It was suggested that I repost this here from someone at the welcome thread.

I have a daughter that acquired a severe enclosed brain injury about 18 months ago from an auto accident. The doctors seem amazed by her recovery. From her initial prognosis to where we are today, I’m astounded. She was diagnosed with a severe diffused axonal injury. The doctors described that she had brain shearing throughout about 80% of her brain. She had two tears in her brain near the brain stem and an indeterminable amount of damage due to low oxygen saturation levels. Aside from the brain injury, her lungs collapsed, she had damaged organs, internal bleeding, and a few broken bones. The fact that she survived the physical injuries was a miracle. I was told around 90% of survivors with her type of brain injury never wake and those that do still had quite a grim prognosis. Looking at my daughter's recover, it's hard to describe her recovery as grim. She is a huge inspiration to me and many others who have shared in her journey. I try to be vigilant about seeking out all the information I can find to help my daughter progress to the best of her abilities.

Currently, she has significant deficits in memory and cognitive abilities, but is doing much better than I ever imagined. I would love to hear from others with a loved one with a severe diffused axonal injury. Since 90% of survivors never wake from their comas, it’s been very difficult to find others with a recovering patients to converse with to share strategies to help my daughter cope and potentially recover even more. She’s still in rehabilitation therapies, but I’m not sure how much longer that will last since her progression has slowed down so much. I look forward to any information that can help us and sharing any information I have that may help someone else!

Angel,

Sorry to hear of your daughter's injury. I have a friend who suffered a similar injury except he was in a coma for three months. It took him two years to learn to talk and walk. That was twenty years ago next month. He is fully ambulatory. Talks with just a bit of a struggle. Is a Master at backgammon. Travels the USA competing in Veterans' Paralympics. His busted body limits his full mobility.

You can likely look forward to a different personality. She is the same inside by will struggle to relate to others in the same way. You desperately need to read Dr Glen Johnson's TBI Survival Guide. It is online at www.tbiguide.com and available for download to print out at http://www.drakecenter.com/file.axd?...vivalGuide.pdf

Most important is to be non-reactive to her struggles. She has enough negative reaction inside her mind. Support her. Accept her as she is now. This is the new her. Help her accept her current condition. Try to treat her like a normal person. Limit the chaos in her life. Loud noises, visual clutter, voices. Too many voices at the same time can be overwhelming to most TBI subjects.

The lower her stress levels, the better her brain can heal. Stressful events can set her back days or weeks. Too many visitors for the holidays or just a get together can be stressful. Try to learn to recognize when she has become or is becoming overwhelmed. You will likely see it in her eyes. Her gaze will start to look vacant. Observe her environment and try to help her avoid such an environment in the future. She may be able to talk with friends for a few minutes but not a half hour. This is normal.

Let us know about her difficulties. We are a diverse group of TBI and mTBI people with many life experiences.


My best to you and your daughter.

Hi Mark,

Thank you so much for suggesting these readings. I will make sure to check into them.

I'm so glad to hear your friend is leading a productive life! It sounds like he's been through some great struggles of his own. My daughter's speech was one of the last things to return. It took a year before she could put an understandable sentence together and it remains her most noticeable problem.

We're very blessed in this my situation because her recovery is phenomenal considering the amount of damage to her brain. I know most in her situation aren't as fortunate as her.

She is very verbal when she is irritated so it's quite easy to tell when people need to back down. I encourage her to speak her mind when people are bothering her. It helps prevent violent outbursts. Before her accident, she was highly intelligent and gifted. She's still incredibly intelligent; it's just hard to make others see that now because of her speech problem and processing issues. She is also bipolar so it's hard to tell what causes outbursts now. I've had years of practice on not overreacting to situations and calming her down. This experience has been very handy over the last year.

I have tried various things to help reduce stress for her and I'm still working on finding things that work for her. She seems stressed a lot and refuses to talk to counselors. All she says to them is...I don't want to talk to you. I've respected that and took her out of counseling. She's 18 now and that is her decision. We talk about things often, but all I can really do is listen because most of my replies don't seem to help. I have to be honest when I speak to her or I'm not treating her normal and she would know if I were trying to sugarcoat things.

We do our best to go on with life as normal. We realize she's an intelligent person and we treat her as such. The hardest thing is getting others to treat her normally. When you look at her, she looks normal so she's okay at first with people. It's their reactions to her when speaks that irritates us. I would love to know how to reduce the negative stigma that is cast towards her when she speaks.

I really appreciate your input and look forward to speaking with you and others in the near future.

Take care,
Angel

Angel,

My friend has similar struggles. I got him hooked up to the internet back in March. He can communicative by email without any symptoms of his injury. Email takes the speaking irregularities out of the way. He volunteers at the YMCA a few times each week and also at the VA hospital. This allows him to have social contacts with people who understand his difficulties.

