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tina72
Hi all,

I just come back from 2nd dexa scan (first was in year one about 6 months after diagnose) with my now 19 year old d. Bone density loss is worse than 2 years ago, although she adds vitamin d, although she eats a lot of diary every day. Periods are back also.

To those in the early days: please check bone density. My d restricted "only" 9 months and is eating normal for 2,5 years now and still has bad bones.

To the old rabbits here: any ideas what I can do? I think of taking her to a specialised osteoporosis doc now. Anything else that I could have missed?

It shocked me a bit today as I thought this is only a check and I was totally convinced that the doc will say "all well, you do not need to come here again". I never thought it could be worse than 2 years ago now...
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
I agree with you taking her to an endocrinologist is probably a great first step. There are lots of nuances to interpretation of bone density. Has her Z score decreased? How about her T score? Has the absolute bone density decreased or has it increased but not as much as expected? 

As for what to do, other than review and making sure that she is a good weight, regular exercise as well as the calcium and vitamin D I am not sure there is much else you can do. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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scaredmom
You have done all you can. You fed her to health. I don’t think anyone missed anything. 
There are other causes of bone loss that are not just nutritional/Anorexia.  There is juvenile osteoporosis. You do not say if her BMD (bone density )is in the osteoporosis range,  or if low normal or low. They use z-scores for her comparison to age and that is important.  
Celiacs is one that comes to mind for a young person with low  or dropping BMD. One does not have to have GI symptoms to have malabsorption so it can be quite ‘silent’ in that regard. Hyperthyroidism as well. 
I do think it best to see a specialist for an opinion.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
Please note as well, it is best to have the measurements done on the same machine as best possible as there can be some variability between different machines. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
I agree with you taking her to an endocrinologist is probably a great first step. There are lots of nuances to interpretation of bone density. Has her Z score decreased? How about her T score? Has the absolute bone density decreased or has it increased but not as much as expected? 

As for what to do, other than review and making sure that she is a good weight, regular exercise as well as the calcium and vitamin D I am not sure there is much else you can do. 


BMD has decreased from 1,160 g/cm² to 1,075 g/cm². Should be 1,24 g/cm² at her age.
There is no Z score or T score in the papers, just BMD. Spinal column same results as hip. I must ask for Z score and T score.

The doc there said as long as it is above 1 it is no osteoporosis. So slightly above that at the moment.
What scares me a bit is that the results decreased although she is eating normal for 2,5 years now (and all diary) and has 20.000 IE vitamin D weekly in addition.
No genetic osteoporosis in our family.
Keep feeding. There is light at the end of the tunnel.
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tina72
scaredmom wrote:
Please note as well, it is best to have the measurements done on the same machine as best possible as there can be some variability between different machines. 


Same machine, same place and same doc as last time 🙂.
Keep feeding. There is light at the end of the tunnel.
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deenl
Tina, I am so sorry for this unexpected result. But so glad that you are having it checked and I know that if there is anything that can be done, you will do it.

Hang in there,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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melstevUK
Hi Tina, 
I really don't have a lot of knowledge around nine scans and bone density. I know that my own d lost bone density in her thigh bones after restricting. I didn't really understand the implications of all the figures .
However, over the years, and she was a lot sicker for much longer than your own d, she had falls from horses but no bone breaks. 

I imagine that restoration of bone density takes literally years rather than months so that, although it looks as if there has been a worsening in your d s case, it is possible that although your d was starting to eat and put on weight, the bone loss had started and was progressing and didn't actually start to improve right until the moment she was weight restored so that you get a downward trajectory until the very point that weight is back to where it should be. 
Of course, there may be other factors involved. But I think that an improvement and restoration may take years rather than months. It is worth asking the specialist what the measurements mean in terms of bone breakage potential. You may find that the risk is actually negligible in reality. You probably need help in interpreting the results.

Believe you can and you're halfway there.
Theodore Roosevelt.
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debra18
It seems that most of these things have a delayed reaction. Like hair loss after WR.
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Kali

Hi Tina72,

I am sorry you have had this unexpected worry about your daughter's bones.

