Hi, everyone! I have been reading this site for awhile but just now joined.

My daughter received a concussion on August 3, 2009. Prior to the concussion she was a three-sport athlete in high school (volleyball, basketball and track), a wakeboarder and snowboarder.

Her worst symptoms really didn't show up for 7-10 days. Thankfully her coaches and the athletic director were alert and noticed that things weren't right with her even as her father and I were thinking it was no big deal. They administered an impact test and would not let her participate until she could pass. Without impact test we would have allowed her to play and I can't even imagine what might have happened. She had 7 days symptom-free in early October and was ready to go back to practice on a slow, regulated basis. Stubborn, anxious, competitive young lady that she is ran sprints instead and ended up with gigantic set back. She has missed both volleyball and basketball seasons. She is still hoping to participate in track this spring, but I don't know if that's going to happen.

Symptoms: Headaches (still daily but lessening now in severity, frequency, and duration), nausea (lasted for about 4 months), inability to read (3 months), lightheadedness (continues occassionally), neck strain (resolved), eye twitches (resolved), ear popping/pressure (resolved); concentration/memory (improving gradually); light/sound sensitivity (resolved).

Medication: Amitriptalyne 20 mg. daily. She reduced from 30 mg about ten days ago and experienced five days of worsening symptoms then sprang back. The medicine was causing some heart palpitations, so she had to choose between "toughing out" some symptoms or dealing with heart palpitations. Those seem to have disappeared on 20 mg.

Tests: MRI (showed "changes consistant with injury" but no bleeds thank God); EKG (abnormal, but follow-up echo showed no abnormalities or malfunctions); visual evoked response (um...something like that...it's a test that measures communication between eyes and brain...showed a slower response than expected but only in the thousandths of a second).

Postives: She is slowly increasing her exercise (up to 13 minutes on eliptical as opposed to 2 minutes when she started) and is starting a yoga class tonight. She has learned a lot about having balance in her life through this experience (i.e. there is life outside of sports). She has also learned who her real friends are.

Negatives: Major stress with medical tests (docs had to rule out MS and heart problems). Boredom!!! Holy cow...what do you do when you're 15, can't read, can't be on computer, can't watch too much TV, have light and sound sensitivity, etc???

Highest Recommendation: I realize we are not through this yet, and we are probably in no way qualified to give a recommendation, but the best person we talked to was a psychologist. By pure accident we met a psychologist who treats college athletes who have had concussions. She was fantastic in doing a depression assessment (negative, thank God again), in helping us to get accommodations at school, and in helping my daughter deal with the loss of her athletics, at least for now.

Glad to be here, welcome any advice, willing to comiserate with any other mom's out there struggling with trying to figure it all out.

I am sorry to hear of your daughters struggles.

You have had an interesting set of diagnostics. It is rare for an MRI to show any evidence of injury from a concussion. You must have a very specialized radiologist reading the films.

Don't over simplify the Visual Evoked Potentials. You said <visual evoked response (um...something like that...it's a test that measures communication between eyes and brain...showed a slower response than expected but only in the thousandths of a second).>

Those thousandths of a second can be a lifetime in brain cells that fire at up to 100 times per second. A five thousandths difference can be a slow down of 50%. This 'off timing' can interfere with the ability for the receiving brain cells to properly understand the information sent from the injured brain cells.

I have both a visual and auditory processing slow down, as much as 74%. My neurologist said that part of my brain is working at 25% power.

Life can appear to her to be going too fast. I dealt with this problem early in my recovery. There would be times when it appeared that the world was in hyper-speed. I have learned that I need to slow down my scan rate. I can't move my field of vision too fast or I will get confused. Also, I need to not look outside the car too close. If I stay focused on farther off objects, I do much better.

I do not drive except in rare quiet road situations. A rehab clinic tried to get me driving again. If there were not cars zooming past, I was able to tolerate the task. Once I got to a congested area where the cars and other objects were much closer to the car, I quickly overloaded. I was trying to drive in a normal passenger sedan. I notice that I do much better in large SUV's that have a higher seat height above the road. This gets me farther from the majority of the vehicles and other objects that are moving past my field of vision, especially the road markings.

Your daughter will likely benefit from learning to close her eyes at moments of confusion. Have her try listening for comprehension with her eyes closed. I bet it improves her listening comprehension.

I would advise being very conservative with the ImPACT Test. It does not test for the brain's ability to tolerate another impact. It is more useful at determining if the concussion symptoms will increase her risk of another impact due to poor reaction times, balance, and other mental performance issues.

If she is adamant about playing sports, try to get her to wear a Styrofoam helmet. Not one with a rigid plastic outer shell. They do not absorb the minor impacts as well. She needs a helmet that will deform easily. Her brain may be sensitive to very minor G forces that a hard shell helmet will transmit readily. There are some full coverage bicycle helmets that have a Styrofoam construction with only a thin flexible outer covering.

Her decompensation could have been from two reasons. She may have increased her pulse and blood pressure too high, or she may have just jogged her brain too much by the impact of her foot plant. I would suggest the latter was her cause.

