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Old 05-06-2011, 04:45 PM   #1
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MyPoorBoy HB User
Question 14 yr old Son recently diagnosed with Osteoporosis

I was wondering if anyone else out there has had to deal with this. My son is 14 and recently diagnosed with Osteoporosis. We have not been to a specialist yet. It seems none of the dr's around here have ever had to deal with this. I know they want to do further testing to find out what is causing it. I would really love to hear other peoples experiences with this. I have done a lot of research but have not found out to much information. I am scared out of my mind with worry for my son. He was a very active boy. He has given up his passion already. He loved to skateboard that use to consume his every waking moment. He has had many fractures and broken bones in the past. Recently after complaining to a new Dr and he finally listened to me about my son.(and had a bone density test done) I told him it is not normal the amount of breaks he has had. 23 that we know of. During his last episode of breaking his elbow we found out he had broken both collar bones 4-6 months earlier and didn't even know it. It makes me wonder how many other bones he has broken and didn't know it. Often when he broke a bone he felt no pain. He would tell me it didn't feel right or the muscles hurt really bad. On two occasions he had to have pins or screws put in. The other breaks have healed on their own. So if anyone out there has any information about this could you please let me know. I am very eager to find out some more information and this worry is driving me crazy!! Some back ground on my son. Other then this he has been a very healthy boy. He eats right, has never really been sick. He don't get sick with the flu or common colds very often if once a year or once every two years is about it. His teeth are healthy only has had two cavities. Although his baby teeth were with out enamel. He has not really had any illnesses that would stand out. He was born tongue tied and has had to have that clipped 4 times already, He has had an issue tho with his elbow and right shoulder popping out of joint quite often. Dr says that it is getting stronger now that he is getting older and would not require an surgery for it. Other then that. He is a very athletic energetic boy.

 
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Old 05-08-2011, 08:01 PM   #2
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Re: 14 yr old Son recently diagnosed with Osteoporosis

I did some reading and found something that sounds like what your son may have. It's called Osteogenesis Imperfecta. It has 4 varieties. Type 1 is mild and Type 2 is bad but Types 3 and 4 are in between and have mostly very fragile bones that break easily. And it is treatable with the same drugs we older people use for osteoporosis.

Check it out.

My understanding is that osteoporosis in children comes from a very different source than the same disease in older adults. And the trick is finding out what is wrong. With no other symptoms, the intermediate form of Osteogenesis Imperfecta seems possible.

Let me know what they find. I know you are scared.

Gentle hugs, mom.

Jenny

Last edited by jennybyc; 05-08-2011 at 08:02 PM. Reason: spelling

 
Old 05-26-2011, 12:50 AM   #3
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Re: 14 yr old Son recently diagnosed with Osteoporosis

Thank you so much Jenny for your reply. So far we went to see the endo dr two weeks ago after running many test. It only showed that he don't have any malabsorption problems. His growth hormone was normal, his testosterone levels tho are that of a grown man. His bone age is 17 and he is only 14 right now. They said he is not passing any calcium out through his urine. His TSH levels are normal, Parathyroid is normal. Blood calcium was normal. Also the other test she said came back normal. He has to go see a geneticist in Aug to see what he can come up with. I did read about OI but he don't fit a lot of the criteria for it. I am praying that is not what he has. At first they thought that he didn't fit it either, but now with his results they think it might be. They do know he has a connective tissue disorder they just aren't sure what. As he has had many dislocations of his elbow and shoulder. He pretty much out grew the elbow dislocations but the shoulder continues to be a problem. Some days he can dislocate it by just reaching out for something. It is very loose and sloppy joint. We are working to improve the muscles to help stabilize the joint a bit more. The good news is that when it does happen he don't have much if any pain. Its just that loose. They are also concerned that he may not be feeling pain like most people. He has in the past broken bones and never knew it. Until later discovered on xrays. He has suffered several stress fractures in his hips and lower back that he seems to feel pain from tho. Now he has to see a ped cardiologist also as he has been having bouts with tachycardia. After wearing a monitor for several weeks he had an episode where his heart rate was up to 150 bpm while sitting and eating supper. He is so tired out lately and has had most his activities restricted due to the fact we don't want any more fractures. I just hope and pray that what ever this is...He will be able to live a normal active lifestyle at some point in his life. It just kills me to think his best years were as a child and will only slide down hill from here. I will keep you posted if I hear any other news or they find out any ting else. Thanks again. Anyone with a child going through similar issues I would love to hear from you.
Terri

 
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