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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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01-21-2010, 08:48 PM | #11 | ||
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Thanks Vini! I believe that she will make a full recovery. It's just taking longer than we both would like!
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01-21-2010, 10:32 PM | #12 | ||
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Legendary
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Except for a miraculous discovery with stem cells, and not just the garden variety of stem cell recovery hoped for, all brain injuries are permanent according to the most indepth research. The big question is how much of the injury is permanent. Many, if not most PCS subjects will 'experience' a full recovery.
This 'experience' means a sense that they are back to normal. By normal diagnostic means, their cognitive performance will appear to be normal based on a non-stress testing environment. Up until my last injury at 46 years old, I experienced a full recovery with each of my previous 12 concussions, whether severe or very mild. I was aware if difficulties in certain stress situations but could minimize these situations by minimizing stress in my life and environment. When stress hit me, all bets were off. I might have an outburst of uncontrolled anger or a cognitive screw-up. As much as I 'experienced' a full recovery after my serious concussion at 10 years old, I have come to find out recently that others did not experience that full recovery in their relationship with me due to personality changes. My personality 'settled down' after a decompensation at 16, most likely due to medication (Dilantin, then Phenobarbital). My research shows that the medical establishments criteria of a full recovery is quite simple. It just means that the subject was able to return to their previous activities/functions. At very young ages, before the brain has finished growing to almost all of its adult size by age 5, there are brain growth factors and other issues that help overcome brain injury. Also, the brain continues organizing its functions up to the age of 15 so 'rewiring' is most possible during these times. Even though the brain continues to mature until age 25, the brain has then started to lose its ability to rewire and brain growth factor is minimal. By 40 years old, the brain has begun to deteriorate slowly at first, then increasingly as the brain ages, especially if it is not exercise with cognitive challenges. My position is simple and mirrors many of the best in brain injury recovery. Get the body healthy as a first goal. This included emotional health such as stress factors and physiological health such as nutrition and illness. Get a good understanding of the brain's current condition. This would be by diagnostic tests such as neuro-psych and qEEG, etc. ImPACT is a mini neuro-psych test. Accept this current condition and learn to work within it. Only when the current condition is acknowledged will progress be available without the stress of 'denial.' Quick fixes are not available. There are some neurotherapy techniques that help with the psychological components. If these are available and work, great. If not, accept the new ME and go on. There is a value in trying to get to a 'normal' life if possible as it will hopefully lower stress issues. If the 'normal' is a new normal, work to get family and others to accept the new normal. They can often be a big source of stress by denying the ongoing symptoms. Much of what we try to attain as a normal life is actually abnormal when looked at from a holistic health standpoint. We try to live to fast and furious. Energy drinks, coffee, alarm clocks, Instant messaging/texting, all contribute to a furious life style. There is a wise Irish song about three young ladies looking for their man.The lyric sung by one are: "I’m somewhat in a bother That is really quite alarming I have two lads pursuing me And each of them is charming One of them is dark and poor One fair with lots of money I don’t know which one to choose The flower of the honey What on earth am I to do It’s driving me half crazy Tonight I’ll make my mind up When I see them at the ceili To be a poor man’s wife Will be a life of washing dishes While a rich man’s wife will surely have Great luxury and riches In comfort how I know It wouldn’t bee too hard to wallow And being poor is not much fun On which one should I follow What on earth am I to do It’s driving me half crazy Tonight I’ll make my mind up When I see them at the ceili I’ve been lucky I’ve found a lad Who’s handsome and a neighbour And me, I’ve met a decent man Whose friendship I will savour And me I made my choice as well And in no way was it aisy But I’d rather have a man for love Than be a rich man’s lady" I have found it is much easier to enjoy a simpler life full of relationships and simple pleasures that to be constantly pushing the limits. I am convinced that had I pushed though my PCS that my life would have been a roller coaster of highs and lows as I crashed hard and fell from the heights every time I had a decompensation. At one point early in my life, I was in the top levels of income, it was quite a roller coaster. It was when others pointed this out to me that I decided to pursue a more simple life. A life that did not push my PCS buttons.
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Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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01-26-2010, 12:47 PM | #13 | ||
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My daughter is also 15, a sophomore, just shy of 6 month mark with PCS. I'm so sorry you are going through this. It really, really stinks. Thankfully my daughter hasn't had to leave school, but I have a few thoughts.
