Registered: 1452540147 Posts: 1
Reply with quote #1
I was wondering if anyone had any experience with osteoporosis and AN. My daughter got diagnosed at 12 and its been a battle but she has been relatively stable. She has had her periods consistently since they started at 13. Her weight has been on the low side. She is just under 5 feet and weighs 88 but the doctors have not been too concerned. She started college this fall and lives there and has maintained her weight. The doctor just decided to do a bone scan and found she has osteoporosis. we went to a specialist in Boston and she said it can happen even though she always had her period. Told us to get her weight up to 99 pounds but did not offer much else as a suggestion. My d was told no ice skating dance or other activities where she could fall. Any one been down this road? I feel like this has been a 7 year battle with no end.
Registered: 1431767540 Posts: 1,807
Reply with quote #2
Although we don't have an official diagnosis of osteoporosis we feel our d has it as a simple fall can result in a broken wrist(she has a cast on right now) .other falls have resulted in two arms in plaster and swelling.she plays no sport as she is still sick with anorexia.we have to encourage things that require no energy really or any sporting games.so no advice from us,just empathy on how much this sucks,and how much it robs from our kids.
Registered: 1401538763 Posts: 170
Reply with quote #3
We have a diagnosis of osteoporosis. He was checked to ensure that he did not have micro fractures of his spine, but he does not. If the micro fractures had been present he would have been medicated to replace the calcium.
As of now he supplements with calcium and vitamin D. The vitamin D was low so the dose was doubled. I have also been giving him more magnesium as all my kids seem to be short of magnesium. __________________ 18 year old boy (Gluten Free/Dairy Free 2005) IP - March/April 2014. ARFID. 2015 - Gastroparisis
Registered: 1369162411 Posts: 1,849
Reply with quote #4
Hi msmmom, and Welcome!!
It is an unfortunately common misperception, even in the medical community, that menses indicate adequate nutrition and weight. This is not so. Some sufferers retain their periods even when they are critically underweight, some sufferers have a return of menses long before their body returns to what is a healthy weight for them. MY d was one of these; her lowest weight was 109, her period returned at 122, her brain began to heal after a long time above 135 and she now weighs 142. (All at the same height.) It is also unforortunately not widely publicized that young women of normal health continue to gain weight long after they stop gaining height. IF you look at the growth chart for an average woman, you can see that after the huge gains at puberty, it continues to rise well into the 20's. Therefore, even if 88 pounds was adequate for your d at age 12, it cannot possibly be enough for her seven years later. This is why the battle doesn't end; her brain can't heal unless it gets adequate nutrition. My d had a bone scan when she was first diagnosed, and she was found to have mild osteoporosis. We got her weight up quickly and didn't have further problems with bone density, but it does make sense that, even if your d has her period, if she's not getting enough nutrition, that will show in her bones and organs and in her brain. The good news is that all these dreadful results of malnutrition are reversible! Getting her weight up is super good advice, I think! OF course, that is easy for the doctor to say, right. Most everyone on this forum knows how extremely difficult that is, and will be along shortly I am sure with advice and practical suggestions as to how to do it, if you would like. In the meantime, you may like to read all around this site, and search for posts regarding determining healthy body weight range, osteoporosis (I'm sure IrishUp will have written on that subject) and there is a thread for caregivers of young adults: Support for the college age/young adult crowd. Also, UCSD has a very highly recommended informational program (4-5 days intensive, I think) for young adults. And please feel free to tell us more about yourself and your d and your situation, if you'd like. best wishes, __________________ D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
Registered: 1365018010 Posts: 495
Reply with quote #5
Hello - another diagnosis of osteoporosis here, it is not mild and I've found this very hard to take as her mum. It really hit me hard as at the time she couldn't care less and as she wasn't WR for a further 5 months we knew it was probably getting worse at a time when she needed to be really taking care of it. Periods came back 6 months later so 11 months of watching D knowing it was getting worse not better. The wait for periods was bad as this was pretty much at the front of my mind.
Your daughter has maintained periods the whole time, which I've heard of but it's fairly unusual I'm told. Presumably this was without medical help ie contraceptive pill etc and presumably she really has maintained them for all of that time (I mean, how can you really know!!!!).
For the sake of others on the forum too I will share the general stuff we have experienced with "bones" generally...
I would urge all parents of anorexic girls to insist on the dexa scan early in the diagnosis. My D did not get one until just prior to her second admission when she was admitted in critical condition. It may be that this info can be added to "reasons to get well" with our children. My D did not care , others might though and sadly, she certainly does now. I think she feels sick about it now and I feel so sad . The good news, if you can call it that, is now that my D can think and talk rationally again (oh how good it is to write that - fingers crossed it stays this way!) , it is providing another reason for maintaining recovery , but what a price to pay.
Without periods the medical community can only repeat that they need weight and periods. You will get not much else from them as there is not much else to say.
In a young girl they cannot, or should not prescribe fosemax or other medication of this type. We were told clearly that it can cause birth defects (I think someone else has explained the extremely long half life) which is why it's given to post menopausal women only. We've been through enough and I pray that someday my D might have her own children to love and cherish.
Take calcium and vitamin D pills throughout. Get the GP to prescribe this early on even if a child is in the early stages of this illness.
To the original poster your D may still be growing if in fact the ED slightly stunted her growth. You can be tested to see whether growth plates had fused. Our Doctor was pretty certain that my D was done growing but I insisted on the test , they humoured me and were very surprised to find the that they had not and she has probably grown 3-4 inches since diagnosis - which is weird when you think about it but not weird when I say that this growth occurred in her two periods of recovery. It was like as soon as the weight started really going back on her body went into recovery mode and started to grow fairly immediately - it was hardly noticeable at the time until suddenly after six months it was, she was measured and.. another two inches each time. The second growth spurt caught us by surprise so watch out for that as I am sure shooting up in height whilst trying to gain/maintain contributed to her relapse as her target weight was set at one height etc etc.
I am told that if they have their periods, are WR to a good weight, and the growth plates have not totally fused there is a chance that the new bone laid down will be good bone, so worth checking that maybe ? It's a simple X-ray of the wrist.
Any info on osteoporosis in Ed in this site from others would be welcomed by me and I am sure others ... Anyone got any good news/results in 17-20 year olds?
Registered: 1380204986 Posts: 149
Reply with quote #6
I am surprised to hear that your d had a bone scan and was diagnosed with osteoporosis.
I am not a medical person but my d was a very very low weigh when she was 12/13. She had a bone scan and was diagnosed with low bone density. We were told that this can lead to osteoporosis but that as she was still growing she had a chance to heal the damage caused to her bones. I believe that if this happens to an older teenager it may not be possible to heal the damage. Our d subsequently ate well (we did family based treatment) and she took a large calcium supplement for a year. After a year she had a repeat bone scan and her bone density was normal. You say your daughter is as young as mine was and so I would think that with the right food and supplements she also could recover her bone density. __________________ Mum of recovering 16 year old daughter. 4 years into recovery.
Registered: 1365018010 Posts: 495
Reply with quote #7
Hi again - I think msmmom 203's D is 19 and this was her first dexascan. It is so good that your D got one when she was younger. X
Registered: 1378850821 Posts: 190
Reply with quote #8
Take a look at this Kartini Clinic article.
It contains lots of good info, particularly regarding the importance of both menses and weight restoration, and the dangers of exercise for someone with anorexia and low bone density.
Also read the response to the article by Ro deB
Calcium supplements are no replacement for calcium rich foods in people with low bone density due to malnutrition. __________________ HillBilly (formerly registered June 2012 under another name)