about him walking in the hallway in between classes. There is so much stimulation in a school setting and need for concentration. I cant imagine he is comfortable for those 4 hours and it is a sign that his brain just cant handle it.

I have a close friend who was a senior in high school and was pulled out for 5 months due to her concussion. It was too dangerous for her to be there with the amount of stimuli and need for attention, concentration, planning, etc. These executive functions were not ready for that type of environment. She did graduate, but will be taking a year off before attending college because she wants to be fully recovered before attempting to learn anything new.

Im wishing you the best of luck. Praying that his symptoms lessen and that his anger and impulse control return soon to the old him.

Have you thought about seeing a psychiatrist? I know many people are reluctant to try anti-anxiety meds or mood stablizers. However, dealing with some similar issues myself, I would be completely unstable right now without them.

Post accident, if I over do it or am tired, I feel like I'm going to snap. I have said some really hurtful things and have been very close to getting physically aggressive a few times. (And believe me, this is SO not what I am normally like. I was working as a behavioral therapist for aggressive children before this, and had to have a TON of patience to do my job. I had no problem keeping my cool for extended periods of time, despite challenging situations and behaviors.)

Now there are times when if feeling symptomatic, it's very hard for me to have any patience. I can't imagine feeling this way at such a young age, without the experiences of my life to back me up to try and keep my cool.

This was a daily struggle for me until:

1) I slowed my life down to a pace that wasn't overwhelming me. This meant no work, and no Grad school. Perhaps your son needs to back off the 4 hours aday. Is there anyway he could do his work from home so he could spread it out over the day and take breaks? Or perhaps only do part of the 4 hours each day? I know you are worried about his education, but you may be prolonging his recovery majorally.

2) I went to a psychiatrist recommended by my dr, (also in sports medicine). I was put on Effexor daily and ativan as needed. This took me from feeling like a raging made person who felt like they were extreme pmsing 24/7 to someome who only has a mild outburst here or there. I've learned what my triggers are and have used the ativan to prevent even these. I maybe feel pushed to the edge now once every two weeks, rather than everyday, all day and the ativan helps calm me down to reel me back in when this does occur.

I feel for your child. It is an awful place to be, and it really is something you have no control over. As I explained to my boyfriends mother, it is seriously like having the most intense PMS I've ever had. I feel awful after I explode on someone. But when it happens, I really CAN'T stop myself. You just feel so out of control. Like I said, the above two things were really what helped me get my control back.

Hope this helps and your son is continuing to make great strides in recovery!

Have you taken him to a neuropsychiatrist? Or the behavioral specialists? He may need a different or additional med. He needs a thorough evaluation.

I remember being very over-reactive to others and to very minor issues. I was miserable inside. I was the same age.

It sounds like he is having seizure like events.

Sports medicine doctors who work with concussion often are more focused on getting an athlete back in the game. He needs more help than the sports doc can provide.

At his age, his brain and body are going through some serious changes, hormonally and else wise. He needs help getting through this time.

As nightnurse said, he needs time off from school. It will be much better for him to get better then catch up than to do mediocre work and be at risk for behavioral issues.

He may even benefit from a stay in a comprehensive rehab hospital/center with all of the disciplines of care. A team approach to his care may do wonders. The availability to quick acting meds may also be important.

I say this because I remember how volatile I was during this time. My family was moving from New Hampshire to San Jose with 6 kids including a 6 month old and a 30 month old. I was very close to going over the edge. I don't know how we all made it through that time. My mother has commented how my personality changed drastically. I was 12.

I hope you can find the help he needs.

My best to your whole family.

He had all of these symptoms before starting the medication. Yes, the rx does make you tired, which is why Dr. has him take it right before bedtime. But his overall lack of energy has been the same, before and after the rx.

Yes, the front right side. We really are starting to think that taking him out of school may be what is needed for him to heal. You are right, all of the stimulation that is associated with school is just too much, and I believe every day works kind of like a set back to his brain.

I very much appreciate your kind words and thougts/prayers.

Thank you for all of your input! The amitriptilyne is an 'old school' anti-depressant, so it does have mild mood stabilizers in it. We are not opposed to having him see a psychiatrist and/or try some more advanced rx's. I guess we are/have been just hoping that he would 'turn a corner' before we had to consider taking that next step. We honestly never imagined the long haul of recovery we were in for.

We are seriously considering and realizing that it may come to pulling him out of school. Again, had just been hoping we didn't have to take that step. This is quite the learning curve for us, and it has really set us on our heels a bit.

I so much appreciate your feedback, and will definately be taking it all into consideration. Thank you for your time and well wishes!

