Hi Pam
This was a very informative and enlightening interview. I had no idea this could be an issue for children either. I imagine that this is probably one of the few health sites where such information can be found.
Thank you and Dr. Gordon for this interview. I am sure there are parents out there who are appreciative that you are talking about this health concern.
One thing that struck me...was the Vitamin D deficiency. I have this...and I wonder if I should get my kid's Vitamin D levels checked.
Hi Merely Me: Thanks for joining us and for your wonderful compliments on this interview. We do get some questions from Mother's here at OsteoporosisConnection.com about this disorder, but the main concern seems to be where you'd find a Dr. that would treat this. Also, it can be very hard to diagnose, if you don't have a specialist who is willing to look at things other than normal childhood fractures, and think outside-of-the-box.
I've always been interested in this topic, and wanted to write more about it because so many are at a loss for treatment, and they feel so alone. I see a Dr. that treats this at a Univ Hospital that is also a Osteo Research Center, and I have to tell you that it just breaks my heart to see children as young as 3 or so in wheelchairs, with many limb braces and all hunched over. Luckily my Dr. treats Paget's disease, osteomalacia, osteogenesis imperfecta and IJO in children.
I would definitely have you children's D level checked. According to the experts on D, MOST Americans are D deficient even if they take D and get sun. Because we use sun screen so much now, we don't get a chance to get in 15-20 minutes of skin exposure. The experts tell you to use sunscreen after you've been in the sun for 20-30 minutes without it. If you do have problems with skin cancer or other skin disorders you have to be careful, and time the non-use of sunscreen properly. So, I would have those levels checked, what can you lose. You'll at least find out where you kids stand with this and then dose accordingly with D3 or get some safe sun. Never stay in the sun longer than it takes to produce a slight pink skin color.
Keep in mind that these recommendations are for adults, so hopefully your Dr/lab will be able to tell you what the reference range is for children and adolescents.
Thanks for joining us and I hope you find out that your kids have a level that is in the normal range.
Many thanks to Pam and Dr. Gordon for raising awareness of IJO. As the parent of an IJO patient, we are grateful to all those who work on behalf of these children.
I would encourage all parents with young children to test for Vit D, especially if there is any type of fracture history. As important, I would enourage parents to really educate themselves and their children about the importance of good bone healthm including food choices and activities. The Best Bones Forever campaign mentioned in Dr. Gordon's interview is a wonderful place start.
Thank you again, Pam and Dr. Gordon, for increasing awareness and caring about these special children.
Hi ijomom, you are very welcome; and it was our pleasure to interview both Dr. Catherine Gordon and your lovely daughter. I hope this interview and Rachel's will help to spread awareness of this disease, since so much more research needs to be done on it. Hopefully some day we'll be able to say we know what causes it and how to treat it in all the patients that present with this.
Thanks again,
Pam
My son Fx his L hip in a fall which lead to IJO diagnosis at age of 12. After 4 surgeries since, just been told he will now need an replacement! How will his bones accept this hardwear?? Been on Foamax for almost 6 years with liquid ca and vit D daily. Live near Phila. Dexa scan shows no real improvement in past 2 years. Looking for how to find more up to date info... or just some heartful support
Hi beachladyblues, welcome and so sorry to hear about your son! Dr. Gordon may know of a support group for this, so I'd contact her office (info included in article) and see if that is the case. If not, you could at least talk to other mothers dealing with this. See the interview I did with Rachel and you might think about reaching out to her Mom and see if she knows of any groups. At the very least Childrens Hospital in Boston should be able to direct you to a support group - I hope!
Contact the hospital through this article and here's the link to Rachel's interview an astounding young lady dealing with this and has been since she was very young. There was also another mother who posted in the comments of Rachels' interview from England that has a daughter with the same diagnosis. I don't know where you live but at least this gives you two options.
It is really important to see someone who specializes in this because since there is no known cause for it, and all secondary causes for osteoporosis HAVE to be ruled out, making it a dx of exclusion.
Good luck and post again if you need further help.
The fracture of hip lead to AVN which followed by 3 more surgeries- Trocantor advancement, growth arrest of R leg due to LLD and the the impingement release which intitally was great. He just entered freshmen year of college, was walking about 25-30 min to-from campus. C/o of pain was slow(sadly) for me to pick up due to the autism issue and lack of perception of pain. So, most likely, he has been in pain quite a few weeks... So, I'm a parent on a search for answers......
I again, I know you won't give up so just keep looking for whatever you can find! I hop the links I gave help some and don't hesitate to contact Dr. Gordon, even though you son isn't a child anymore. Sorry to hear about the other problems, and I wish you all the luck.
It must be hard on you both to have to deal with this under these medical circumstances. Sorry he had AVN too, that must have been tough-WOW. I just hope the surgery and implant will work well for him and it helps with the pain.
If you need anything else don't hestitate to ask, and we'll do our best. We also have an Aspergers/Autism site to if you want to connect with parents there. Several of our employees have children with autism, so look into this as well if you think it might help.
Take Care and you'll be in our thoughts and prayers!
to AVN post L hip fx at age of 12. He has had 4 surgeries in hope to delay replacement. Was in college but walking begain to caues severe pain. So he is home and was told by surgeon impingment did not work(1/11 surgery). My question is have this been done before(JIO and hip replacement)?? If so what has been the outcome?? So many questions unanswerered!! How do I help when I have no answeres?? Please help. I would be grateful for any guidance!! Please Help... Thank You I am a very loving mom.. P.S. My son also has Aspergers Syndrome (He is very bright; year honor roll HS but had to be returned home from college due to pain and a very real fall issue with winter weather..) Please share what you may know Just a parent seeking direction.. Thank You Pamela Klenk 609-938-0757
Hi, have you contacted or tried to make an appointment with Dr. Gordon in Boston? I'm not sure where you live, but it really sounds like you need expert help if you are dealing with avascular necrosis. Is that what you mean when you use the acronym AVN? If you can't get help there, I'll look into another specialist for you but I need your approximate location.
By the way, it's not the best idea to post a phone number or personal info on any web site.
I'll try to find someone in your area once I know where that is. It sounds like your on the East Coast, but not totally sure. Send me an email (for the location) and I'll post a list of specialists that handle this and the type of surgery you mentioned after I get the location from you. The list will be coming from the National Osteoporosis Foundations list of doctors in your area.
Good luck to your son and I hope you can find help asap! Hang in there!
Pam
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Dear Pam,
This post is a great education in itself. I never even knew that children were prone to osteoporosis! This valuable information which you ave provided us. coming from such a leading authority on the subject, like Dr. Gordon, is a great revelation. All I can say is that I am filled with great awe and admiration for your efforts to get the best out to the world.
Thank you,
Yours,
Prtiya
Hi Priya, thanks for the interest in this topic, and your wonderful remarks. We wanted to bring more attention to IJO, since many haven't heard of it! Dr. Gordon is an amazingly dedicated physician and kudos go to her for treating and researching this type of bone loss in children and adolescents. As Dr. Gordon said, more research needs to be done on this, so let's hope that happens for the sake of these patients and their families.
Unfortunately young people get osteoporosis too!
Thanks again to you and Dr. Gordon...