20 Year Old Son with Severe Osteoporosis

Hi
I live in the UK and my son has just been diagnosed with severe osteoporosis. He had osteopoenia a year ago and we were hoping he would have either improved or been the same as he approaches 21.
He broke his arm badly at 8, his collar bone badly at 15, his foot in two places at 16 (one of which we didn't know about until an xray showed another old healed fracture) and his L1 vertebrae and sternum at 18 whilst jumping into a waterfall (a miracle he didn't drown and is not paralyzed). When the surgeon screwed the pins into his spine, he told us, his bones were very soft and we needed tests run. This was last Feb 08 and he was then found to have high DPD, normal calcium and vit D, lowish testosterone and osteopoenia (-3.0 spine, -0.8 hip). We were told that he probably had low grade juvenile osteoporosis and hopefully as he approached 21, it would turn around). His bone density scan results have just come out and they are (-4.4 spine, -1.2 hip, -3.1 arm).
We are now having all his bloods done etc. What usual causes are there that could be doing this to a young man? What are the causes out there with regards to young men having this?
He has missed two college intakes due to broken bones and AVNRT (heart tachycardia) ablations, this was his year to 'not visit a hospital'. He is off to college in September and is now concerned, just how easily could he break a bone now? I am trying to stay positive and encouraging but feel for him so much. He recently had jaw reconstruction for a grade 3 occlusion (Nov 08) and we are wondering if this was wise now?

Thanks, I would love to hear from young men/men especially about osteoporosis (causes/stories/treatment etc.)

SarahMum

By SequoiaHealth
Posted July 14, 2009 at 7:47 am
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Hi SarahMum:
I would need some more info on your son. Not familiar with DPD. What is his 25 OH vitamin D level? How is his diet? Activity level?

Thanks,

Woody

By SarahMum
Posted July 14, 2009 at 3:40 pm
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HI
DPD is deoxypyridinoline, it is the rate of bone turnover. In other words, my son is breaking down bone too fast, that too many bone cells are present in his urine.
His diet is very good as we have numerous allergies in our family and we have to cook very healthy meals. He is not on any medication and at the moment his exercise is low simply due to not seemingly being able to recover from his smashed L1 due to discomfort.
I might also add that he has bone pain in his hips and spine and he seems to be wasting away :(
I am hoping it is low hormones/testosterone as it seems this is quite curable, am I right?
Are his numbers really quite low, how do others compare?
Thanks

By VictoriaLynn
Posted July 14, 2009 at 7:04 pm
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Many times the cause of young osteoporosis is Celiac Disease. That was the cause of mine.
Read up and it and see if he should be tested.
Celiac disease caused malnutrition. So the body is not getting the calcium it needs and many other needed elements.
The good news is the Celiac is diet controlled.
Best wishes.
Victori

By SarahMum
Posted July 15, 2009 at 2:46 am
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Hi Victori
He has been tested for celiac, it was one of the first tests they did last year as I am celiac and two of his sisters are. They are suspecting he has a type of Ehlers Danlos syndrome. I have had sore joints all my life and have hypermobility, it could be that he has this collagen disorder in his bones. I think only genetic tests will determine this.
Can bone density as low as his, be turned around, once the cause has been found? I have got him on Calcium and I am now walking with him every evening to get him moving more. He complains of pain in his hips and his back is always sore but I feel I need to get him moving more.
All the blood tests have been done and now we wait until he can be seen by the Professor in a week or two.
Thanks
Sarah

By VictoriaLynn
Posted July 15, 2009 at 9:38 am
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Bone loss can be turned around especially in someone so young. IF the cause is found and he follows a good lifestyle. It sounds like you are doing all the correct things!!!
Good Luck.... Victoria....
PS... for the celiac test was it the blood test or the Biopsy? It can make a difference. With your family history I think his eating gluten free would be a great idea!!! Can not hurt and it might help....
I think gluten causes a lot of problems for people with or without celiac disease...

