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Juvenile osteoporosis
Ashley_Elizabeth posted:
I've just turned 18 and I have just been told that N have juvenile osteoporosis. I don't know much about it but I have an appointment next month in the hospital, I was just wondering does any have any advise or information for me, as you can expect I am really worried about the effects it will have on me.
26 Replies |Watch This Discussion | Report This| Share this:Juvenile osteoporosisI've just turned 18 and I have just been told that N have juvenile osteoporosis. I don't know much about it but I have an appointment next month in the hospital, I was just wondering does any have any advise or information for me, as you can expect I am really worried about the effects it will have on me.
bonebabe responded:
Juvenile osteoporosis is usually secondary to something else going on. It's good that you're seeing someone about it. They'll run a bunch of tests, hopefully get a diagnosis, and see about treatment for the underlying cause. Have you been anorexic or had irregular periods? That's one cause. Do you have any other obvious health problems that require heavy meds? In the meantime, make sure you take a multi vitamin and get about 1000 mg of calcium each day. Your body is still building bone and you need to feed it. Good luck to you.
Beth
Beth
Report This| Share this:Juvenile osteoporosisJuvenile osteoporosis is usually secondary to something else going on. It's good that you're seeing someone about it. They'll run a bunch of tests, hopefully get a diagnosis, and see about treatment for the underlying cause. Have you been anorexic or had irregular periods? That's one cause. Do you have any other obvious health problems that require heavy meds? In the meantime, make sure you take a multi vitamin and get about 1000 mg of calcium each day. Your body is still building bone and you need to feed it. Good luck to you. <br><br>Beth
Ashley_Elizabeth responded:
Thank you for replying, the reason that i'm so worried about it is that there isn't any underlying cause for it, i've always had a really healthy diet thanks to my parents and i've never taken any medication for anything that would of concequence. I've already had a Dexa scan I think it was called and that showed me having it, but i am going for blood tests and other tests next week but im worried about them becuase they havent really told me anything about it.
Report This| Share this:Juvenile osteoporosisThank you for replying, the reason that i'm so worried about it is that there isn't any underlying cause for it, i've always had a really healthy diet thanks to my parents and i've never taken any medication for anything that would of concequence. I've already had a Dexa scan I think it was called and that showed me having it, but i am going for blood tests and other tests next week but im worried about them becuase they havent really told me anything about it.
Ashley_Elizabeth responded:
I've now been to see the Doctor about my osteoporsis... I was not good news at all, I have it quite bad in my spine in some places its -3.2. I have to got back in 8 weeks they told me because they don't know what treatment to give me they said the one they usually use to treat people with this condition , they can't give to me because of my age and because if I have children it will affect the pregnancy! As you can expect I'm devastated at the moment and extremly shocked still i can't belive it some-one please give me some advice. 
Report This| Share this:Juvenile osteoporosisI've now been to see the Doctor about my osteoporsis... I was not good news at all, I have it quite bad in my spine in some places its -3.2. I have to got back in 8 weeks they told me because they don't know what treatment to give me they said the one they usually use to treat people with this condition , they can't give to me because of my age and because if I have children it will affect the pregnancy! As you can expect I'm devastated at the moment and extremly shocked still i can't belive it some-one please give me some advice. <img src="http://img.webmd.com/community/images/confused.gif" align="top" border="0">
bonebabe responded:
I'm so sorry. Did they say what's causing it? Treating the source is necessary to prevent further damaging the bones. You don't say how old you are, but did they talk about birth control pills as an option for treatment? They do help the bones, but not the depo shot. Most case of Ideopathic Juvenile Osteoporosis correct themselves. If that's what you have, that's encouraging. In the meantime, get your 1200 mg of calcium and at least 1000 ID of Vit D. Did the doctors say anything about a Vit D deficiency? You should have been tested for that as well. There are some cases where bisphosphanates have been given in JO cases experimentally. A dialogue should be opened with your doctor about that if nothing else is on the table. I know you're probably afraid to move, but the more you move, the more bone is formed. It's the action of muscle pulling on bone that stimulates growth. Just no bending forward at the waist or twisting of the spine. Walking is your best best - at least 1/2 hour a day. Keep us informed and don't give up.