An easy way to tell if the brain is receiving an impact from footsteps is to put in foam ear plugs. This will make the impacts very noticeable in the ears. There are some shoes that greatly reduce the impact from a foot plant. She can also try to learn a smoother running gait. But running should be a while off still. An elliptical machine does not have the impacting so it should be easier to tolerate.

She will need to be very careful with yoga. Positions where her head is lower that the rest of her body can be problematic. Learning to relax better will be good.

Regarding concentration and memory. Some of her memory issues are tied to her visual processing slowdown. It may help if she uses a multi-sensory approach to memory tasks. This means she sees, hears, and touches the information. See, Listen and/or repeat out loud, and write down. This creates more reference indexes for her brain to retrieve the information that was stored via the different sensory systems.

When she feels her mind wandering, mark her place and take a short break. It can be just a minute or much longer. Whatever she learns works best. You may be able to help her by observing her facial expressions. If you see her eyes start to dart around or look glassy eyed, she needs a break. I tend to close my eyes when I am getting overloaded.

There is a trick to reading with a visual problem. Try making a reading marker that is a piece of paper with a horizontal slit in it. It should show just one line of type, or maybe two. This reduces the other visual information from overloading her brain.

On the computer, she may be able to type out ideas on a blank Word document. It would be helpful if she wrote a journal of what she can remember from her past since the concussion. Noting her symptoms by date will help her see improvement.

You can also put such a journal together. Note what she has accomplished today that she struggled with yesterday. This is for a future reference or for doctors to see, not for her to use as a score card.

Also, try to minimize comments about how she used to be or how you hope she will recover. Believe me, she does not go a second without knowing these ideas internally. The best thing is to just be there for her as she needs you. If you can help her get some schedule to her day, that may help her feel normal. Just don't press the issue.

I get great value form my computer. I use it as my immediate and short term memory. I will forget what I am saying if I try to talk 'off the cuff." If I type out my thoughts, I can review what I just typed to refresh my memory of what I was saying. If I need to prepare to tell somebody something, such as a meeting with the doctor, it helps if I type out my thoughts first. As I edit and make my thoughts more understandable, I also make them more understandable to me.

Use a white board for her memory. I have one on the refrigerator. My wife will note something for me or sometimes I will remember to write down a note to myself. It needs to be in a place where I will see it routinely. I forget to look at notes in my pocket. If she has any habits of using a day timer, help her remember to put things down in it. My wife keeps her day timer for me. I have been able to develop enough skill to tell her to note a specific event. If I try to do it myself, I often will forget while I look for my note pad.

Have you downloaded and printed out Dr Glen Johnson's TBI Guide yet? It is at www.tbiguide.com It is the best reference available.

I hope this helps. If I have repeated myself from a different thread, that is just a symptom of my injury.

My best to you and your daughter.

Hugs

Hi and welcome to our little brain boo boo club.

I'm sorry about your daughter's injury, but I'm glad she's got such a proactive parent.

Mark has done an excellent job covering most of the major PCS issues and coping strategies. The only thing I would add is to make sure that your daughter gets a neuro-psychological exam. The neuro-psych is the best way to access how the injury is actually playing out in terms of real world functioning. Very specialized scans might reveal some of the damage, but they can't tell you how it's effecting your daughter. A neuro-psych is an excellent tool for helping to target cognitive therapy.

Welcome to the board. I am also a mother of a 15 year old. My daughter received her concussion back on October. She's been out of school now 3.5 months. She is still experiencing many of the same symptoms - headaches, fatigue, memory, noise/light sensitivity, anxiety and major sleep distrubances. Sleep being our biggest issue.

My advice would be patient, don't rush things and continue to be a great proactice mom!

Thank you so much for your thoughtful response.

The neuro opthamologist really dismissed the visual evoked potential results. I will have her try closing her eyes, multiple forms of input, and the trick of reading with only one line visible. Does that eventually heal?

As for how we discuss her recovery...At first I would say things like, "Oh, you'll be back on the court in no time" and I asked her how she was feeling every five minutes. But I've learned to just treat her like I did before all this happened and let things unfold as they will. If she mentions something I respond as calmly as possible, regardless of how much I might be panicking on the inside. Hard to remain calm when your child says, "you know, I really can't read anymore". I'm not going to lie...I've had my moments of denial and sheer terror. I have had to go back a few years in terms of monitoring her bedtime, her nutrition, scheduling, etc. It's tough to balance things without being too over-involved.

I like your idea of ear plugs for determining if foot impacts are jarring her head. I've noticed other things that I think might be telling me the same things, for example how quickly she runs up the stairs now as opposed to a month or two months ago (well now she runs, before she walked) and how much she moves her head around or rolls her eyes when she's telling me stories about her day.

I struggle with the journal. I've been keeping one for her since the injury, but we don't really talk about it. As you said, I don't want her to start keeping score or obsessing about every symptom. As an "insider" do you think I should share it with her? She knows I'm doing it, she just has shown no interest in looking at it. I just jot down if she mentions a symptom or not.