By Loods
Posted July 15, 2009 at 11:06 am
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I am so sorry to hear of your Sons problems. As he started fracturing so young, I assume they ruled out the possibility of Osteogenesis Imperfecta - a genetic condition affecting the collagen?

Has he been on any osteoporosis drugs? I was hospitalized twice for tachycardia when I was on fosamax?

By SarahMum
Posted July 16, 2009 at 4:16 am
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Thank you everyone. Firstly, OsteopD, I have just returned from an international aging conference in Paris (I am doing research in aging) and they had a stand by the pharmaceutical company Servier promoting the strontium. I asked for papers and was going to ask the Prof. about it when I see him with my son. So, this is brilliant news, thank you, I am definitely going to follow this one up.

Loods, he was apparantly tested for Osteogenisis imprefecta and they were more of the opinion it could be Ehlers Danlos rather than OI. I will be following up with this as well.

Victoria, I will consider taking him off gluten after we see the Professor about his results. He is not a happy bunny at the moment and I think taking him off gluten before the results may be just a bit much for him to handle. However, if we think it may help, I know he will do it.

Many Thanks again
I am really glad I have found this group for advice.
Sarah

By mkay
Posted July 16, 2009 at 4:23 pm
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Hello Sarah
Our 13 yr old son was just diagnosed with severe osteoporosis also. I just got off the phone with the doctor's office and his first set of blood results show normal levels of vit D and calcium as well. Now everyone is stumped. We have been referred to a geneticist at a Mayo hospital for further testing. Our son is also slight, just 72 lbs at age 13. He does have short gut syndrom as he lost a little over 50% of his intestines due to a bowel perforation when he was born (prematurely). He has had broken growth plates over the years(knees,wrists) - but his bones on the last xray he had due to a broken heal from just slipping on a rock while on a field trip showed his bones very light. With my untrained eyes I knew something wasn't right. DEXA showed -3's, -4's on hip and spine. He has multiple food allergies as well so he eats very well balanced meals and always has. He does not have celiac disease he has had the biopsy.

By SusanRae
Posted July 16, 2009 at 8:04 pm
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Hi mkay ~

You mention that your son lost part of his intestines. I don't know if this would have some of the same effects as gastric by-pass surgery for weight loss purposes. Supposedly the surgery can limit nutrient absorption. I thought there was a discussion on this website about how that can potentially cause osteoporosis, but I couldn't find it.

Here are a couple of random links I found by Googling that discuss this: http://www.sciencedaily.com/releases/2007/10/071015081505.htm

http://www.webmd.com/diet/weight-loss-surgery/gastric-bypass

There's probably a pubmed study about this, but it didn't come up on the first page of Google hits.

. . . Although you said his calcium and vitamin D came back normal so it probably wouldn't be this after all. What a stumper. . .

Take care.

By Loods
Posted July 17, 2009 at 8:38 am
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Hi SarahMum,

I can fully understand why your son is feeling down at the moment, he wants to be just like his mates and get on with life.

On a plus side I know lots of people with O.I. who have gone to college/university and then on to good careers despite the occasional fracture.

I hope the worry of his bone health won't put your son off continuing his studies at college. It might mean him curtailing some of the more bosterous activities, which I know must be hard when you are a lad, but hopefully he will still pursue what he wants to do.

I hope you get the answers you need from his results.

Kind regards Loods

By SarahMum
Posted July 18, 2009 at 3:53 pm
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Thanks again everyone. I have sent him out tonight with his Dad and sister to have a beer and listen to music. I have bought him a soft velcro spine support so he can sit and enjoy it and not worry about the pain in his back so much. I have asked the rheumatologist for the full blood and urine results as soon as they are available so that I can do my own research prior to seeing the Professor in a couple of weeks. I like to go in there, informed and as I am an academic, I have access to almost all research available through my two universities I am affiliated with.
If anyone wants to know about a subject and would like a journal paper on something, please let me know!