Hi, I'm a 'frustrated momma' too...my son had multiple concussions and then finally, April 10, 2010, had a car accident in which he shattered his forehead, damaging his frontal lobe.
My son has some of the same issues...I hate to say this but I do think you should be looking at this as a new norm. I agree with the others that say the Sports Med doc isn't enough...I would start by getting a neuropsych work-up, so you know what your dealing with and how to help.
I wonder, is he self-aware of behavior? Does he understand what has happened to his brain and what he is doing? My son was 18 at the time if his major accident...there are days that he is very self-aware and admits he has a problem and needs help. Then there are days that he is insistent that he is perfectly normal and doesn't need help.
Good luck...I'll be praying for you and your fam.

I agree, we need to get a neuropsych work-up. In terms of his self awareness-- he is and he isn't. When he has his very volatile episodes and I talk to him about it later, he will say he does remember being very angry, but he never remembers the details or the extent of his actions. Most of the time, when he's just mildly agitated or frustrated, everything is everyone else's fault, never his. Everyone is out to get him. Nobody cares about him, etc., etc. I do understand this is not rational thought, but it hurts just the same. We have turned our whole house upside down to accomodate and try to help him, it's ALWAYS all about him!

I am very sorry for all you and your family have been through. I as well will keep you and yours in my thoughts and prayers. Thank you for yours~

Thank you for all of your insight and suggestions. No, as yet he has not been to a specialist. We have though come to the conclusion that we need to take that as our next step. I am taking alot of your suggestions to heart and praying over the right course of action. Thank you for your thoughts and prayers.

My research says that he should not be mixing the amitriptyline and codeine. The Tylenol 3's should be stopped 4 hours before his amitriptyline dose is taken and not taken again until 8 to 12 hours after the last amitriptyline dose.

If his doctor has OK'ed him to take aspirin, he can take a maximum dose of aspirin and Tylenol together. They are about as good at pain relief as the Tylenol 3's. I was taught this trick by my doctor. I use it for my worst head aches.

He needs to take a break from the Tylenol from time to time, at least 12 hours or more. Tylenol is rough on the liver.

not sure if this will help, but
 

I'm someone that has been struggling on and off with PCS issues for almost 28 years now. As for the number of concussions I have had it is in the double digits (mostly all sports related). I am almost 36 yrs old and was told by my neuro doc that I must avoid any bump to the head even as something like bumping it a shelf. I don't even have to hit my head anymore. Any sudden motion or the snap of the neck could have the same impact. Simple tap in a vehicle accident would kill me. There is so much more information out there now versus years past. This will help so many young people now.

As for the mood changes that are occurring with your son, they may not be all in the physical sense. The emotional effect that he may be going through might include the whole sense of not feeling like himself. The inability to express that he knows he is not like himself but not understanding why. It is am extreme sense of helplessness as like a dementia patient.
There had been moments I struggled with frustrations of memory loss and delayed thinking processes and not understanding why I was feeling the way that I was. If you consider someone that all of sudden ends up in a wheel chair the emotional roller coaster that they go through coping with the change or limitation of the moment. When it concerns your brain you can't think straight and you don't understand and even if someone explains it to you there is great difficulty in retaining the information.
Along with the emotional side effects your son could be going through hormonal or sleep deprivation issues. Only in the last 2 years have I learned that my fatigue that I struggled with for years was actually damage in the area of my brain that controls sleep and wakefulness. I was sleeping 18 hours a day and struggling to function. Even though I slept that many hours in my condition my brain would registered that I had only slept 2 hours so over time my organs were shutting down. Proper REM cycles are important to the overall health of being able to heal oneself. Even though your son maybe physically sleeping it may not be the proper sleep cycles that he requires. Sleep deprivation can create tons of issues. He may benefit from a sleep test to see if there are any abnormalities. Sleep issues like insomnia is a very common issue for PCS. Sleep/hormones can increase headache problems too.
As for hormonal changes it may be wise to see an endocrinologist for any options of hormonal imbalance. Thyroid problems can occur with head injuries too.
There are so many areas of the body that it can effect beyond the brain. Like just this week I learned that my constant muscle tension is a lasting effect from my head injuries. Who knew that my lack of REM cycles that my body can't repair itself normally.
So make sure you notice even the smallest of changes because it could help him in the long run. I had issues for a long time that I didn't understand and didn't realize they were symptoms.

mickeymouse,

Welcome to NeuroTalk. Sounds like you have been living with PCS since you were 8 years old. We probably have a lot in common. I was first concussed at 10 years old in 1965. Had 14 concussions since than. I can concuss my brain shaking my head "No." Ten of those 14 concussions would not be considered concussions by a doctor. But, those of us with sensitive brains know better.

