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04-16-2013, 12:25 AM   #1
upsetmom
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Bone Density Scan

I was wondering if your child has had a bone scan and if so how often do they get it done?

My daughter had one done today. We were told she needs to have one done yearly.
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Last edited by upsetmom; 04-16-2013 at 05:12 AM.
04-16-2013, 07:22 AM   #2
Devynnsmom
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Devynn has never had one. Did they say why your daughter needs it yearly?
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-16-2013, 07:45 AM   #3
upsetmom
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No...he didn't tell us any results.

I was a bit worried that he might have seen something.
When the scan was being done he stopped the machine at the upper leg/pelvis area and then moved the machine down again and took a few photos ..i was trying to look over his shoulder..from what i could see it was straight bone and then a slight bump ..i don't know if this was normal or not...Then he started questioning me how many times shes been on pred and for how long.

We were going to pick up the results before we saw the GI late next month..but i'm going to get them as soon as they are back, i'll ring tomorrow and see how long they take.

I thought it might have been routine getting it done yearly.
04-16-2013, 08:01 AM   #4
Devynnsmom
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It could very well be, where you are. Devynn's doctors have never mentioned it, but she's never been on pred either. I think my Dad had a few bone density scans, and he was on pred for years. Try not to worry, I know.. easier said than done. I'm sure they are just being proactive. ((((hugs)))))
04-16-2013, 09:21 AM   #5
CDJ
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Josh had a bone density scan when he was first diagnosed, but not had another one since then.
04-16-2013, 11:37 AM   #6
my little penguin
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DS had one last year.
They like a baseline .
That way they can treat if there is thinning of the bones.
Most crohn's kids need one just from disease and definitely if they have been on pred
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04-16-2013, 11:18 PM   #7
upsetmom
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OK now i definitely think something is wrong. When i booked the scan i was told i had to pick up the results as they didn't deliver them. Yesterday i told them i wouldn't pick up the results for 6 weeks and they said they'd hold on to them. I just rang up to see if the results were ready and was told they've been delivered to the GI ..i asked if something was wrong and he said i can't say. I've just left a message with the nurse to get back to me.. I'm so worried.
04-16-2013, 11:34 PM   #8
Mehita
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Doesn't a bone density scan just measure your risk for fractures?

Try and relax, upsetmom *hugz*... I know it's hard not to worry. Did they call back yet?
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04-16-2013, 11:39 PM   #9
upsetmom
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Doesn't a bone density scan just measure your risk for fractures?
I'm not sure this is the first test shes had done.

I'm still waiting on a call..
04-16-2013, 11:55 PM   #10
CDJ
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Try not to worry. I know when Josh has had tests we never get told over the phone what the results are. We have to make an appointment to see the consultant to discuss them. That could just be what this is.
04-17-2013, 12:40 AM   #11
Hope345
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Upsetmom
My daughter had her first baseline a couple months ago too. It just gives them something to look back on in the future.

i hope everything is okay. Let us know when you hear something.
hugs to you
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Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
04-17-2013, 12:54 AM   #12
CarolinAlaska
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"I can't say" probably means, "I'm not allowed to say" (what the report says to the patient over the phone). It doesn't mean anything. She's going to be fine.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
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04-17-2013, 02:26 AM   #13
upsetmom
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Its 5.30 and no call or e-mail....shes probably gone home.

I'm trying not to worry.... It wont change anything.
04-17-2013, 04:26 AM   #14
my little penguin
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Bone density is just that a risk of fracture.
It will be ok
04-17-2013, 04:29 AM   #15
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My son had the dexa scan when he was first diagnosed 3 years ago and hasnt had one since. xx
04-17-2013, 06:24 AM   #16
Catherine
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When results are bad you usually quick response and phone calls. Until proved otherwise assume the results are good and follow up after a couple of days

I hate waiting too.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-17-2013, 06:29 AM   #17
upsetmom
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Thanks everyone... i don't know what i would have done without you.
04-17-2013, 06:33 AM   #18
Niks
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Agree with Catherine. If bad, they'd have you straight in to discuss.

We've been asked by a few people including dietician whether J has had a bone scan, but she never has. I think they like to keep tabs on their bone density xx
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04-17-2013, 06:38 AM   #19
crohnsinct
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O had one at dx in hospital and we were told they would be done yearly due to meds and disease. Doc hasn't mentioned it again and it has been 14 months and one bone fracture later.

