TBI

Kara - posted on 11/24/2008 ( 4 moms have responded )

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My daughter was in a car accident October 3rd of 2007. I joined this group and looked for a Brain Injury community and didn't see one so I thought I would create one. If you know of one that is already out there please let me know I am new to face book and don't have it all figured out yet.

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Dina - posted on 09/22/2010

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Kara you are on the right track with the neuro psychologist. Ours did wonders for us. IT is the school I am battling right now! And my 2 yo grandson that I am raising for a bit. Plus hubby never home! Yea, it is rough

Teresa - posted on 01/23/2009

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Hi, Kara! Our appointment with his neurosurgeon went well, and he agreed with pretty much everything I said in terms of behaviors could most definitely be stemming from the TBI. In fact, he laughingly said, "It even has it's own medical code" and it's called PTBD - Post Traumatic Behavior Disorder. Yay, my son has yet another dx... lol



He wrote out orders for us to get into a battery of neuropsych testing, but warned that it can take 3-6 months before getting him in. I'm good with that considering it's been 9 long years. Like you, I was surprised that he received such "big people" diagnoses at such young ages, but now I'm just angry that so many doctors were willing to label him rather than say, "Hey, your kid's head was crushed and here's a brochure showing you the symptoms of TBI - how uncanny is it that they're IDENTICAL to his behaviors?!"



I got a great book the other day called 'Living with Brain Injury - Guide for Families' and it said studies show that symptoms of brain injury actually tend to increase/get worse over time! I certainly don't wish that on you since it sounds like your daughter is truly doing remarkable all things considered, but it's worth being aware of. What kind of changes did you see in your son?



Oh, and yes, my son had 2.5 years of wrap-around/TSS, mobile therapist, an IEP, etc. Unfortunately, they only really work on cognitive function and I'm afraid no amount of 'talk therapy' is going to affect my son. They also did structuring and family therapy stuff, but we all still thought we were dealing with ADHD/ODD stuff that could be helped with medication and reward charts... I'm learning now why none of the stuff we've tried has worked. My goal right now is to get my son into some kind of neurofeedback or biofeedback therapy (don't ask me the difference! lol). I'm studying it and looking for a provider. I guess a lot will also depend on what the neuropsych testing shows. Our journey is far from over, though.

Kara - posted on 01/20/2009

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Hi Teresa, my daughter is actually doing well.  I know what you mean about it being a minority though.  We were in the hospital/Rehab with several other kids and many did not have the outcome that she has had.  We don't know why she is doing so well; her diagnosis is severe brain injury.  I guess it is by the grace of god!  She is a senior this year and will be going to college in the fall.   She got a sports and academic scholarship.  We are really excited about her future!  She has to work a lot harder than she did before and there have definitely been obstacles!  She goes next Monday for her driving evaluation to see if she can get back on the road. She also wasn't able to play any sports this year which to her was torture.  But we have dealt with everything the best we can.   In my research about TBI, I noticed that many people believe that even a slight injury can cause problems.  Believe it or not my 12 year old had a head injury when he was in Kindergarten (he got a basal skull fracture from falling out of a red wagon on the sidewalk at his grandparents) He was not in a coma like my daughter but he was out of it and did have a small bleed.  I almost think his personality was changed by his injury more than my daughters.  It sounds crazy but after looking at some of the information I am beginning to wonder.  I would love to hear what the Neuro psych has to say. I think it is amazing what they can figure out about the brain especially when your son's accident was so long ago.  I am surprised they diagnosed ODD and mood disorder NOS at such a young age.  But maybe that was a good thing for you.  I work for our states early intervention program.  Were you able to take part in your states early intervention program for therapy for your son?   Let me know how your appointment goes tomorrow if you have time.  K



Teresa - posted on 01/20/2009

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Hi, Kara! I'm not sure what else is out there, but my 9 year old son was injured in a vehicle-related accident when he was 9 months old. He suffered TBI and the past almost 9 years have been an... adventure... lol You don't say how your daughter has or hasn't recovered, but I'm finding out that I'm often in the minority in that my son recovered in most ways. Unfortunately, we actually believed that the impact of the TBI didn't exist, but he was diagnosed at age 3 with ODD (oppositional defiant disorder), at age 5.5 with ADHD and at age 7 with mood disorder-NOS (bipolar). He's on 7 different meds per day and nothing is really helping. It wasn't until a few weeks ago when a friend lovingly suggested this is the result of his brain injury that I started researching and realizing that yes, in fact, all of his behaviors can be fully explained by the brain injury, not just random bad brain chemicals or bad parenting :^/



Anyway, I've been on this journey for a long time, but only now feel that we've found the right path. We're going to his annual visit with the neurosurgeon tomorrow and asking for a referral to a neruopsychologist to start working on therapies to rehabilitate his brain rather than just dosing him with dozens of pills and hoping something helps.



I'm open to talk if you want :)



Teresa

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