Neuro nurses...or anyone

  1. I didn't know where to post this, so I figured here would be good.
    Hope it's okay.
    My son has an anoxic brain injury. He had a neuro appt on Friday. Finally I got a great doctor to explain in detail everything to me! Lots and lots of stuff. Jacob seems to have some spasticity.....new one on me. Not enough to worry about though and doc seems to think it won't get worse. He also told me to start video taping suspicious things like his staring episodes and rage attacks, even though we seriously doubt they are seizures. Man, I LOVED this Neurologist!! He apent an entire hour explaining things to me instead of rushing me through the appt.

    Okay, way too much info for the questions I have! Sorry!

    The question I have is about supplements. He mentioned giving Jacob Vit. E. The problem is we didn't talk of dosage. Any idea how much I should give? Also, what is DHA? Should I also give him this? And if so, how much? He'll be 11 yrs old on the 12th of Sept. He is 4' 7" and weighs 76 lbs. He is two years out from his injury. Still healing and recovering and I could kick myself for not starting these supplements earlier, but other docs told me not to. This doc says that whatever a parent wants, he is all for it.....as long as it is not a danger to the child. He told me Jacob is probably at about 80% of previous functioning. Although how he made this assesment I have no idea. He said the supplements won't get him to 95%, but maybe 83%! I'll take that 83%!

    We're also going to do biofeedback! Other doctors have told me this would be useless for Jacob. This guy says it works and it sure won't hurt him, so why not! So he made us a referral for that! HUGE waiting list though....also on a list for new psych for both boys.
    He also wrote a script for OT! YIPPEE! I've tried for the past year to get Jacob back into OT. His wrists are very weak and his handwriting is terrible. He can't grip a pencil properly....and no matter how much I work with him, it's not getting better. Maybe I'm not working with him enough or the right way, I don't know. I do what I saw the OT doing at Children's.

    I'm also looking for any information on Aricept and brain injury. This doc told me to research effects of Aricept on adults with TBI. Problem is I can't seem to find anything. Do any of you know anything about Aricept in patients other than Alzheimers?
    Jacob takes Ritalin for attn and ADHD sx, and Prozac for depression. Will any of the supplements used for brain injury interact with these drugs? I'm not planning on using gingko or anything like that....just the supplements and possibly the Aricept if it will improve his cognitive functioning. His rehab doctor is the one who mentioned Aricept....we see her on the 11th of Sept. So I want to be prepared with info on Aricept when we see her.

    Thank you for any input. I appreciate ANYONE'S ideas!
    Kim

    By the way, did I mention I LOVE this new neuro? Gotta love a doctor who is willing to give some encouragement AND his time! What a guy! Let me know if any of you live in Ohio and need a neuro for your child!
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  2. 8 Comments

  3. by   christianRN
    OHmom2boys:
    Wish I had some answers for you, but I don't have any kind of intelligent response.
    Just wanted to say how happy I am for you to find a neuro you like. Can't imagine what you're going through. I work as a sub nurse for the public school here, and I have all the respect in the world for the families of children with (any kind of) special needs. Glad you got the OT order. WIll keep my eyes open for any type of info that is relevant.
  4. by   aimeee
    Here is a reference to a study at Duke University regarding the effects of Aricept on TBI. No mention of study results.

    "The Learning Services/Duke University open label trial will attempt to ascertain if ARICEPT treatment will improve memory, cognitive, behavioral or functional improvements in TBI patients.
    Cognitive deficits associated with TBI frequently include speech impairment, psychomotor disorder, mood disorder and/or motor impairment.

    According to Learning Services Corporation President and CEO, Randall W. Evans, Ph.D., memory loss is one of the most significant consequences of traumatic brain injury. "Many people who sustain TBI were healthy, active individuals before their injury, and have long lives ahead of them. Memory deficits prevent patients from learning the skills they need to adapt to life after brain injury. Improving or reducing those deficits can offer new hope for TBI patients." Evans, who has published extensively on brain injuries, is also a co-principal investigator of the ARICEPT study. Researchers will study the drug's effects on patients residing in Learning Services facilities."
  5. by   aimeee
    Found something else but here it was tested on only 7 people.

    http://www.craighospital.org/tbi/research.asp#memory

    Best wishes for working out a successful treatment plan for your son. Its good to hear you have found a neurologist who is willing to take the time to talk to you and explain things.
  6. by   aimeee
    Found some study references. Will probably take some doing for you to get a copy of them but perhaps your nearest university can help:


    Masanic, C., Bayley, M., vanReekum, R. and Simard, M. (2001). Open-label study of Donepezil in traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 82(7), 896-901.

