Juvenile idiopathic osteoprosis

New here and so very glad to finally find others w/ this issue! There is little out there and no support groups that I can find! My son is 19 yo post L hip fx age 12 that lead to AVN. He was Dx at that time w/JIO. After 4 surgeries (last on 1/2011 for impingment)now needs replacement.Was a freshman at college -walking just over a mile a day-c/o severe pain after 2 months and had to return home. Current dexa dispite po Fosamax is has dropped too low and told he needs a drug IV likeSomenta/Reclast. Are there any parnets out there who has the misfuture of their child Fx a major joint? Or recieve IV drugs for bone density?Unknown is how one will affect the other-seems to be a gray
area with surgeon and medibolic MD.Read the Somenta will decrease pain,something my son is not good at voicing but can tell he suffers from. He also has Aspergers Syndrome.

Report post

37 replies. Join the discussion

Hi there, I have an adopted daughter that was trying out for a marathon. She had a hip fracture as a result - walked on it for 6 weeks before the new Xrays revealed it (non-displaced). She has since then had a fracture of the shoulder , and ankle, and wrist. More studies revealed that she has Paget's Disease - genetical in cause - and because of her adoption, we did not have any idea of her background information. She is fine now as long as she remains fairly careful of overdoing. Whatever the reason for fractures, it is certainly concerning when it happens at such a young age. (She as in her 30's before all of this happened.) Her doctor is checking her dexa scans and doing blood tests, etc. At first, they did not put her on anything because her dexa scan was good despite the fractures. I don't know for sure what she is taking now. I have not heard of JUI before, but my heart goes out to you. I hope you find some answers. Charella

Report post

Wonderful to hear from you! Your daughter has been through much. Can I ask if she needed surgery for her hip? Did it take longer then normal to heal? My son Fx the hip just below the ball joint which caused not blood flow the the head of the femer.and ended up with AVN(erosion). All his labs are normal (Ca,Phos,PTH, ect.) dispite very poor bone density.He has also been tested for every sort of disease that may caues this issue-all negative. After his fall and Fx,he was Dx w/JIO. He used to be quite active .bike riding the favorite(due to autism his balance was never good enough to skateboard etc.). So all contact sports,any activity where he may be bumped into,bike riding had to go. He is a high fall/fracture risk. He has been on Fosamax for over 6 years now and it seen to be having the opposite effect-a side effect. He is on 2000mg of Ca and vit D daily with as much po calicium I can get him to take. Activity is necessary for the bones but due to the current shape of the hip he tolerates little. So was are traveleing a circle at the moment. Most kids w/JIO recover on their own after the acute phase,my son has not. Scary situation for your daughter and sad the MD's didn't take her hip pain serously. If hard to know just how much the bones can handle. Thank you for your note. Best wishes for you and your daughter.

Report post

Hi Beachladyblues: Is Boston Children's Hospital too far for you? There's a doc there that treats IJO (idiopathic juvenile osteoporosis). Here's her info: http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/a rticles-on-idiopathic-juvenile-osteoporosis/ I believe we talked before at another site, so I don't know if you already contacted Dr. Gordon or not.

Good luck with this and see if you can connect with other mothers using IJO in the "find it" box, above right, below picture, and send a friend request.

Report post

Yes. Sent letter w/ no response(who knows). I will try this site. I am in NJ and of limited income. I would do anything possible to find more solid answers and options for Tx. Thank you for mailing me (again). I remenber this. :)

Report post

Hi again...I think it would be better to call Dr. Gordon and ask if they have a cash payment plan or discount, if you are without insurance. Some hospitals will work with you, so don't give up, keep calling. Here's her contact info: http://www.childrenshospital.org/cfapps/research/data_admin/Site83/mainpage S83P0.html Just be sure to explain your financial situation and see what they might be able to do. The only thing, is your son is older than most patients she treats and I don't know if this would be a problem. If it is, ask if there is another Dr. that could treat your son.

I hope you find out something positive and hopefully a reduced rate, or payment option plan. Who knows maybe the Hospital has grants for payments where you'd pay very little, but I don't know that for sure.