Beth
Beth
Report This| Share this:Juvenile osteoporosisI'm so sorry. Did they say what's causing it? Treating the source is necessary to prevent further damaging the bones. You don't say how old you are, but did they talk about birth control pills as an option for treatment? They do help the bones, but not the depo shot. Most case of Ideopathic Juvenile Osteoporosis correct themselves. If that's what you have, that's encouraging. In the meantime, get your 1200 mg of calcium and at least 1000 ID of Vit D. Did the doctors say anything about a Vit D deficiency? You should have been tested for that as well. There are some cases where bisphosphanates have been given in JO cases experimentally. A dialogue should be opened with your doctor about that if nothing else is on the table. I know you're probably afraid to move, but the more you move, the more bone is formed. It's the action of muscle pulling on bone that stimulates growth. Just no bending forward at the waist or twisting of the spine. Walking is your best best - at least 1/2 hour a day. Keep us informed and don't give up. <br><br>Beth
Ashley_Elizabeth responded:
Back Again thank you so much for all your advise Beth I will be asking my doctor about these treatments next time I see her even if the are experimental it's worth a try... they don't know yet what causing it, they are testing for everything still they said they they want to test me for osteogenisis imperfecta, surely I can't have that I have seen pictures of people with this and my body is normal looking, I hope it's just in case. I've been taking Calcichew -*D3 for now.... and becuase i am quite active already ive been doing more walking like you sugested, it hurts my back though some times espically becuase it's really cold at the moment where i live, my back hurts more in the cold 
.
.Report This| Share this:Juvenile osteoporosisBack Again thank you so much for all your advise Beth I will be asking my doctor about these treatments next time I see her even if the are experimental it's worth a try... they don't know yet what causing it, they are testing for everything still they said they they want to test me for osteogenisis imperfecta, surely I can't have that I have seen pictures of people with this and my body is normal looking, I hope it's just in case. I've been taking Calcichew -*D3 for now.... and becuase i am quite active already ive been doing more walking like you sugested, it hurts my back though some times espically becuase it's really cold at the moment where i live, my back hurts more in the cold <img src="http://img.webmd.com/community/images/frown.gif" align="top" border="0"> .
bonebabe responded:
Good for you. Talk to your doctor and ask questions. If you don't get answers, go elsewhere. I think the more knowledge you show and the more proactive you are, the more likely you'll get a positive response from your physician.
Report This| Share this:Juvenile osteoporosisGood for you. Talk to your doctor and ask questions. If you don't get answers, go elsewhere. I think the more knowledge you show and the more proactive you are, the more likely you'll get a positive response from your physician.
Ashley_Elizabeth responded:
I will defiantly sugessting these to them, I would try anything really as long as it didn't have any long term effects like that other one does. Especially because I know that my doctor is a bit confused herself about what happening she hasn't treated anyone of my age for this before but I know shes asking other speacialist for advice aswell.
Report This| Share this:Juvenile osteoporosisI will defiantly sugessting these to them, I would try anything really as long as it didn't have any long term effects like that other one does. Especially because I know that my doctor is a bit confused herself about what happening she hasn't treated anyone of my age for this before but I know shes asking other speacialist for advice aswell.
Ashley_Elizabeth responded:
I'm really nervous, I have an appointment with my doctor on tuesday...I'm not looking forward to it at all. I think that I will be finding out all of my test results. Being only 18 really doesn't help, I don't know what I'll do. I'm dreading the thought of going in there.
Report This| Share this:Juvenile osteoporosisI'm really nervous, I have an appointment with my doctor on tuesday...I'm not looking forward to it at all. I think that I will be finding out all of my test results. Being only 18 really doesn't help, I don't know what I'll do. I'm dreading the thought of going in there. <img src="http://img.webmd.com/community/images/confused.gif" align="top" border="0">
bonebabe responded:
You'll feel better once the waiting's over and you know what you're dealing with. Do keep us posted and we'll be sending good thoughts your way.
Beth
Beth
Report This| Share this:Juvenile osteoporosisYou'll feel better once the waiting's over and you know what you're dealing with. Do keep us posted and we'll be sending good thoughts your way. <br><br>Beth
maryjane1201 responded:
am 23 and just found out i have osteoperosis in my hips and osteopenia in my lower back the this i have incountered are sever pain in the back all over. i just found this out at the beginning of feb. i have had the pain longer then that. are you taking calcuim and vitamins they also say if it runs in your familly you will likly get it.
