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My 2 boys were diagnosed yesterday and i don't know what to expect!!!
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mom2TWOboys posted:
I have two boys
CJ 16 yrs old 5'10" about 150 lbs has broken or fractured over 20 bones and 1 major surgery requiring plates and screws. DEXA scan. T score spine -1.7 neck -1.1
TJ 14 yrs old 5' about 85 lbs has broken or fractured around 10 bones. Had a DEXA scan. T score -2.3 in spine and hip.
I am worried and not sure what to expect next. What questions to ask the Dr when they get an an appt. My kids are very active outside (where 99% of the broken bones have occurred). They eat a lot of green vegetables (collards, mustard's, turnips) and drink a lot of milk. If there is junk food/ sodas in the house there is a 1 a day limit but we don't have that stuff very often, tea is drank daily. All lab work the Dr had done came back great.
CJ takes no medications and is very healthy, just found out his wrist was not broke but MRI showed he has a ganglion cyst in his wrist(no action taken) and he has had his knee drained before.
TJ takes medications for ADHD and to sleep, and he has slight scoliosis, besides that he is healthy. They are always on the go so they get plenty of exercise. we eat a lot of cheese, milk, fish, greens, chicken every month.
i am wanting any help i can get as we start this journey to their bone recovery.
Questions i should ask the Dr? (we are being sent to a Dr in ATLANTA) not sure when yet
What we will be looking at, as far as possible treatments?
What i should change at home?
if medication is needed what is the best one? i don't want them on a medication that stores the dead bone to make the test look better, would rather one that speeds up the bone growth..if that's possible.
I have read a lot today after i got the call from the Dr office, i am thinking that was the wrong thing to do but i am so worried about their feature.
They both want to join the military when they grow up, Can they with this?
Thank You
is there anything else i am missing? or should be concerned about?
any advice is greatly appreciated!!!
Reply
 
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mom2TWOboys responded:
Sorry.. Was Diagnosed with Osteopenia. i know its just a name for fracture risk.. but i don't have enough money for all the bubble wrap these boys need hahaha so now we are looking for alternatives.
 
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bonebabe replied to mom2TWOboys's response:
All kids will test with osteopenia. It's because their bones are still growing. This in itself is nothing to worry about.

Why were your boys tested? Routine testing of teens is not done unless another illness that would lead to bone loss is suspected.

How were their bones broken? Football? Rough play? Falls from above ground? Violence? If the bones were broken from a standing position (without them being slammed into by someone) that is a red flag. Sports injuries aren't a big deal unless they're multiple occurrences.

Why does their doctor want them to see a specialist? Is there a genetic predisposition to fractures?

If they're outside a lot, get plenty of calcium in their diet, aren't on corticosteroids, don't have a genetic factor, other illnesses have been ruled out, I wouldn't worry too much about this. That being said, I have to say I'm not a doctor and I don't know their medical history.

Go online to the National Osteoporosis Foundation website (www.nof.org ) to get some more information and talking points for your doctor visit.
 
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mom2TWOboys replied to bonebabe's response:
They were tested because of the amount and how often they have had broken/ fractured bones. they have been fractured/ broken from- swinging on a low swing and hitting the ground (tail bone), horse play (elbow, forearm, fingers), jumping a creek (ankle requiring plates and screws), knee and 1 bone to foot (bicycle wreck), collar bone, toes, ribs, knee boarding (1 upper leg bone), feet, neck.. we know a lot of people in the ER due to visiting so much.. i always just thought my boys were just rough till the Dr brought it up.
She doesn't know where to go or what to do so she would rather us see someone else.
They do not play sports. no test have been done except some lab work. she doesn't know if their is any deficiencies. she is just going to let another Dr do what ever test they see fit.
thank you for your help, i actually feel better knowing all kids will test with osteopenia, and not just mine. and thank you for the link, i am going to check it out.. any other information is greatly appreciated..
 
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bonebabe replied to mom2TWOboys's response:
While those are a lot of fractures, none of them sound like nontraumatic fractures, according to the criteria.

With both of them doing this, it may very well be that something genetic is going on. I would certainly ask that their Vitamin D levels be checked and ask for a referral to an endocrinologist for a thorough workup.

I'd also look on the ISCD website, www.iscd.org , under the Certification tab at the top, then click on Registry and look for a CCD in your area. That's a doctor who's certified as an osteoporosis expert clinician. That may be a starting point. Many of them are endos and rheumatologists.

Make sure they're consuming enough calcium, especially at this age. They will reach their peak bone mass around age 25, so you want to be sure they're building up bones now. I'd give them a calcium supplement at supper. Maybe try one like Viactive, which is almost like dessert.

I know this is worrying you. Hopefully the specialist can give you some answers.
 
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mom2TWOboys replied to bonebabe's response:
THANK YOU SO MUCH!!!! i will definitely get them some Viactive.
 
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mom2TWOboys replied to bonebabe's response:
just an update. We went to see a Dr yesterday who specializes in spine and hip. he ordered.. urine calcium, parathyroid hormone, growth hormone, Comp Metabolic Panel(14), Renal Function Panel, CBC w Diff w Pit, Albumin, Alkaline Phosphatase, Calcium, C-Reactive Protein (CRP)-Quant, creatinine, FSH and LH, Glucose serum, LDH, Magnesium, Phosphorus, sed rate - westergren, testosterone - total, TSH-3rd generation, vitamin D-25-Hydroxy. and he is sending them to see an endocrinologist.. i would like to say thank you so much. if it wasn't for talking to you i would have been lost when the Dr was talking to us. you gave me so much incite before our appointment.
 
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bonebabe replied to mom2TWOboys's response:
You're more than welcome. Thank you for your kind words. Good luck to you and keep us posted.


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