[The Egg]

My son was a football player and was seriously injured with Post Concussion Syndrome on August 25, 2013 during a game; due to "getting his bell wrung" and allowed back in the game.
During the course of the game he received a severe blow to the head by what we believe to be a knee to the head by one of his own players. After that hit, he spoke with one of the assistant coaches telling him he was dizzy.The coaches did not test him for concussion symptoms at that time. This took place in the second quarter. He does not remember anything from half time on.
The coaches did not follow protocol by testing him for concussion like symptoms and allowed him back in the game. He was tested at the end of the game, but that was already to late and the damage was done to his brain.
Needless to say, playing Right Tackle, received multiple hits on top of the initial concussion blow. Thus leading to this serious Post Concussion Syndrome.
He is under the care of a neurologist, who has stated, " This is the worst concussion" he has ever seen. They say the CT scan came back fine.
His symptoms are:
- severe headaches
- severe dizziness
- unable to walk without a walker
- needs a wheelchair most of the time
- can not stand for more than 10 seconds
- can not read and comprehend what he reads
- depression
- severely limited motor skills
- severely limited cognitive abilities

Before this football game on August 25, my son was in excellent physical shape, a honors student at Middle School in the gifted program, and represented his team as one on the captains at the coin toss of the game.
He has been unable to attend school for the past 6 months. He will not be able to attend school for the rest of the year and next year is highly questionable. He should be entering High School next year, but will be left back.
My son goes to physical therapy once a week and mainly does eye exercises. he is on anti-depressant for sleep.
It does not seems like he is getting better. Over the Christmas holidays he even got worse.
I read these stories about people getting better after 6 or 7 months. Can anyone please shed some light on what else we can do for my boy. All the doctors say is, time and rest will get him better.
Any suggestions or action plans would be greatly appreciated. God Bless.
And to all of you out there suffering, you are in my prayers.

[Mark in Idaho]

The Egg,

Welcome to NeuroTalk. I am sorry to hear of your son's struggles. My first suggestion is to get a serious assessment of his upper neck. His poor motor skills could be due to an upper neck injury that causes inflammation to his brain stem.

His problems at Christmas are to be expected. The sensory over-stimulation of Christmas is rough on a concussed brain.

I also suggest you read the information at www.tbilaw.com and www.subtlebraininjury.com. Your son was treated negligently. His school should be held responsible. I suspect he is an integral part of the line and the coaches did not want to lose a good player. He should have been pulled from the game and sent to the lockers after telling a coach he felt dizzy.

Read the sticky thread at the top called Vitamins. It has lots of good info.

What anti-depressant is he on ?
What does the PT do besides the eye exercises?

Have you provided a calm environment for him ? He needs quiet rest with minimal visual and auditory stimulation. It will help if you can find some manual activities for him to do. Building with Legos or other assembly toys may work. Pro Football players often knit or crochet to reduce stress. The manual exercise will be very good for his brain.

Don't accept his neurologist as the expert. It sounds like he is not experienced in this level of concussion symptomology. Most neuros are not very knowledgeable about concussions. They just observe the patient for serious risks and injuries.

Where do you live ? Maybe somebody can recommend a specialist.

You may be able to find a Physiatrist (Physical Medicine and Rehabilitation) who can better understand his injuries. They are often affiliated with Neuro Rehabilitation Hospitals and clinics.

Let us know anything. We have heard it all.

btw, Are you his mom or dad ?

My best to you both.

[The Egg]

Thank you Mark from Idaho for your information. We will be seeing a concussion specialist soon.

We have made a quiet stress free environment as possible. It is difficult to get a 13 year old not to watch so much tv, but he understands it is so important to take breaks and naps.

When we do go out, he uses sunglasses and ear plugs.

What worries me is that it has been 6 months and he can walk maybe 40 to 50 feet ( with the help of a walker) and then he is so dizzy and pooped. It seems to be getting worse.

Pat E cake is one of the exercises his PT wants him doing, and it is very difficult for him.

We tried to play black jack the other day....he could not do the simple addition and subtraction of the cards necessary to play. He is in the gifted program at school and before the injury was extremely intelligent.

The doctors and PT say it will just take time.

Does anyone have answers of what perhaps helped them.
What did you do to pass the time.
What else should we be doing.

[Jomar]

quiet activities - some arts and crafts maybe??
any kind of painting, clay work, carving/ hand woodworking ..