    Whitlock, J. (1999). Brain injury, cognitive impairment, and donepezil. Journal of Head Trauma Rehabilitation. 14(4), 424-427.
  7. by   aimeee
    Taverni JP, Seliger G, Lichtman SW. Donepezil medicated memory improvement in traumatic brain injury during post-acute rehabilitation. Brain Inj 1998 Jan; 12(1): 77-80.

    http://biometry.musc.edu/directories...elsimer_cv.doc (MICROSOFT WORD) - ... Bradley, DA, Principal Investigator: Open Label, Placebo-controlled Trial of Donepezil Hydrochloride in Community-Dwelling Persons with Traumatic Brain Injury ...
    http://biometry.musc.edu/directories...elsimer_cv.doc

    OLD AGE PSYCHIATRIST (PDF) - ... In one series of 22 patients treated with donepezil following traumatic brain injury, there was a statistically significant improvement in full- scale IQ and ...
    http://www.rcpsych.ac.uk/college/faculty/oap21.pdf
  8. by   OHmom2boys
    Thank you so much. I'll print out this and give it to the doctor. She should have easy access to those mentioned. Knowing her, she's probably already read them! I just wanted to know these things too before I talk to her. I hate going into a doc appt knowing nothing.

    Once again, thank you both for your help!
    Kim
  9. by   JailRN
    Glad to hear Jacob is progressing, Why didn't the MD get an OT order sooner?? Joey has it in his IEP (at our insistance) through the school. But glad you got it now-betterthan never.

    The one thing I've discovered is "don't should on yourself" --otherwise, you will spend the rest of your life beating yourself up. You're a good Mom whos kids have had a $h*!!y break that tests your patience, faith and sometimes, your will to live. Then, when there's a problem, everybody wants to blame the Mom, Don't let them!!!

    You're doing a great job!!!! Glad you found the nuero with a heart.
  10. by   susanna
    Hey, I know this post is real old but I am planning to do work with biofeedback and qeeg with brain-damaged patients and would like to know, if you dont mind sharing, how biofeedback worked out with your son? Did it work? Did it help him? A lot? How long did it take before you saw effects?

    Quote from OHmom2boys
    We're also going to do biofeedback! Other doctors have told me this would be useless for Jacob. This guy says it works and it sure won't hurt him, so why not! So he made us a referral for that! HUGE waiting list though....also on a list for new psych for both boys.
    He also wrote a script for OT! YIPPEE! I've tried for the past year to get Jacob back into OT. His wrists are very weak and his handwriting is terrible. He can't grip a pencil properly....and no matter how much I work with him, it's not getting better. Maybe I'm not working with him enough or the right way, I don't know. I do what I saw the OT doing at Children's.

    I'm also looking for any information on Aricept and brain injury. This doc told me to research effects of Aricept on adults with TBI. Problem is I can't seem to find anything. Do any of you know anything about Aricept in patients other than Alzheimers?
    Jacob takes Ritalin for attn and ADHD sx, and Prozac for depression. Will any of the supplements used for brain injury interact with these drugs? I'm not planning on using gingko or anything like that....just the supplements and possibly the Aricept if it will improve his cognitive functioning. His rehab doctor is the one who mentioned Aricept....we see her on the 11th of Sept. So I want to be prepared with info on Aricept when we see her.

    Thank you for any input. I appreciate ANYONE'S ideas!
    Kim

    By the way, did I mention I LOVE this new neuro? Gotta love a doctor who is willing to give some encouragement AND his time! What a guy! Let me know if any of you live in Ohio and need a neuro for your child!

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