JUVENILE OSTEOPOROSIS

[GRANDMASYLVIA]

My 13 year old grandson has idiopathic juvenile osterporosis. He was diagnosed last year  after his hand broke off his arm in football, and is on 3 days of paliminate IV therapy every 3 months. This is the drug that causes necrosis of the jaw in some users. He has a lower dosage than is used for bone cancer. After over a year of therapy he was tackled in a game of touch football and suffered two broken fingers, a wrist fracture, arm fracture and longways fracture of the arm bone all in one arm. He is very athletic and my question is should he have physical therapy to see what exercise he is allowed? Also, he developed dermagraphia with the IV treatment. Is this common? He has a double row of eyelashes like Elizabeth Taylor has. Could this be a hint as to if his disease is genetic? I think that all children with multiple  fractures should have a bone density test and all pediatricans should be advised to be aware of the possibility of juvenile osteoporosis when a child presents with multiple fractures. My grandson was finally had a bone density test after six fractures when he west for a routine checkup before starting football and my daughter suggested it to his doctor.

[mommy27]

I was reading your post and have a question for you if you don't mind. My son is 7 and has fractured the same arm twice within a year. Do you think I should ask for the bone density test? He is very active in sports as well including football. I'm sorry to hear that you grandson has to go through all this at such a young age. Were all the fractures at one time?

[GRANDMASYLVIA]

We were away on vacation..just got back. Yes, he should have a bone density test but his pediatrician probably won't do one until he breaks three bones. That is the norm. This is considered a rare disease because it has not been diagnosed in the past as bone density tests were not done on children. Our Children's Hospital is seeing a large increase in children with this problem as the doctor's become aware that they should do the test. I wish Alex has been diagnosed earlier. His fractures were over a period of about eight years. The one that finally resulted in the bone density test being done was when his hand broke completely off his arm both bones all the way through when he was tackled from behind in a football game. Now, again tackled in a touch football game and his other arm and fingers fractured. He broke some bones doing Ju-jit-su. He took it for six years and was very good. It is a wonder he did not break more bones as he is very active and loves sports. He is still carrying a football around with the hand that is not in a cast. He is in perfect health except for this..great diet lots of exercise, little TV or video games.It could have been his skull that fractured or his spine.It is better to find out before they get in a wreck learning how to drive and fracture their spine. He just had another three day IV therapy which is supossed to strengthen his bones. You only build bone until you are 20 the doctor said.The therapy made his broken arm hurt more than it was hurting.

[mommy27]

He went to the dr on Friday for his post-op checkup. It seems that one of his bones has shifted slightly out of place. The Dr didn't seemed concerned and said with kids the bones tend to correct themselves and build calcium all around the broken area. I am very concerned that his arm may end up crooked and need re-broken in the long run to straighten it out. The dr has 30+ years behind him so I would like to believe that he knows what he's talking about. But this is my son and I don't want him to have to go through anymore pain down the road. I asked him if I should be concerned about 2 fractures in one year and he said that is very normal in children. He said he would perform the density test if he were to break other bones in a short amount of time. We go back in 2 weeks to take this cast off and put on a short arm cast. He is so active and it kills him to not be able to play and to things his sisters get to do. Last year, he couldn't finish the football season and it's the same this year. Sad thing is we are going to the Superbowl and he won't be able to play in it. Both  of his bones in the forearm were completely broke in two. Last year one was broken in two but the other bone was what they call a greenstick fracure(not completely broken in 2). Should they have used pins to set the bones? I'm beginning to wonder if this will be suggested if his bones don't correct themselves. Did you grandson have to hav any pins/plates? I really appreciate all of your help.

[GRANDMASYLVIA]

Alex's fractured arm bones, one of the bones that they did not pin is not completely straight.The one where they used a pin is straighter. His doctor also said it will straighten out with time, but that was before he was diagnosed with osteoporosis.The bones were both broken all the way through. This time no surgery was done, just casting. He goes back in about a week to see how all the fractures are healing. Was your doctor surprised when you asked about a bone density test? Had he considered this possibility this with your son? Has he seen other children with this condition? Idiopathic means no other medical condition is causing the osteoporosis in Alex's case. I think it is becoming more common as children aren't given whole vit D milk and vitamins with calcium. Alex's doctor said  really no children should play football. Of course, Alex wants to play football more than anything and he still thinks he will be able to play after another year of IV therapy. His Mom does not have the heart to tell him that he won't be able to. Today, I told him he will need two strong arms to hold his babies someday and carry groceries for his wife someday so  please no more football. He helped rake leaves today using his good arm and was also lifting weights. He was 13 in June and is 5'9" and weighs 126 pounds. He is an "A" student with a heart of gold. He has modeled and is a beautiful boy.He has a great sense of humor and plays the piano and sax (not at the moment!).He has a very kind heart and does not blame the boys who hurt him. I don't think playing football is worth dealing with limited mobility for the rest of his life, but of course the boys do. He likes the Saints. We live in Columbus and went to OSU so of course football is very big here. He likes his aquarium and photography. His father is a nature photographer. When he had surgery to pin the bone his heart stopped from the anesthesia and we almost lost him. I could not stand to lose him. I get sick when he has his IV treatment. It breaks my heart that he has to go through all this. I would give anything to help him.I certainly wish your son well. I hate for children to be sick or hurt in any way.

[mommy27]

It really breaks my heart to hear that Alex is having to go through this at such a young age. I totally understand his desire to play football since my son is the same way. I want for him to play so badly but am a bit cautious about another fracture. The Dr seemed a bit surprised when I asked for the denisty test. He said that it isn't mecessary at this point b/c he has only had 2 fractures. He told me if he has anymore this year then it would definitley be done. He has not seen any children with this condition so I am thinking of getting a second opinion. The sad thing to this whole situation is we have no personal insurance so we are paying the visits out of pocket which can be very expensive. But it's worth it so see J