All the best
Sarah

By VB43
Posted September 1, 2009 at 1:21 pm
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Hi SarahMum,

I was reading this thread of messages and thought that my story could be a little bit of comfort to you.

I am a now 27 year old woman with severe osteoporosis possibly caused by my recent diagnosis of Ehlers Danlos. Growing up I had both of my hips and shoulders reconstructed and most recently broken my wrist and foot all within two months of each other.
Growing up my doctors always mentioned that I was super flexible and that my muscles were not supporting my joints properly, hence the surgeries. Last year when I broke two bones in 6 months they decided to do a bone density scan and some genetics testing and found out I had osteoporosis and Ehlers Danlos. Needless to say I can understand some of your sons frustrations. Ehlers Danlos (the hyper-mobility type) unfortunately can not be treated. You just have to readjust your lifestyle a bit now that you understand there are some limitations to what you can do. I have been an avid runner my whole life but have certainly cut back as my back and joints are feeling the repercussions.

Please tell your son not to give up hope. I work full time and take part time MBA classes at night and although sitting all day does take its toll in terms of back pain, mental strength helps me through it.

Good luck to you both and I hope that your doctors give you hope in getting your son back to a "normal" lifestyle.

Best!
Victoria

By ijomom
Posted September 2, 2009 at 10:26 pm
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My 16 year old daughter has idiopathic osteoporosis (z=-3 spine) that seems to be getting worse. Actonel was brutal, but on her digestive system and her emotions. She just had a Reclast infusion and we are hopeful the results will at least keep her stable. She doesn't have any other joint issues. I hope your son is moving towards University. Its hard not to wrap them in cotton, but as my daughter reminds me frequently - the good news is she always heals! Hang in there!

By spacadet
Posted September 8, 2009 at 1:49 am
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Hey Moms,

I'm now 31, but was first diagnosed with osteopenia at age 14 and now have osteoporosis. I've been tested for Celiac, Marfan's, Ehlers-Danlos, and many others, but no doctor has ever been able to assign a definite cause, just "some sort of collagen deficiency." I'm sure that with all the tests your children are going through, you understand that at that age, the osteoporosis is assumed to be a symptom of some other underlying disease.

Even if you never find a cause that you can treat, it's possible to have a full life. I have a great career as an engineer. Be prepared for the call where your kid says "Hey mom, I went skydiving this weekend! I didn't break anything but I promise to never do it again!" And also the one that goes "Hey mom, I think I broke a rib putting on a sock - I'm headed to student health for an x-ray."

I carry a few strong lessons with me.

1. My body is this crazy wonderful thing that is not like anyone else's body. It's like a science experiment I get to study for the rest of my life. And I make sure that my doctors feel the same - I don't get along with close-minded doctors who refuse to order labs. My motto is "get the data!"

2. Financial prudence is important. I'm probably going to have higher medical bills than many of my peers, so I'm careful about saving for retirement. These are skills that can be learned, and they are best learned young.

3. The balance between "too active" and "just active enough to protect my bones" is always going to change. It's just a fact that I'm going to have to feel around in the dark for my physical limits as I age. 30 was a big year for me - the first time I felt truly old and broken-down. But I do always heal :)

4. My mom worries about me a lot, and that won't change. I've learned when I'm expected to call her with updates. I'm lucky to have someone who loves me this much. And so are your kids!

SarahMum - my doctors evaluated me for Ehlers-Danlos and Marfan's syndromes. You mention some cardiac issues, which is usually one of the factors in a Marfan's diagnosis. Is he *really* tall? I'm 6' tall and very thin, which is why they evaluated me for Marfan's, although 6' is not quite Marfan-tall. I also have hypermobile joints (I can easily make my thumb touch my forearm, for instance), hence the Ehlers-Danlos evaluation. Neither evaluation uncovered enough compelling factors to make a diagnosis. But those are two syndromes that are not always the obvious causes that doctors look for first.