Report This| Share this:Juvenile osteoporosis<i>am 23 and just found out i have osteoperosis in my hips and osteopenia in my lower back the this i have incountered are sever pain in the back all over. i just found this out at the beginning of feb. i have had the pain longer then that. are you taking calcuim and vitamins they also say if it runs in your familly you will likly get it.</i>
Ashley_Elizabeth responded:
hiya... well ive had pain in my back for years now but they kept putting down to gymnastics and never actually tested for me for anything...its took them this long to even say i have it... they also think i might have osteogenisis imperfecta but the test is going to take months to come back. alls that they are giving me at the moment is the calcium tablets and they have said that they are not going to treat me unless i get worse! i couldn't believe when they told me , they said this is because of the long term effects that i will have if they treat me with the usual treatment . i think this does run in my family, well my younger brother also has it.. he was diagnosed in 2004 with it and is now only 16.
Report This| Share this:Juvenile osteoporosishiya... well ive had pain in my back for years now but they kept putting down to gymnastics and never actually tested for me for anything...its took them this long to even say i have it... they also think i might have osteogenisis imperfecta but the test is going to take months to come back. alls that they are giving me at the moment is the calcium tablets and they have said that they are not going to treat me unless i get worse! i couldn't believe when they told me , they said this is because of the long term effects that i will have if they treat me with the usual treatment . i think this does run in my family, well my younger brother also has it.. he was diagnosed in 2004 with it and is now only 16.
Ashley_Elizabeth responded:
hiya bone babe ... just thought id get back in touch sorry it wasnt sooner. When i went to the hospital they told me that they are not going to treat me for the osteoporosis until it gets worse they said. i haven't got another appointment until about 4 months. They also took more blood samples from me to test for osteogenisis imperfecta (sorry i can't spell it ). They think i might have that but they said it was hard to test for so it will take a while for the results to come back. Thats all i found out really they didn't tell me much at all when i went.
Report This| Share this:Juvenile osteoporosishiya bone babe ... just thought id get back in touch sorry it wasnt sooner. When i went to the hospital they told me that they are not going to treat me for the osteoporosis until it gets worse they said. i haven't got another appointment until about 4 months. They also took more blood samples from me to test for osteogenisis imperfecta (sorry i can't spell it ). They think i might have that but they said it was hard to test for so it will take a while for the results to come back. Thats all i found out really they didn't tell me much at all when i went.
bonebabe responded:
They probably aren't treating you yet because as I said before, most cases of juvenile osteo correct themselves. If you do turn out to have the osteo imperf, they'll probably do some treatment then. Problem is the treatment for osteoporosis is not suitable for premenopausal women. Yours is basically a case of wait and see and be careful. It would probably be helpful to you to ask the doctor for a referral for physical therapy to help you with your activities of daily living so that you can avoid a fracture.
Beth
Beth
Report This| Share this:Juvenile osteoporosisThey probably aren't treating you yet because as I said before, most cases of juvenile osteo correct themselves. If you do turn out to have the osteo imperf, they'll probably do some treatment then. Problem is the treatment for osteoporosis is not suitable for premenopausal women. Yours is basically a case of wait and see and be careful. It would probably be helpful to you to ask the doctor for a referral for physical therapy to help you with your activities of daily living so that you can avoid a fracture. <br><br>Beth
Ashley_Elizabeth responded:
feel like no one cares... when my brother was found to have it every one was there for him and worried about him, but now that i have it i feel like no one cares. im not dealing with the fact that i have it very well and i dont have any one to talk to it about. i dont know what to do its ruining my life. i feel like i cant be a normal 18 year old. i think about it constantly... its destroying me.
Report This| Share this:Juvenile osteoporosis<i>feel like no one cares... when my brother was found to have it every one was there for him and worried about him, but now that i have it i feel like no one cares. im not dealing with the fact that i have it very well and i dont have any one to talk to it about. i dont know what to do its ruining my life. i feel like i cant be a normal 18 year old. i think about it constantly... its destroying me.</i>
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