Good luck

Report post

Hi again, Yes, my daughter did have to have surgery on her hip and ankle, and shoulder. They were definately afraid of avascular necrosis since it had been so long. She had it pinned as well as the shoulder and ankle. It did take longer than usual to heal, but she is doing nicely at this time. Restricting activity seemed to be the trick for her. I know she is on some meds, but she doesn't live closeby and I'm not sure of which ones they are. Good to hear from you - I hope there is good info out there for your son, too. Charella

Report post

My son was on a bike yesterday!! I friend showed up on a tandum bike and wanted to take him for a ride. First reaction is to keep him in that room of cotton! (Sad but true). I had to let him go. He has not been on a bike since he fX his hip at the age of 12. He returned after a spin around the neighborhood, pink cheeks and a broad smile. We went to the Flyers Wives Carnival today. He was able to play some games and a picture with The Cup. Most lines were long (standing too long hurts). Happy weekend!

Report post

Beachlady,

You say your son has aspberger's syndrome, but has he ever been tested for osteoporosis or celiac disease? I'm sorry to hear he's had fractures at such a yound age. If he has secondary OP (not post-menopausal) no joke intended, it could be caused by malabsorption condition such as celiac disease. That is what caused my OP. Good luck to you both.

Tom

Report post

My sons JIO has been tested as unknown cause (7 years ago). But - I continue to look of any possible cause including Celiac. Currently reviewing several possibilities w/metabolic disease MD. Kids w/autism are known to have absorbition issues. His Dx of osteoprosis is a solid DX per all testing. I am always open to any imput from this community as there is so little medically printed to be found. Thank you Tom

Report post

Beachlady,

That is a shame! If the cause of the malabsorption isn't addressed it's difficult if not impossible to correct bone density with supple ments. I've heard that some people with autism do better on a gluten-free diet. Do you believe that? I once suggested to a friend at work whose son had autism, that they try him on a gf diet . He got angry and said that's all bs! I wish you all the best.

Tom

Report post

Hi Tom, Yes- I do believe in gluten free. I know other autistic children on Gluten/cresin free diet which has made a difference in behavior. Weaning my son off wheat foods. He self limits foods having very little to do with meats, fruits, vegies. His labs show no issue dietary wise. He does eat yogart, milk in hot cholate and milk shakes(dry cereal-go figure?). Beachlady

Report post

Hi Beachladyblues...I understand your frustration because IJO is a dx of exclusion, meaning "all" secondary orders must be ruled out (that's a long list) before a dx of IJO can be given. I know how Tom feels. His heart breaks to hear about your son and is looking for anything that could help, which is what he does, he's a very nice/kind guy!

I hope that you are able to call Dr. Catherine Gordon and make some kind of financial arrangement for treatment. If they can't help at Boston's Childrens' Hospital then ask if someone else can that may be closer to you. I realize I've already mentioned this (phoning), but just wanted to touch base again to see if you've had any luck with them or someone else. Most Childrens' Hospitals have financial help available and hopefully you can get a close to free tx plan.

Take Care and keep us posted-okay? We just want to help in any way we can.

Report post

Hi Windblown, I called yesterday ,leaving messages for both Dr. Gordon and her PA. Also called AI Dupont who could only suggest an orthro surgeon whom we had a second opunion from about 14 months ago on a different issue. When my son was 12 he has been seen by 2 metaboilc/genetic MD's with a long list of testing and lengenthy exams-both came up w/JIO (CHOP and The Autism Center). I continue to look for "outlyling" causes and will try anything within reason (and open to all suggestions). Currently his mobility is limited, has hip(from Fx),back and foot pain. CHOP recommended Someta of which I have a healthy fear. My thinking is sometimes the drugs/side effects are worse then the disease. I am looking for any medical info based on any experience from his MDs who are not even answering what seems to me be basic questions. I will continue to attempt contact w/Dr. Gordon. I have great hope in my son meeting her.(We will find a way to get there). Thank you so much Windblown and Tom....Beachlady

Report post

Hi Windblown, After much communication w/Boston, my son has an appt with Dr.Gordon beginning of May! Its such a positive direction in obtaining much needed support. I am in the process of asking hospital for finicial assistance. Also have an appt. at AI DuPont in Wilmington with an IO MD (better then a surgeon). Even though several months away,I am very happy! Thank you for the encouragement! Beachlady

Report post

Beachlady,

I'm glad to hear you have things moving, albeit slowly. I hope the finances turn out well also and that the good dr can help your son. Take care.

