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ossentia?
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mountainmom48 posted:
Hoping bonebabe is around to weigh in on this. All comments welcome. My compounding pharmacist recommends this product, saying it is widely used/accepted in Europe. My daughter likely has osteoporosis due to non-weight bearing muscular/skeletal condition. She has metal in her spine and both hips (spinal fusion for scoliosis, hip plate to address dysplasia, rod for spontaneous broken femur) making DEXA difficult. Endocrinologist is considering fosomax or other type med, but since there is no protocol for an older teen, and without DEXA, we have no baseline, not sure what to do. I asked our pharmacist for his thoughts and this was his recommendation. MDs recommend 1200mg calcium plus 800IU vit D and possibly fosomax type med. Daughter's D2 is a little low. D3 is 65. Parathyroid is ok. Thyroid is ok. Can't think of anything else to add, but glad to give more specific info if needed. Thanks in advance.

Can DEXA be taken with metal in spine/hips? If not, is there another measure to take?
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bonebabe responded:
DXA cannot be performed on the hips if there is metal in them. As for the spine - it depends on where the metal is. The area measured by the DXA is L1-L4. If the metal is in the thoracic or region, the spine can be measured. The forearm can also be measured. That said, your daughter would have to go somewhere where a pediatric data base was available. Standard DXA testing does not compute for women under age 20.

A diagnosis is also given for post menopausal women and men over age 50 who present with a vertebral fracture and/or a nonviolent hip fracture, regardless of DXA score.

Given your daughter's spontaneous broken femur, it would be a safe bet that her bone density is low. Also keep in mind that her bones are still growing and anybody's score would be low if they haven't reached their peak bone mass.

I don't know about the Ossentia. It sounds like a scam to me and is very expensive. I think I'd avoid it. For sure she needs the calcium and Vit D. Make sure the calcium is taken throughout the day. The effect of bisphosphonates on premenopausal women is not really known, mainly because there isn't enough of a population to measure. The biggest risk is in birth defects of any children that might be born.

I would talk to the doctor about birth control pills as a help for bone density, combined with the calcium and Vit D. In about 10 years if her condition warranted, you could consider Fosamax. By then she would've reached her peak bone mass and the Fosamax could strengthen that bone.

Is your daughter physically active? Some instruction in body mechanics to avoid fracture might be a good idea too.

I just think she's young for Fosamax, that Ossentia is not regulated and iffy and that BCP would be her best bet. Not the Depo shot though - that depletes bone mass.

That's my opinion
 
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mountainmom48 replied to bonebabe's response:
Thanks so much for your opinion. Well, I guess the scan doesn't offer much in light of what you said. Her fusion is L1,2,3,4. Metal in both hips. I'll ask about the forearm. The pharmacist offers a wrist scan (think its the wrist, not forearm). What do you think of that? I am interested just so I'd have something for myself. For now, the endo is waiting six months to see if her labs go up for Vit D and Calcium. We'll talk about another scan (possibly forearm) at that point. The pharm is a friend of mine and is offering his scan for free and the repeat on down the road. I realize it may not be definitive, but I would like to see some measure.

Good to know the biggest risk of bone building drugs is birth defects. That isn't a good side effect; forgive my insensitivity. I mean that isn't an issue since my daughter is on BCP and for now is not and has never been in a relationship at all. I'm glad you mentioned BCP. She has been on BCP for about five years now.

I asked her orthopedist (who does not manage bone density) and he said he has had some patients treated with just a six month course of fosomax type meds and has seen some improvement. I might ask the endo about that next time.

My daughter is as physically active as her disability allows. She will be meeting with a physical therapist soon to come up with a doable weight bearing program.

As always, thank you for your valuable point of view.
 
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bonebabe replied to mountainmom48's response:
You said your pharmacist is a friend of yours so I'll temper my reaction to his suggestions in light of that. What I will say is that it is exceedingly obvious that he knows Nothing about bone density testing. What he is offering is not a bone density test. It is a peripheral screening that is offered to anyone who cares to purchase it with the objective of a moneymaking sideline. It is the same principal as the heel test.

These tests, when used properly and with an understanding of the results interpretation, can be valuable tools. They are not diagnostic, they are designed to be used on women ages 40-65 and are a once in a lifetime test. The goal of this screening is to see if a person who doesn't present with any reason to have a DXA shows a score low enough to warrant one. They are not sensitive to be used as followup testing. In other words, you can't have one this year and in two years have another one and say, "Oh, I've improved." The machines don't work that way.

For him to offer it for free is nothing. It shows his lack of understanding of the testing process. Because these machines do not have to be operated by a certified rad tech or nurse, anyone can push the buttons and get a T-score printout. My personal opinion is that they are used willy nilly and give people a false sense of security if their score isn't "too bad."

Now I'll get off my soapbox.

Glad your daughter is on BCP and will be seeing a physical therapist. And I totally understand your reaction to the Fosamax statement. I'm with you there.

Speaking of Fosamax - it cannot be correctly measured after 6 months of use. Because bone is so slow to respond to change, a person needs to be on it at least 2 years to measure any change. Also the only way to measure change is to have a DXA (which your daughter can't) and two years later have a repeat DXA at the same place and compare the two results. That will tell you if the Fosamax is working. Nothing else will.

I think you're doing what you can at this point. As I said, her bones are still growing. You really don't know what you'll be dealing with by the time she's 25-30 and has reached her peak bone mass. That's why it's vital that she pack in the calcium and Vit D now to build up that bone.


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