expert needed

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My 15 yo daughter had a TBI 10 years ago. She has balance disorder, so land activities are not a good choice. She swims every day for 1.5-2 hours with a coach (she is on the highschool swim team). She eats low carb and about 1300 cal. per day. She continues to gain weight. She weighs 150 lbs and is 5'3. She has LE weakness as well as poor core strength. I need to find a trainer/ MD/ expert who can help figure out why she is not losing weight and gaining muscle strength. Everything I find is for adults without disablilties. If anyone knows anyone or has heard of someone who can help, please let me know. We are willing to travel to get her on a track that works for her. Thanks!

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  • NightOwl1
    NightOwl1 Posts: 881 Member
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    Have you looked for specialists in your area? Possibly at a regional hospital?

    I am not an MD/expert, and I don't know anything about your daughter's disorder. I do know for a healthy teenager, 1300 calories a day while exercising 1 1/2 to 2 hours a day would be too few calories. Her body may not be getting the energy it needs, and it may be storing fat as a result.

    I really hope you find someone who can help you with expert advice, because anything that I or anyone else offers really won't have any sort of validity compared to a medical oppinion.
  • FitJoani
    FitJoani Posts: 2,173 Member
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    HAS she had her thyroid checked
  • casamelsmom
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    I should explain things. TBI is short for tramatic brain injury. This was caused from a medical mistake. Her balance was affected so that she could never pass a "sobriety test". Is there a test to determine if she burns what she eats? Maybe she does not process protien as she should? Not sure what I am looking for, but I thought I could pull knowlege that is out there. She does have an endocrinologist who monitors her diet. She also has a physical therapist who is at a loss as to why she has no core strength no matter how much they work with her. We live near Pittsburgh and have been through many doctors with no answers.
  • casamelsmom
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    HAS she had her thyroid checked

    Yes. She has had a lot of blood work. Not sure if there is a misread from her brain to her muscles or to her endocrine system from the injury. I am trying to look "outside the box" since nothing has worked for the past 10 years.
  • PLUMSGRL
    PLUMSGRL Posts: 1,134 Member
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    Try a sports chiropractor~you can contact Life University in Marietta Georgia or Palmer University in Davenport Iowa, for Chiropractors that have that certification in your area. Also there is a neuro chiropractor in Atlanta Georgia, that may also be able to help...Just make sure you SEE the certification-many say they are able to help, but don't have the extra training.
  • PLUMSGRL
    PLUMSGRL Posts: 1,134 Member
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    I have an appt with my sports chiro on tues, I'll ask the name of the neuro chiro in Atlanta and let you know.
  • FitJoani
    FitJoani Posts: 2,173 Member
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    I should explain things. TBI is short for tramatic brain injury. This was caused from a medical mistake. Her balance was affected so that she could never pass a "sobriety test". Is there a test to determine if she burns what she eats? Maybe she does not process protien as she should? Not sure what I am looking for, but I thought I could pull knowlege that is out there. She does have an endocrinologist who monitors her diet. She also has a physical therapist who is at a loss as to why she has no core strength no matter how much they work with her. We live near Pittsburgh and have been through many doctors with no answers.
    how bout the new childrens hospital? its shocking with our medical teams they cant find whats wrong.
  • Azdak
    Azdak Posts: 8,281 Member
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    I should explain things. TBI is short for tramatic brain injury. This was caused from a medical mistake. Her balance was affected so that she could never pass a "sobriety test". Is there a test to determine if she burns what she eats? Maybe she does not process protien as she should? Not sure what I am looking for, but I thought I could pull knowlege that is out there. She does have an endocrinologist who monitors her diet. She also has a physical therapist who is at a loss as to why she has no core strength no matter how much they work with her. We live near Pittsburgh and have been through many doctors with no answers.

    There are ways to check one's resting metabolism and exercise metabolism. The problem is going to be finding someone who can accurately interpret the data. What you are looking for is some place that will do a metabolic test using a device that analyzes expired air. There are some chiropractor and dietitian offices that advertise that they check "resting metabolism" but they do it with a device that just analyzes oxygen and not CO2, which greatly affects the accuracy. I did a quick google search and didn't find anything in your area.