Tom

Report post

Oh Beachlady I'm so thrilled for you! Hooray!!!!!!!!!!!! See persistence does pay off. I hope Dr. G can help and that you and your son will be on the road to recovery/treatment or whatever it takes. I know you'll do this, but just be sure to tell her everything you have about your sons medical history.

I think you'll really like her and I pray she'll have positive answers for you. Be sure to ask what the NON bisphosphonate solutions are, since they "occasionally" rx this in those with mulitple fraxs.

Good luck again and I'm so happy for you and your son! A May appt is not bad! I've waited much longer for appts at Univ Hospitals because they are so in demand. The time should fly by.

Take Care and keep us posted if you can.

Report post

Hi
I havent posted for a while but my daughter Katie who is about to turn 12 has IJO since she was 6-she was on IV pamidronate for 3 years and was off treatent for two years.
Over this time she has fractured her leg,ankles 3 times and both wrists
Over the last two weeks she has had pain in her back following a fall-x rays have revealed she has 2 more compression fractures in her spine,she has also developed clicking in her shoulder and wrist joints and pain in her knees.
Her consultant has calle today and she has to go back on treatment for the next few years.

Has anyone elses child with IJO followed a similar pattern- my daughter is so upset by the news as she thought she was getting better

Report post

Caz, could you try contacting ijomom? Here's her home page. http://www.inspire.com/groups/national-osteoporosis-foundation/member/ijomo m/ She may be able to shed some light on this but not entirely sure. Her daughter has IJO, but I believe she is doing very well now and is in college. She was dx'd at a young age too.

Report post

Hi caz70, Reading your post about your daughter makes me wonder. Can I ask why the drug was stopped after 3 years? Did it improve bone density while she recieve it and were there any side effects? (I know -- lots of questions) My son also has IJO which was Dx at the age of 12 when he fell and fractured his hip. After 4 surgeries it now needs replaced. Also his bone density is at an all time low. I just spent an hour today on the phone w/a clinical pharmacist from an bone health team. My sons MD insist he recieve Someta. Per my understanding this drug is 40 times stronger then pamidronate! Its a matter of convenience. With someta, its a one time infusion. Pamidronate requires infusions more often. Truthfully, this IV drug gives me a real bad feeling. My son had taken fosamax 70 mg for 7 years now-he's 19 years old.
As for the IJO, he fracturedhis arm then had compression fractures before being finally being diagnosed. Now after 7 years he experiences pain walking due to very flat feet (L ankle looks like its collapsing inward-has an appt to be seen for this) and back pain. This is besides the ever increasing hip pain. Right now ambulating/standing is very miminal.
I am on a quest to find out all I can about this disease. Its looking like it will not reverse itself where my son is concerned. We are flying to Boston this coming Wednesday to meet w/top specialist there. Upon return, my son will see the top specilist locally. I am armed with my list of questions..some quite difficult.
IJO is very rare. So far when asking MD's if they ever treated an child w/IJO the answer was adverted, one simply but truthfully said no.
It sad your daughter has had so many fractures. Please be Very protective of the large joints! My son is so restricted due to the fx hip. He is seeing the surgeon in 2 weeks to schedule the replacement which afterwards he will spend months non-weight bearing.I turely see his future mostly using a w/c to get around.
It is so good to share with another parent, there has only been few posts and am unable to find another site even this active.
I'd be glad to share any info gained.
My prayers to Katie and you.
Beachladyblues

Report post

Dear Windblown, Just an FYI my son will be seen by Dr. Gordon May 3rd! I am armed with many questions and hope. Thank you for sharing.
Beachladyblues
Update is in the above post.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support NOF

Help the National Osteoporosis Foundation reach its goals and support people like yourself by making a donation today.

Donate to the National Osteoporosis Foundation

Learn more about osteoporosis awareness and prevention

Discussion topics

Links and resources from NOF

Community leaders

Disclaimer

The National Osteoporosis Foundation would like to remind visitors and community members that the views and opinions expressed on this site are not necessarily those of NOF. Please consult your personal healthcare provider regarding any medical information that is shared on this site.