By ijomom
Posted September 8, 2009 at 10:27 am
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Spacadet - many thanks for sharing your experience. My daughter loves the data and details of her treatment and is seriously considering pursuing medicine as a career. The doctors have completely ruled out all other causes, so she has idiopathic juvenille osteoporosis (ijo) as primary - very rare (actually on the rare diseases list which she loves!). They don't know what causes it nor what makes it go away. Should continue to be an interesting journey!
Thanks again :)

By BobWallace
Posted September 9, 2009 at 11:33 am
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In one so young I would think some sort of malabsorption condition might be involved such as Celiac Disease which is my own case and the number one case of osteoporosis in men.

By sagar
Posted October 3, 2009 at 8:55 am
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Hi I am 30 year old male with osteoporosis....with no underlying caused diagonosed!! I have had blood tests and xrays but they have not found a cause. I was actually given osteoporosis...i was healthy as good ans i made a trip to Amsterdam and I was assaulted and stuck with a needle an dfrom the n onwards i started feeling pian in my bones and getting back aches...i have had all sorts of blood test but nothing has been found. I have gotten over the incident but i feeli my bones are geeting worse day by day and i dont know who to turn to for help........

By SarahMum
Posted October 4, 2009 at 11:43 am
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Hi Everyone
Thank you all for responding on here. It was very encouraging to read your post Spacadet.

The update on my son is:

He has been to see the Professor and they are going to hold off meds until another Dexa scan has been performed in December, which is 6 months after the last one. They will also be doing it attached to the University Hospital where the Prof. works rather than here near our home. They have research projects going on there and are more qualified to analyze the scans than here. My son does not want to go on meds but has agreed to if the bone density decreases even more or he breaks another bone. At the moment, he has hip pain, which is a bit worrying.

They decided to give me a dexa scan after being diagnosed with with a dehydrated slipped disc in my painful back. I have had pain for 4 years together with joint pain. I too, am osteoporitic, not as bad as my son but it is there. They are quite sure it is Ehlers Danlos as I have 7 children and 5 of them have either very stretchy skin or painful joints, like I have had since I was 11. The possibility now is that the collagen disorder is in my son's bones, rather than the skin and joints. We are waiting to be referred for genetic tests to see if this is possible.

I am having blood tests done tomorrow to check all my hormone levels to rule out that as a cause. I feel we are getting there but not sure about the future treatment for my son when he is not keen to go the meds route. They will hold off meds for me until all tests have been completed. This is not what I expected, I would rather just worry about my son.

Thanks again
Sarah

By Jayay
Posted October 5, 2009 at 9:32 am
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Hi Sarah, Has your son ever had any corticosteroid treatment as this is a major cause of male osteoporosis. It is also possible for young people to develop osteoporosis if their mother was not getting enough calcium or vitamin d when pregnant. As you live in the UK if you would like a copy of our support group magazine, let me have your address and I will send you one. Jayay

By SarahMum
Posted October 6, 2009 at 7:59 am
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Hi Jayay
No, my son has had no corticosteroid treatment. Also, my diet was very good during my pregnancy, I eat extremely healthily as I am a sportswoman and I took all the necessary supplements. My son, however has severe lactose intolerance. This was discovered when he was a baby and he would scream with colic, if I even had dairy products. He went back on milk after he was 3 years old but came off again when he about 11 as the constant diarrhoea was unbearable for him. He broke his first bone (radius) badly, needing two manipulations when he was 8, landing on his arm in a paddling pool.

His calcium and Vit D levels are normal according to his blood tests. The Professor here, Professor Cyrus Cooper, Southampton University Hospital, says there is no clinical cause for his osteoporosis, according to the tests already completed.

My father broke his wrists twice when tripping over as a 40 year + adult. Unfortunately, he died at 55 so we have no way of finding the genetic link there. My son and I are both very finely built like my father was.

I think the thinking caps will be on again after the next bone scan in December.

thanks
Sarah

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