I have osteoporosis and osteopenia, and am by no means an expert or a doctor however this is what I understand to be the measurements when I look at my scores:

  • A T score of -1 to +1 is considered normal bone density.
  • A T score of -1 to -2.5 indicates osteopenia (low bone density).
  • A T score of -2.5 or lower is bone density low enough to be categorized as osteoporosis.


I don't know however, if the scores used in the US are the same as the ones used in Germany. But as others have mentioned, it is best to speak with an endocrinologist about the specifics. One thing they do with me is that they do blood work to test my vitamin D levels. 

And even with my low scores, I have only broken one bone in my life. A toe. And that was after banging it very hard against something and I am sure anyone would have broken it if they banged it like I did.

Kali

 

Food=Love
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tina72
"You probably need help in interpreting the results."

You are totally right with that, it is just so sad that I need to search for that help again as nobody seems to be common with pre-menopausal osteoporosis here.
The first scan was at WR and now 2 years later. We will have the next in 2 years but I am afraid that it will go backwards further if we do not do anything now. First step will be to see an orthopedist next week that hopefully knows something about the results and to ask her GP to check calcium as well as this has not been checked at all up to now because he said she is eating enough diary and drinking mineral water in addition with lots of calcium in it. But as magnesium and zinc disappears somehow in her body and needs to be added still it is very likely that calcium disappears too.

What concerns me in addition is that hair loss is there again after it had stopped for about a year. She lost very much hair in year one but it stopped about 6 months after WR and now it is more hair in her brush again...

Mostly I am frustrated that all the research work and what to do is on my shoulders again and I cannot trust anybody here with information or that they do the right thing. I would love to have one doctor here that knows what he does and is an ED expert.

Thanks for your ideas/help.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Here an orthopedist would be a term for a doctor who operates on bones. The specialists who treat osteoporosis are endocrinologists. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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tina72
That is different here. An endocrinologist only works on hormons here. We have an orthopedist that works on bones and skeletton and muscle issues (if you have back pain or something like that). And a few osteologists that work on osteoporosis. Our orthopedist we will see next week calls himself an osteologist too so hopefully that will be the correct place.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Endocrinologists also only work on hormones here too, but because bone metabolism is governed by hormones they manage osteoporosis too. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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scaredmom
You may find this useful.
https://www.bcm.edu/bodycomplab/Applications/BmdZ/hollunbmdz.htm
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
That is helpful, according to that she is on -1D. Now I need to find out what that means 🙂. And what we can do to get her on the green line...
Keep feeding. There is light at the end of the tunnel.
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scaredmom
That would be considered normal for age. That is her z score. It matches her age appropriate BMD to her peers.
so between -1 (Standard deviation: SD) to +1 is considered normal.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
But the doctor in the radiology said it is concerning that she lost more density in the last 2 years although eating normal and her bone minerals are in deficiency. Maybe the numbers are different here. I need to find out. I think if it was normal they would not have send us away with papers for the GP and the orthopedist/osteologist saying there is a deficiency and asked her to come back for another scan in 2 years.
I would have hoped it would be normal now but it does not seem so according to the papers we got.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
There are studies in the last few years that show that even with WR and more they do not necessarily get back to a normal BMD, unfortunately,
Here is a study that may be helpful to you. 
Although we are taught and told that WR will fix the bones there is more to it than that. And in this study even at 3 year, there BMD are not perfectly normal
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5626930/

As she is in the normal range there would not be meds to help this either as they are only used if absolutely necessary. 

In this study the fat mass seemed to be helpful. 
Of course you are worried, I understand that. It will be good to get an opinion for sure. 
The numbers are the same everywhere. They are standardized. That way all bone researchers can "talk" to each other in the same medical language. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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sandie
Hi just to say paediatrician here likes vit D blood levels higher than normal in kids with ED.
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scaredmom
Please note as well, the studies of BMD and Anorexia are very sparse and they are very small and it is hard to draw conclusions one way or the other RE WR and normalizing BMD. Some show that WR does increase BMD some do not. This is an area where more research in larger populations is needed to get conclusive information and for children there is even less info.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
sandie wrote:
Hi just to say paediatrician here likes vit D blood levels higher than normal in kids with ED.