[Mark in Idaho]

I went through serious cognitive and academic struggles my sophomore year of high school. It took me over a year to get back on track. I can understand the struggle with blackjack. It has 2 challenges. One must add up the cards including translating the value of face cards and aces, then make a choice whether to take another card. That is too much to process.

You need to understand the cognitive concept of 'digit span.' It is the number of items the brain can hold and process at the same time. A one year old child has a digit span of one, as in No. At two, they have a digit span of two, yes and no. At three, three as in yes, no or maybe. This continues to increase until about third grade where the digit span levels out at 8 or so. Some more intelligent brains will continue to develop an larger digit span. I bet his digit span right now is two. I have slow times when my digit span is two. I can also have great days where my digit span is 13.

If his digit span is two, then you need to make his choices very simple. And, you need to accept this limitation as necessary while his brain heals. The brain does not heal through exercise like a muscle can. It needs rest. Once it has healed, the lost functions can be regained, often within a short period of time.

I had to retrain my math mind many times over the years. I actually increased my math SAT score from 650 to 710 after recovering but without having any math classes or instruction. This was long before SAT prep courses were available. I had taken all of the math my high school had to offer by the time I finished my sophomore year. I was able to retrain my lost math skills. 25 years later, I took the SAT my son brought home and scored 790. So, be patient. He needs time and much less TV.

Find manual activities to keep him busy. The purpose of manual activities is quite simple. His brain needs a slower pace of activities. Manual tasks limit the speed of the processing the brain needs to do. No video games. They are not manual activities.

I can understand why patty-cake is difficult. I think he may be getting pushed too fast. This can be counter to healing.

Does he like to fish ? Cast and retrieve would be a good activity. Tying flies would be good. Building models...... Maybe he could handle a remote control car. If not now, later as he recovers. These tasks may need to be short. Sometimes, ten minutes was all I could handle.

Watch the YouTube video series "You Look Great." at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be It will give you some ideas of the slow process of recovery.

He likely has had some personality changes. These can be tough as he struggles to understand why and how he is supposed to act. I lost most of my friends because they did not like my new personality.

I doubt a generic concussion specialist will be much help. Most are trained by the Computerized NeuroCognitive test companies like ImPACT and Brain Minder. They tend to be good at generating fees for diagnostics and therapies for less severe concussions but rarely see a cluster of symptoms like your son.

You need to understand there is a big difference between rehabbing someone who was in a coma and rehabbing someone who has suffered from a concussion. The PT's therapy sounds more designed for someone who was comatose. The patient who was comatose needs the brain pathways reawakened. Many of the pathways are not injured as much as they are just dormant and need to be reawakened. Your son likely has damage that needs time to heal. This means lessening the cognitive load.

TV is a big cognitive load, especially if it is in high definition and with quick action.

"The doctors and PT say it will just take time.

Does anyone have answers of what perhaps helped them.
What did you do to pass the time.
What else should we be doing. "

Time is the most important thing. Quiet rest is important. Not just quiet naps or sleep but quiet gentle activities. Set a limit of 10 minutes of screen time then do something else.

And, get his upper neck checked out by someone who really understands how to gently manipulate an upper neck to help it return to proper alignment. Icing his upper neck may be worthwhile, too. He should be very careful with head and neck posture, especially when he is sleeping or napping. I struggled with the constant need to tip my head up so I could use the near vision lens of my trifocal glasses. I must be very careful about sleep posture. btw, Most chiropractors are far too aggressive with the upper neck.

A simple test for upper neck condition is to touch the bony areas behind the ears. It they are tender to the touch, it is often muscles spasming due to an upper neck injury.

I understand your son's issues. My brother played tackle and guard and got his bell rung and neck twisted often.

You can get a pedaling system that he can use in a chair to exercise his legs. Here is a link http://www.walmart.com/ip/Carex-Pedal-Exerciser/6537516 Getting some blood flowing will be good for his recovery. He should not get winded. He should not exercise to a level that causes an increase in head ache or dizziness. This is just to gently increase blood flow throughout his body.

Please try to be patient. As troubling as his injury is, pushing for healing is counterproductive. The brain has its own time schedule. There is no way to even compare one concussion with another.

My best to you all.

[Hedgehog]

May I ask if you took legal action against the coach and his assistants?

[EsthersDoll]

I had significant trouble moving and walking and with my cognitive functioning until I was treated after being properly diagnosed as having pituitary dysfunction that was caused by the concussion I sustained.