Yes, the sleep issues can be a contributing factor. The neurons can only heal during REM sleep.

FrustratedMomma, As MM said, watch his sleep. If he does not maintain normal breathing, this can easily be a big factor in his volatility and fatigue. My breathing problems are due to poor neck position. My wife can predict the kind of day I will have by seeing how I am breathing at night.

It is just one factor but a big factor that can be corrected.

FrustratedMomma, take him out of school, and make the school system live up to their obligation to educate him anyway by providing a home tutor. He is not capable of going to school for medical reasons, they HAVE to supply what he needs. At this point, it would only be for an hour or so a day anyway, to help him with what he needs, and he could work on the rest in little slots throughout the day. It can only help to take him out of the horribly overstimulating school environment.

I was 47 when I was in an auto-accident. I had a great career, wonderful and active life and had it together mentally and emotionally. Felt like I was on top of my game and on top of the world.

I'm 50 now. I can't even begin to imagine having to deal with a TBI as a young person, particularly a teen.

The stress, depression, anger and frustration is so difficult to deal with rationally as a mature adult. To live with it as a young person has to feel so much more magnified.

Outside support/counseling could be of benefit...But your support for your child is one of the best things for them, even if unspoken by them, you're their safe haven.

Hoping the best for all moms and dads caring for a child with this type of injury...Treading where angels fear to go. Best to all.

Input needed please....! I requested a referral from the Dr he has been seeing to a neuropsychiatrist. When I got on the phone with the referred Dr.'s office, I found out the Dr. is actually a sport and performance neuropsychologist. After many questions to the front desk, the gal connected me with the Dr himself. I spent 15 min on the phone with him. I told him that I thought my son actually needed a neuropsychiatrist, as his injury/recovery is not sports related, and many medical issues seem to be involved. I said that I really didn't want to waste our or his time by starting with him if he was just going to need to refer us elsewhere. He told me that there really is no such thing as a neuropsychiatrist (??!!). He said that the neuropsychologists, like himself, would do a very time-consuming, detailed assessment, which is what is needed to find out where his issues are exactly. He said there really isn't a 'one-stop' fit. If an EEG and/or meds are needed, he would refer to a neurologist. If behavioral management needed, he would refer to a psychiatrist. Is this right?? My gut tells me that this Dr. is not the solution for him.

Frustrated Mamma-

Not knowing anything about the dr or his credentials/methods, I can tell you what my experience has been.

I was referred to a neurologist two weeks in by my primary care. 3 months later, I wasn't any better, and kept being told go home and rest (which is VERY important, don't get me wrong). However I continued to be plagued by dizziness, nasuea, migraines, neck pain, extreme fatigue, emotional outburst, memory issues, etc. When I started having trouble regulating body temperature, the neurologist said, it was all in my head and that my symptoms were no longer neurological. Really? all of the above symptoms are "just in my head"??? I immediately decided I did not want him continuing my care.

A few acquaitances with children who play sports suggested a local concussion clinic for sports medicine. I too said, it's not a sports related injury. However, I soon found out that the treat many people who have concussion, who are not related to sports at all. For me, it has been a great fit. He did the neuropsych evaluation and a physical exam. From the results he referred me to: Vestibular therapy (for balance); physical therapy for my neck; vision therapy, (I was unable to get my eyes to focus on anything closer than 2 feet from my face.). He also referred me to a phsyical medicine and rehab dr who put me on meds for sleep and the headaches. I also see a psychiatrist for the emotional rollercoaster.

So as this person told you, that is what my Dr. did. He has been great, and given me hope. I am now actively engaged in all the various therapies and am making progress. So for me, choosing the sports medicine doctor was a life changer.

However, as a mother if he gave you the vibe that he wasn't going to be a good fit for your child, then by all means follow your gut! If you have any questions about my experience, let me know. Hope this helps!

Frustrated,

Google neuropsychiatrist. You will find lots of information about this subspecialty that will sound like what your son needs.

A neuro-psychologist may be able to help but they are not medical doctors with the deeper understanding of the physiology of the brain and how nervous system injuries and dysfunctions can effect the rest of the body.

As smilin said, some do a good job of referring. Others try to keep the patient in their own practice. A good Neuro-Psychological Assessment (NPA)would be worthwhile for the issues it can identify and address. They can become very expensive. Check with your insurance if costs are a factor.

Also, the specialist (physiatrist) usually listed as a Physical Medicine and Rehabilitation doctor can be helpful. It might be the specialty to use as the center point of the rest of your son's care.

Your insurance company may have a medical advice/help line that can direct you to finding the best doctor to coordinate referrals and treatment. Your son needs a team of specialists to work together.