I hope you got the return call so you can feel better about things. Doesn't matter what our head tells us...our heart worries.
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Crohns & Remicade induced Psoriasis
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Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
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04-17-2013, 09:17 AM   #20
ChampsMom
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My son has had one and is scheduled to have one every 18 months to 2 years. Our GI said that it is common for kids with Crohn's to have low bone density (especially if they are not processing/absorbing vitamin D well). Alex' Vitamin D levels are conistently low - he had his first last year - and the doctor said his bone density was on the low side (though the tech who did the scan said he looked great!). When I asked what that meant, she said that he was more suspectible to bone breaks (to which I had to swallow hard!).

I asked her - does that mean he shouldn't play ice hockey? She's from India and asked us, "Well... as long as he's not getting hit hard, he should be okay..." Alex and I just looked at each other and say, "OK". She obviously doesn't know alot about ice hockey... We (Alex and I) talked about the results, but he said he'd rather play with the possibility of getting a broken bone, than not play. (touch wood - thank you God - no major injuries!)... Whew...
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Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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04-17-2013, 04:30 PM   #21
upsetmom
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Shell now that you mentioned Vitamin D my daughters was always low . She was on supplements for a long time.

Once the bone density is low does it stay low or can it be improved.

7.30am half an hour till the nurse starts work and i'll be ringing her again.
04-17-2013, 06:45 PM   #22
AZMOM
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Claire's had only one bone scan - just after dx. But, her vitamin D levels are normal.....wonder if that's why he hasn't repeated??
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Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
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04-17-2013, 07:20 PM   #23
Johnnysmom
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Johnny had one a year ago, it was normal. It was called a Dexa scan, I am assuming that is the same thing?? He was on Pred for 3 months and was having leg pain. We got a message from the Dr that he is due for another so I do think they like to do them yearly.

I wouldn't worry too much, bone density is something that can be improved and it just means that they may avoid Pred in the future or have her take extra calcium, and Vitamin D3. I don't believe it is serious unless it goes unchecked for many years.

Sorry you haven't heard from your Dr. yet, it is always such a worry to have them order tests and then not respond.

((((Hugs)))) and hope you hear soon!
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Dx Oct 11 2011 Crohns disease
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04-17-2013, 07:26 PM   #24
Lisa
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I don't ever recall having one as a child....but that was umm...many years ago....I had one done over 15 years ago, and then one around my last flare - which was almost 8 years ago now....no mention of having regular ones....
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04-17-2013, 07:31 PM   #25
upsetmom
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The nurse had a look on the computer and told me the results were there...she said they normally don't deliver the results but when she opened the folder she said there was nothing there. So she thinks that maybe they haven't been delivered or they might have been sent straight to the DR. She told me she'll chase it up tomorrow. So now another day of waiting..

Blood results were all good.
Hand x-ray showed that my daughters bone age is close to 13.....shes 15 and 7 months.
04-17-2013, 07:33 PM   #26
my little penguin
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That is actually good . A younger bone age means she still has time before the bone plates close -so she can keep growing until then.
04-17-2013, 07:39 PM   #27
upsetmom
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Shes quite tall at the moment...166cm
So i wonder how much taller she'll grow..
04-17-2013, 07:48 PM   #28
upsetmom
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Johnnysmom it was a Dexa scan.
04-17-2013, 08:02 PM   #29
valleysangel92
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I had my bone density scan at 17 (now 20) and it came back low.. Normally when that happens they give you supplements for calcium and vit d. But i wasnt allowed them.. The questions they ask all go in to calculating someones risks of a fracture, its not anyhing to worry about, if there are any abnormalities, your daughter has plenty of time to have treatment to reverse the effects before her bones reach their peak density (mid 20s-30).. My drs have said my scans will be repeated every 3 years but that was before all the steroids and partly due to my limited options for treatments and due to living in the uk
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

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04-17-2013, 08:45 PM   #30
Tesscorm
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I'm with everyone else, try not to worry... even if treatment is necessary, bones can be strengthened. I had juvenile osteoporosis as a child (no crohns), I was beyond just a 'risk for fracture' and, even at that point, it was simply treated with vitamin D and calcium (and, at doctors' recommendation, a summer in Portugal at the beach soaking up the sun and vit D! ) As valleysangel says, there's lots of time for her bones to strengthen.

But, it's so hard waiting... I hope you get a clear answer tomorrow!
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