Please read my post in the sticky at the top of the forum, you can find it on this page: http://neurotalk.psychcentral.com/thread19462-3.html

Feel free to ask any questions. I highly recommend getting all of his hormones tested ASAP, to either receive treatment or to rule deficiencies out as a cause of his symptoms.

Most doctors don't have experience with this sort of thing and my neuro, who's amazing told me it's "impossible" to damage the pituitary from a concussion but the latest research says otherwise and she has since learned more about it and told someone she sometimes learns from her patients and pointed to me.

[greenfrog]

I'm sorry to hear about your son's injury. I'm truly sympathetic.

I'm a couple of months shy of the three-year anniversary of my injury. I have mostly recovered (probably close to 90%) and my life is back to normal in many ways. I'm back to working full-time (happily and productively), I'm engaged to get married, and my fiancée and I are going to have a baby. I walk very briskly on a treadmill w/ incline or ride the stationary bike for 30+ minutes a day. I can drive, read, watch television, run errands, carry on lengthy conversations, etc. I now mostly feel pretty good.

However, my recovery was a long, slow and difficult process. I was off work completely for over a year, then started back part-time from home. A neighbour said that well into my recovery (eight, ten, 12 months in?) I looked like I was walking on eggshells. I didn't drive for a year and a half.

My point is that it does take time. First and foremost is to avoid further hits to the head or significant jarring. One way to do this is to have a mental cue (for example, to continually remind yourself to "think first" or be "head safe" or "go slow") when going about your daily activities. It really does help.

Other than that, the "bread and butter" things that have helped me the most are:

- Time

- Physical and mental rest (as much as possible, staying sub-threshold of symptoms - I know this seems impossible, but doing this as best you can)

- Keeping stress low (there are many ways to do this, and their effectiveness will depend on the individual. For me, some strategies were: a good relaxation recording to listen to daily (not too long), warm bath or shower, fresh air, quiet pleasing low-stimulation environment (I moved to the suburbs to be with my fiancée), being around loving/supportive/encouraging people (and avoiding stress-inducing people), relaxing music (for me, this was Bach), comfortable clothing, simplifying and reducing obligations with the help of loved ones)

- Significantly modifying expectations about what and how much you should be doing, short- and potentially long-term (this is related to keeping stress low). I have given up certain things (like skiing), probably for good, but this really is OK

- Consistent sleep / wake routine (not easy to maintain this, but keep trying - my sleep issues dramatically improved but it happened very, very gradually)

- Comfortable, sleep-friendly nighttime environment

- Good nutrition (no radical changes, just a consistently good diet with fresh, healthy ingredients)

- I took supplements (good multivitamin with good Bs; D3 supplement; good-quality purified fish oil; and curcumin) - not sure how much these helped, but they may have

- Only when ready (this may be after many months), gently and very gradually increasing physical and mental exertion as tolerated (only just barely testing limits and always pulling back when it gets to be too much) - I did this ever-so-gradually over months and even years

- Many people find that faith of some sort helps - this is just an observation from visiting this site - I'm not endorsing any particular belief system

Best of luck. There are good people and good suggestions on this site.

[postconcussion]

Hello,

Sorry to hear about your son's injury and situation. I was in the same boat at 6 months as far as only walking for 10 minutes, dizziness, need to sit down.

Just a few notes:

I would not encourage the pat-e-cake unless he enjoys it. Does it exhaust him?

He will get better, just think of this illustration. He is going up a flight of stairs.
Sometimes he will have to stay standing on one step or even sit back down on the step but over time he will climb the stairs. This helped me in times of setbacks and discouragement.

I would not put pressure on the time: going back to school, etc. He needs to have complete rest until healed. This will affect his life. His body and brain will know when it is time.

Hang in there, it sounds like you are a wonderful care giver!

[LauraM]

I am also sorry to hear about such lack of concern from the coaches to let your son be hurt so bad and hope he heals well. As for something to occupy his time I listen to audio books, it has to be on a very quiet setting as I am sound sensative. But I could not sit and do nothing it was making me bonkers. My doctor instructed me basically if I were not feeling well go in a dark quiet room and do NOTHING. I was not permitted to watch TV,use the computer read or use my cell phone for six months. I can now, but still have issues with all of them after a short time. I am still listening to a lot of books especially on those nights I can't sleep. At least I am in bed resting and still.

Good luck to you and let us be here to help you along. I am over a year into a into my PCS and have quite a way to go yet. I found these lovely people not long ago and I am very happy I did.