    Lifetime Fitness uses this device and can do the testing, however, they use a canned program for the results that would not be appropriate for your daughter--they are mainly trying to sell "fat burning" training sessions based on discredited theories. I would not trust them. You might check the Univ of Pittsburgh. I didn't see any specific mention of testing for the public on their website, but here is some contact information:

    Center for Exercise & Health Fitness Research
    A-149B Trees Hall
    Pittsburgh, PA 15261
    TEL: (412) 648-8251
    FAX: (412) 648-7092

    They might be able to provide some guidance.

    Good luck
  • misssuperstitious
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    I'm not sure of the name of the test, but when I was in high school I had an eating disorder, so fearing I'd messed up my metabolism, my Dr.s at Mayo Clinic had me sleep in this tube thing. It told them exaclty how many calories I'd burn if I did nothing but sleep. I was 16, and at that time it was over 1300. Maybe you should try Mayo.
  • jodie_t
    jodie_t Posts: 287 Member
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    There is something called post-traumatic hypothalamic obesity .. basically damage to the hypothalamic region
    (which can occur following TMI,) can cause obesity..


    p326 of this google book has a section on it you can read here

    http://books.google.co.uk/books?id=tVAnazIV1JwC&pg=PA326&lpg=PA326&dq=post-traumatic+hypothalamic+obesity&source=bl&ots=DnTFPqj8hh&sig=00gzLdgnfSXs18WVlmuAafPzRx4&hl=en&ei=80czTdiDN5SSjAfatdnmCg&sa=X&oi=book_result&ct=result&resnum=9&ved=0CFYQ6AEwCA#v=onepage&q&f=false

    another link

    http://ukpmc.ac.uk/abstract/MED/12119657/reload=0;jsessionid=D4C521517A4FF31B153E20BF0368248A.jvm1



    have a google around and see what you can find..I wonder if it messes up the pituitary gland function or something...
  • casamelsmom
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    I should explain things. TBI is short for tramatic brain injury. This was caused from a medical mistake. Her balance was affected so that she could never pass a "sobriety test". Is there a test to determine if she burns what she eats? Maybe she does not process protien as she should? Not sure what I am looking for, but I thought I could pull knowlege that is out there. She does have an endocrinologist who monitors her diet. She also has a physical therapist who is at a loss as to why she has no core strength no matter how much they work with her. We live near Pittsburgh and have been through many doctors with no answers.
    how bout the new childrens hospital? its shocking with our medical teams they cant find whats wrong.

    Well.... I have a love/hate relationship with CHP. They are reason she had the TBI in the first place. Although they saved her life after they gave her the injury.... The neuro dept told us she would "outgrow" it. Her endo is in Edgewood Town Center. LOVE her. Her Eye doc just left there and went to Akron Childrens. We have an appt at the end of the month with a neuro at Akron Childrens in Youngstown. Poor kid has been through the wringer with all this.
  • Rhock1213
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    I dont know if you have found any help for your daughter or not by now but I know there is not that much information out there on hypothalamic obesity after TBI. I had a long process trying to find answers on what was wrong with me after I had my brain hemmorage. It took many doctors and my age did not help. I was 27 when it happend and 30 now. Most doctors are pedactic doctors that deal with hypothalamic obesity so I was told old for them to take my case. Most doctors told me it was my fault or dont worry I will return to my old weight prior to the TBI but I didnt it kept getting worse I gained 35 lbs in less than 2 months, and I had always been a size 4 and I should say that exercise physiologist was my major i college. Anyways thats some of my back ground but I finially found a doctor that actually listend to me and didnt blame me for my weight gain I am now on 3 different medications, one of them has helped with stopping the weight gain and another has helped reverse it somewhat. I was told I will never be back to where I was. I continue to do my exercise and work hard and eat 1000-1100 calories a day and have to stay on a strick low carb diet as I am now insulin resistant. I am at the highest dose in my medications and of course I dont like how I am so I am still looking for more answers and herbal paths that may help me. As of now nothing else has helped. Im curious did she have a change in her sleeping pattern? did her resting heart rate increase at all? more fitgued?
    -Rachel
    rhock1213@yahoo.com