Discussions By Condition: Bone conditions

Diagnosing Brittle Bones!help!!

Posted In: Bone conditions 7 Replies
  • Posted By: Anonymous
  • July 16, 2006
  • 05:28 PM

Hey.
I Think My Son Has Osteogenesis Imperfecta.does Anybody Know Of Any Definate Tests That Can Be Done To Diagnose This Condition.i Need Help Asap!:)

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7 Replies:

  • Hey.I Think My Son Has Osteogenesis Imperfecta.does Anybody Know Of Any Definate Tests That Can Be Done To Diagnose This Condition.i Need Help Asap!:)Hi, I don't know of any, doctors also refused to diagnose my son as OI but he has broken his bones so many times, they are beginning to admit it. I still am not happy with available info on how to treat it, or at least improve the bone density, there must be something we can try? Keep me updated if you find out anything
    graham 1 Replies
    • October 2, 2006
    • 11:11 PM
    • 0
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  • Hi...I have recently been told that my daughter has Osteogenesis Imperfecta after her second fracture from seemily innocent accidents (She is almost 4). She also has blue sclera so once the Dr saw her eyes she immediately said she had the condition. We still don't know what it means for her or what type she will have - we don't even know how they will determine any of the above either. And we aren't sure how it was passed on to her...is it possible to be a new mutation. I have no idea about any of this but I'm trying to stay calm until we know more.
    Anonymous 42789 Replies Flag this Response
  • Visit oif.org. They would be able to provide you with more info. & resorces.
    Anonymous 42789 Replies Flag this Response
  • I have OI and its easily diagnosed by a skin biopsy. Any hospitals pretty much can do it but it DOES take 6 months to get the results. PLEASE get this done ASAP. when I was 2.. they took me away due to finding fractures (wasnt diagnosed yet) and charged mom with child abuse. turned out I had OI. so get this test done fast please so that this does not happen to you.its simple test. just a skin biopsy.Hey.I Think My Son Has Osteogenesis Imperfecta.does Anybody Know Of Any Definate Tests That Can Be Done To Diagnose This Condition.i Need Help Asap!:)
    PixieMischief 16 Replies
    • October 4, 2007
    • 00:10 PM
    • 0
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  • Lots of meds. Pamidronate and Fosamax are 2 of them. Before treatments I was having 3 fractures per month and had been bed ridden for 5 years. PLEASE contact shriners hospital in quebec for info about OI treatments. ever since the treatments I can sit up and only get 1 fracture per year. Its like a miracle. these meds are a god send.Hi, I don't know of any, doctors also refused to diagnose my son as OI but he has broken his bones so many times, they are beginning to admit it. I still am not happy with available info on how to treat it, or at least improve the bone density, there must be something we can try? Keep me updated if you find out anything
    PixieMischief 16 Replies
    • October 4, 2007
    • 00:12 PM
    • 0
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  • go here http://www.wrongdiagnosis.com/o/osteogenesis_imperfecta/intro.htmand www.oif.org for more info about OI.
    Anonymous 42789 Replies
    • October 4, 2007
    • 00:39 PM
    • 0
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  • Hiyas! I'm 48 years old and have OI...my daddy had it as does his 2 brothers and one of his sisters...my sister and i both have it and two of her three kids do too. both of my sons have OI and 2 of 3 grandbabes...one having four broken femurs before he was 14 months...he didn't know how to act without a cast on! started walking at 15 1/2 months! YEA! needless to say we have been through the various child abuse accusations and all that over the years...what fun, huh. we have the greatest bone specialists available in our area and have a 3 hour drive each time there is a fracture.some thoughts from our own experiences...*get your child to a specialist! *the national osteogenesis imperfecta foundation (online!) is a valuable resource available*diagnostics will vary from doc to doc...for us, we have such a strong family history that there is little doubt! there are some dna testing available now that weren't around when we were kids...there are so many things that "go with" OI that aid in diagnosis: hearing loss, blue sclera, dental problems, scoliosis, short stature, large heads, kind of a pointed little jawline and chin, many many things.*when you do get set up with a specialist, you will more than likely have a very capable nursing consultant...she or he will be like a member of your own family! she will take care of so many details for you and your family that you will wonder what you done with out her before! a true blessing when you have negative actions from medical staff when you go to your local ER to obtain intial xrays, pain meds and stabilization for travel to your specialist...trust me, the nursing consultant you will have will be totally awesome!*if OI is the disease you are indeed dealing with, you will soon become very aware of when a fracture occurs, whether it be from something that makes any sense to anyone or not...how? you will see in a child's eyes (trust me, kids are resiliant but they cannot disguise the pain in their eyes), you will know from the particular cry they may have...and fairly soon you will actually be able to tell by lookin them over what is broken and will be able to tell the ER staff yourself...oh, and they just love that! not!*there are alot of things that occur in OI people...heart problems, upper respiratory issues, deafness, eye problems, dental problems, easily bruised, frequent fractures and/or dispacements, very flexible joints, depression, arthritis, bone pain, joint pain...REMEMBER, though, not everyone will have all of the same things!*OI is not only a disease of the bones but also the connective tissues...joints and such...it is a disease characterized by inappropriate or defective collagen in the body and its tissues.*EDUCATE! Teach your family, teach your friends, teach your school officials, teachers and classmates, and most importantly teach your family doctors! many many problems can be avoided by the information that you can share with people who will be caring for your family member(s) with OI!me personally, i have had numerous fractures, i am now deaf; completely in one ear and nearly in the other, blue sclera, large head, i'm 5'1/4" tall, have had joint replacement surgery with more in the future, restless leg syndrome, osteoporosis, arthritis, depression, all of my teeth have been removed (i'm a toofless grama!), bone pain from the inside out and back again for as long as i can remember, stomach and bowel problems, c-sections to prevent my pelvis from shattering........*NO MATTER WHAT YA DO...KEEP SMILING! We are blessed...there are several levels of severity in OI and no matter which type or level you are...you are blessed! I always told my sons (both OI kids) when a fracture would happen...you will get through this cause you have God, and ME! HANG IN THERE, WE COULD HAVE BEEN BLESSED WITH SOMETHING MUCH WORSE!
    Anonymous 42789 Replies
    • February 11, 2010
    • 03:56 AM
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