Does your district or state offer academics on-line or other on-line credit redemption? If so, could she go back, at least part time, for some socializing, but forget about getting passing grades and make things up in the summer? On-line you could help her through it (I'm not ashamed to say that I've written a few reports for her lately, read textbooks out loud, etc.). Finally, does your district offer home tutoring services? A true lifesaver for my daughter was learning that the library offers books that you can download straight to your i pod. We also got all of her teachers to agree to drop memorizing vocabulary words. Finally, we visited a psychologist who treats college athletes with concussions. She said she has sent patients to ivy league colleges whose grades had suffered due to concussions by writing an explanatory letter to go along with their transcripts. She believes it shows "perseverance through adversity." Extreme understatement in my view Best of luck to you and your daughter. Quote:
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01-26-2010, 06:33 PM | #14 | ||
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Absolutely would prefer an ACL or broken bone injury. Nobody suggests athletes are "faking" those, you know for sure when they heal, etc. Ugh.
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01-26-2010, 09:51 PM | #15 | ||
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PClearner
So true, and here in our world no one is faking. We hope both girls recover. Donna |
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01-26-2010, 10:25 PM | #16 | ||
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I get a lot of "she looks fine" - but if you know her - you know she's not. I've even had a hard time convincing her doctors of that! I think all high school students need a baseline established - athlete or not.
PCSLearner - thank you for those suggestions. Those are all things I have been looking into the past week or so. She attends a private Catholic high school, so it would be a little more challenging to dual enroll her in the public HS to get in home services. I am also looking at online classes and a couple of local schools that have one-on-one instruction. I do think she'll be ready to go back part time in soon. She actually told me she was bored and asked about going back. That was th first time I had heard either of those things in 3.5 months! If I could just get her to sleep well enough - then she'd be able to handle part if a day in school. |
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01-27-2010, 12:47 AM | #17 | ||
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Legendary
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Nancy,
What do you mean by <If I could just get her to sleep well enough - then she'd be able to handle part if a day in school. >? Do you observe her sleep behavior? Does she have any standard routine for sleep? Sleep has been a big issue for me since my injury. I have a number of observations that I could share once you help me understand her sleep issues. Regarding help with her schooling, Just because she goes to a private school does not mean she does not have access to services as a disabled student. Whether it requires dual enrollment (probably does so that the local district can get state ADA moneys) or not, she should have access to the same services as a public school student. Depending on the state, homeschool families sometimes access the state services under the disability provisions of the ed codes. When somebody says "She looks fine," remind them that she is one of the millions of invisible wounded in this country. Their support of her needs will go a long way toward helping society reduce its marginalization of the brain injured. Studies suggest that upwards of 80% of incarcerated and homeless persons are brain injured. Our society tends to kick them to the curb because they do not look hurt. There are many brain injured who are only a disability check and high utility bill away from homelessness. My best to your daughter, Hugs to all,
__________________
Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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01-27-2010, 02:07 AM | #18 | ||
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She does have a pretty standard routine in the evenings, but it doesn't seem to be doing the trick. Most of the time, she has trouble initiating sleep. Sometimes it takes 2-3 hours (or more) for her to fall asleep. She is then exhausted the next day and can barely get out of bed mid morning. Last night, she was really tired, fell asleep at 10 and then woke up at midnight and wasn't able to fall back asleep! I was surprised she actually managed to stay awake during the day today - but was too wiped out to send her to school. I had her using a ZEO for a while to track her sleep. It consistantly showed that once she fell asleep, she generally stayed asleep.
I think her headaches are contributing to her sleep issues as well as anxiety - though the anxiety isn't an everynight thing. |
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01-27-2010, 10:37 AM | #19 | ||
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I'm not completely familiar with the formatting here, so apologize if I am overlooking something here...
Is she taking amitriptalyne (sp?)? I almost forgot that my daughter had sleeping problems before she started on it. She would say she was exhausted, go to bed, and then toss and turn for hours. It's not for everyone but certainly might help with the sleeping. Sleep is so restorative for all of us (YOU must be exhausted), but it seems especially important for people with brain injury. |
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01-27-2010, 11:41 AM | #20 | ||
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My daughter is not currently on any medications. None of the doctors we have been working with will prescribe anything. The only thing they tried was ativan (a benzo) and it was terrible. All the usual sleep aids supplements haven't worked. I had her try ambien a couple of times and that failed too.
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