I met him at a Brain Injury Support group. Have you checked into any Brain Injury Support groups? Ours serves both the injured person and their caregiver. It is very helpful. The caregivers group is very good for my wife. Even though I am likely the highest functioning in the group, my wife can still connect with others who deal with the same personality and cognitive issues.

There is a wide variety of TBI persons in our group. Some are wheel chair bound, others need canes or walkers, some are highly ambulatory but have speech difficulties, and the list goes on. Some live entirely on their own. Others live in a supportive group home or with family. The ability to observe all of the different symptoms, behaviors and personalities is very helpful.

Most are many years post injury. Their positive outlook on life is remarkable. My wife thoroughly enjoys meeting with the other caregivers.

I am sorry if I am babbling. I am trying to endure one of my many headaches while I wait for the Tylenol to take effect. This head ache started last night at 7:00 pm. It has come and gone through out the night and morning. Just another part of TBI or for me, mTBI/multiple concussion syndrome.

My best to you.

Hi again!

I'm sorry to hear your head hurts. That is something my daughter has to deal with occasionally as well.

I live in a very rural area and we haven't found a support group for TBI specifically. For the brief time my daughter returned to public school, I found a group that supports people and families that have teenagers with disabilities. Shelby is still in denial about her condition so we stopped going per her request. I don't feel forcing anything is going to help make her situation better.

Thank you again for the book! I loved that I could read it online and not have pay for it. I read most of it yesterday evening. I bypassed the hospital info since we're past that stage, but I do think it may be simple enough for my daughter to comprehend in small bits. Memory is a significant issue for my daughter so I'm not sure how she'll retain what she reads. We're still working on that.

I hope you feel better soon!

Angel

The download version of Dr Johnson's Survival Guide is free to download. For those that can afford it, he asks for a small donation to help with the costs of maintaining his web site. Web sites are usually charged based on the amount of traffic to the web site. He does a wonderful service to the TBI and mTBI community.

A downloaded copy can be reformatted to make it easier to read for TBI subjects who may have vision/reading p[problems. For example, I struggle if there is too much information or clutter on a printed page. It that case, I will break up the page to make it easier to read without my brain becoming distracted by the clutter.

Has your daughter had a neuro-psych assessment? These can be a good way of helping the patient put their symptoms into real terms. They can also help the patient accept that they are not losing their mind but just living with a mind that does not always work correctly. Understanding and accepting our dysfunctions is the first step toward learning how to work-around or make accommodations for those dysfunctions.

My best to you and your daughter.

Hello, It sounds as if your daughter is progressing well and she will continue to progress. I suffered a severe closed head injury that resulted in 2 months in a coma and a not so good prognosis. I went through all the conventional/ traditional treatments and rehabilitation but what helped me the most was a visit to Dr. Richard Neubauer to undergo a series of hyperbaric oxygen treatments. He is the father of HBOT(Hyperbaric Oxygen Therapy) and neurologic injury. He is at the Ocean Hyperbaric Neurologic Center in Lauderdale by the sea, Florida. Remember that the brain is very plastic and the body has an amazing capacity to heal. The fact that she is young means that her healing will be even better. I am also in Georgia and I assume your daughter probably ended up at Shepherd as I did. I also spent time at Shepherd Pathways. Would love to talk to you as I am a strong believer in HBOT to assist in brain injury recovery. Dr. Dianne Peek

Hi Diane,

My daughter's rancho score was too low for Shepherd to take her. She had to be at a 4 and she was 2. She went to Children's at Scottish Rite for their impatient rehab and then day rehab.

Ultimately, it was a blessing. One of her schoolmates and friends that had been accidently shot in the head about two weeks prior to her accident was there. Their injuries were quite different, but both had brain injuries. He could talk and was surprising mentally all there. If he has memory or cognitive deficiencies, you can't tell. However, he couldn't walk and had difficulties moving because of his brain injury. They became quite competitive about recovery. It was good motivation for them both.

Thank you for sharing the HBOT information with me. I have not read about it yet. I will look into it and speak with her physiatrist about it when we see him next month. I actually have a list of questions for him. I hope he's planning on spending some time with her this time around because my list isn’t' getting any shorter. Actually, he's always been awesome about answering all my questions. I hate that we have to find a new doctor when she turns 22.

If you don’t mind my asking, what is your doctorate is in?

Thanks!
Angel

Hi again, I lost this site so couldn't reply but now it's found again. I am a doctor of veterinary medicine, and you really should pursue finding out about HBOT for your daughter. Just call and talk to Dr. Neubauer. He is extremely nice. Your traditional rehab doctor will not know too much about this most likely and won't encourage you to try this, but I know it can help and at least find out about this form of therapy for neurologic injury. I hope your daughter is doing well and continues to do well. My best, Dr. Dianne Peek

I hope this isn't too off-topic. 3 of my children were homeschooled all the way; 1 from 8th-12th grade; the other just for one year (grade 11). I would like to recommend a website http://theswap.com which has a forum I've been part of since 1997.