This is what our GP also aims for but very hard to increase here. She was at 7 ng/ml when she went IP 2,5 years ago and is now on 32 ng/ml and he wants her to be around 50-70 ng/ml. Although she is on 20.000 IE/weekly and is a lot outside in daylight 🙂 this increases very slowly here. I think it will need another 2 years to get her on 50-70 ng/ml.
Keep feeding. There is light at the end of the tunnel.
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tina72
I also read about these studies that they are often not able to get back on a normal BMD. Another toll they need to pay for having AN.
But also shows how important it is to check bone density. I do not understand why this is so often not done.
Keep feeding. There is light at the end of the tunnel.
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atdt31_US
I would not stress too much about it.  Focus on doing the things that have a good chance of continuing to improve bone density (exercise in moderation; no smoking; good nutrition).  I know your d is much older and through puberty, so it is different than my d ... but, at some point, those are just numbers.  I don't mean that harshly.  I sometimes wonder what my non-Ed d's bmd is .. maybe it is also low but since I don't know it, I don't worry about it.  I do know my ED-d's bmd and that has brought worry and also probably wisdom to move faster on nutrition than what her doctors required ... but, she has had a bone expert (metabolic doctor, not endocrinologist) involved and he has been content to see what happens over time ...  one of the key things has been that she has never had a fracture.  If your d is getting fractures, that may increase the vigilance and perhaps cause a bone specialist to consider meds ... but the meds in this arena are far from magic bullets and have significant down-sides.  

Again, my d is pre-pubertal so some of the analysis is no doubt a bit different.   At 8 years of age her spine bmd was .467 (-2.6 z score).  At 9 years of age it was .489 (-2.7 z score).  At 11 years of age it was .528 (-2.5 z score).  In asking our bone specialist to help interpret what these mean, he said the raw bmd number  (the .528 number) is more what they look at than the z-score to see if the trend is good over time.  My d's bmd was trending up -- so despite the z score not looking like it was getting much better, the bmd was going in the right direction.  Still very low .... but still no fractures.  Also, the amount of movement in the bmd number from the 2014 to the 2015 test was deemed clinically insignificant because although not identical, they were close enough that in essence it is viewed medically as no change (I do not know if the 2014 to 2018 movement is significant because we did not discuss that specific question).  My point is, these numbers are not going to have clear cut offs and one fraction over or under the line will not make a huge difference in actual health.  

Finally, I am reassured by my own bmd history.  As part of a health fair at work, pre-pregnancy (in my early 30's) I tested as low on a screening thing and went for a real DEXA and was osteopenic. Post pregnancy I re-tested (in my 40's) and was in normal range ... so increase is still possible even as adults.  

I am not saying ignore it.  I am not saying don't go for a specialist to help interpret it and guide whether future DEXAs are needed and/or if the bmd is suggestive of some other metabolic/digestive issue at play.  I am suggesting that if her health is good, her nutrition and eating are good and normal and appropriate for her history, if she is not having fractures, if she has no other signs of metabolic disease .... put this in the "monitor" pile and love the life you guys have worked so hard to reclaim. Enough hours of worry have gone into her and until a specialist in bones and bmd sounds an alarm, enjoy your time and rebuild that normal life we all interrupted with ED.  

I have been interrupted by kids five times while trying to draft an encouraging and supportive post... I hope it does not come off as uncaring about her bone situation.  
 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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tina72
Thanks Atdt31,
I did not get that wrong at all, I appreciate all your ideas and support. You are maybe correct that I would not worry about it if I did not knew it. 🙂
Compared to your ds values it is really not bad, only thing that worried me a bit was that it decreased a bit (your ds values increased a bit during refeeding).
I think I will try to not worry about it but check calcium and see a specialist if calcium is normal. At the moment I hope there will be a calcium deficiency (although she is eating lots of diary) and then we would know what to do.
Thanks a lot that you took time to reply although you were interrupted by the kids!
Keep feeding. There is light at the end of the tunnel.
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