As for sports, she probably will not play basketball again, or pole vault for goodness sake, and I think she's starting to come to terms with that. Volleyball is questionable...she would really love to run again. We'll see what happens. We aren't concerned with the Impact Test anymore, but it was an invaluable tool in helping us and her coaches to realize that she had a concussion.

She's always been one to let her mind wander (she's the blah, blah, blah...oh look a bird! blah, blah type) so as bad as this sounds it's kind of hard to tell what's a deficit and what is normal for her in terms of concentration. I will look around on here for more info on the neuro cognitive test.

Thanks again.

Here's some info I posted for another member a few months age. I hope you find it helpful. I would add that you should make sure that the person doing the test has loads of experience and is an actual neuro-psychologist. This is not a job for a GP, regular psychologist or, God forbid, school therapist.

The neuro-psych is painless, but exhausting.

You'll meet with your neuro-psychologist and do a series of tests (verbal, written, visual, motor skills) that are designed to see how your brain is actually functioning.

In advance of your appointment, he/she will want all of your medical records, educational transcripts and letters from employers and friends to try and get a clear picture of pre-morbid you that can serve as a baseline and determine which tests would be most appropriate.

You will also have a long pre-interview where the neuro-psychologist will ask you questions about yourself, your injury, etc... They like also to talk to a close family member or friend to help get a more complete picture. (For example, I had no idea that I constantly repeated myself until my husband said it and all my friends mentioned it in their letters.)

The testing is usually done over the course of one long day. However, they can break it up if that proves too tiring for you.

Most of the time you will get your results in about two weeks. The neuro-psychologist will call you and a family member (if you want) in for a long discussion about your results and make any treatment suggestions. You will also get a written report.

I understand your fear about getting neuro-psych feedback. However, it's not as bad as you might imagine. Frankly, it's not that you don't know something is wrong. During the testing, you may find, as I did, that there are tasks you can't do at all. And, of course, you've seen your MRI and live with your deficits every day. So, in short, while the specifics and extent might surprise you, the news that you have brain damage isn't news at all.

In a funny way, listening to my neuro-psych was a relief. Finally someone understood how I was thinking and feeling and behaving and could explain to me exactly why I was thinking, feeling and behaving that way. Before that, I thought I was going nuts.

The neuro-psych also helped target my cognitive therapy and got me access to some of the support services I obviously needed.[/color] [/COLOR]

welcome

think most aspects have been covered the, reading problems is kind of like dyslexia text moving about and fracturing, well that how it is with me , my daughter came home from school the other day and we were talking, she told me some of the kids, have different colored films that they place over the text , that helps them read I haven't tried it, but maybe worth a go

best wishes

PCSLearner,

If you are going to discuss anything from your journal, keep it simple and positive, like, "Good job, in the past, (two weeks/months ago) you struggled to do that"

My wife has a signal for me now. I tend to drone on in a discussion or social group. If we are seated, she will sit close and softly put her hand on my leg to get my attention. I have learned to recognize this as a clue to shut up or yield to the others to talk.

When your daughter gets in the "oh look a bird! blah, blah," if you can, go with her thoughts, The ability to be abstract and make observations of her surroundings can be therapeutic.

I enjoy observing faces and children. If I see a child in a store looking at something with curiosity, I will likely engage him in his observations. Something like, "Isn't that neat. Do you know how it works" or "Wow, can you imagine those bubbles all over the place."

Fortunately, the mom is usually within ear shot and my wife is nearby so I don't look like a creep. Getting a chance to be in a child's mind (think like a child) can be very refreshing. I'm a grandpa so my grandkids love this part of my personality. I used to be much more rigid.

There is almost a euphoria in observing the pleasant things around us. Her injury likely makes her easily distractable. Enjoy the moment, then softly return to the task at hand. You may discover some personality characteristics that you have not seen in her before.

I do this often and get a response from my wife of, "Can we get back to what we were doing?" Fortunately, she understands why I wander like this.

Regarding working with children, Young children will usually not respond to her in a negative way. The performance threshold is much lower. It can give her a great sense of normalcy, especially if she can let her mind wander like a small child's. It helps if these opportunities are in a quiet setting.

Her sense of recognizing when she is struggling to understand something often helps her understand when others are trying to understand something.

For the high achiever who is used to judging others as less accomplished, this ability to behave at a simple level is new and valuable.

You said: "If you are going to discuss anything from your journal, keep it simple and positive, like, "Good job, in the past, (two weeks/months ago) you struggled to do that" You know what you are talking about!

She just saw her grandparents for the first time since Thanksgiving. After a few minutes of visiting her grandma cupped her face in her hands and said, "We are getting our girl back." The look of joy and relief on my daughter's face brought us all to tears.

You also said, "For the high achiever who is used to judging others as less accomplished, this ability to behave at a simple level is new and valuable." Wow...this is absolutely happening for her. She has learned invaluable lessons in compassion.

Thank you for your insights.

Good for grandma. These are the kind of comments that mean the world
to all of us that have had these kind of injuries. I still feel much better when someone tells me that I seem to be doing better.

Its much better to have positives said.

So maybe its important to find something positive to say to her each week,
if not each day.


Donna