National Osteoporosis Society - Osteoporosis Forum / Special Forums / Osteoporosis in children

Osteoporosis and pain

caz — Fri, 04 May 2012 20:29:22 GMT

My daughter has IJO and has been told this week that she has fractured another two vertebrae L3 and T4 -she was previously on pamidronate for two years and then zoledronate for one year.-She started treatment at 7 years of age

She is now nearly 12 and had been off treatment for two years now but her consultant has decide to restart her treatment and she will be on treatment for the next few years.-As you can imagine she is devestated at this.

However she has developed pain in her heels ,both knees and left groin, she also has a clicking pain in her neck and sometimes the pain is so bad its hard for to get out of bed.She has tried to use her crutches at school but this makes the pain in her neck worse.Ive spoken to her consultant who is not too concerned but as a parent this worries me as she was virtually pain free before and is now on regular paracetemol and ibuprofen and needs to wear a knee support at present.

Has anybody had any experience like this or offer any advice.

How to look for prescription drugs for osteoporosis?

alyssabenjamin — Tue, 02 Apr 2013 06:10:00 GMT

How to look for prescription drugs for osteoporosis?

Is Osteoporosis happen children ?

suzan07 — Thu, 17 Jan 2013 12:01:01 GMT

In this site I saw Osteoporosis in children.I can't believe this,still now I'm thinking Osteoporosis occurs only in women not in children.
Anybody please tell me what is the reason for this(Osteoporosis in children).
If you have any idea about this please let me know.
Thank You.

children with IDIOPATHIC JUVENILLE OSTEOPOROSIS

caz — Tue, 16 Nov 2010 13:24:13 GMT

My daughter is 10 years old with IJO and on IV Zoledronate-in the past 3 weeks she has been totally reliant on her crutches and has collapsed once--We have seen a physio today who has said she has severe muscle loss on her legs but doesnt know why as she has had no trauma to her legs--Has anyone experienced anything similar, is it related to her osteoporosis--any advice would be a comfort at this worrying time.

Muscle weakness/muscle loss with zoledronate

caz — Sun, 04 Nov 2012 21:13:14 GMT

Has anyone experienced muscle loss or severe muscle weakness with having zoledronate infusions

my daughter has just been diagnosed

Graces_mum — Fri, 26 Oct 2012 09:45:41 GMT

Hi everyone,

My daugher is 3 years old (nearly 4) & has just been diagnosed with Juvenille idiopathic osteoporosis. She started getting symptoms 4 months ago, it started with a limp & got worse from there to the point where she is unable to walk, stand, crawl etc. At first they diagnosed her with a bone infection & she was put on anti biotics for 6 weeks, but she was quickly getting worse not better. They orthopedic consultant didnt think there was anything else wrong with her & it did get to a point where they thought it was just in her head. After I made it clear we were not going to accept that we got referred onto a pediatrician who was happy to do more tests. To cut a long story short (I could rant on all day!) after all the tests avaliable it turns out she has multiple compression fractures all over her body, worst in her spine. which explains why she has been in pain for months & why she is unable to walk etc. After the tests ruled out everything else she has been diagnosed with this condition. She has thin weak bones over her body (worst in her spine) She will be starting treatment next week which will be 3 days of iv infusion of the drug pamidronate. we are hoping this will help her pain & start to strengthen her bones.

I am just feeling relieved that we have a name of a condition & can start treatment. I know 4 months isnt that long a period compared to the length of time others have waited for a diagnosis but its heart breaking to see your child in pain. My daughter has always been an active little girl, she loves to go to dance classes & exercise classes. She is missing her dancing most of all. If she hears music at the moment she tries to move but cant because it hurts. I am hoping by messaging on this website I can get a bit of advice & support from others who have gone through similar things. I am a very proud mummy, my daughter is very brave & strong. Through everything she has been through lately she does not moan. She is the perfect patient! no crying in the hospital & she is the best at being a statue for the doctors & nurses. I really hope the treatment helps as I understand the condition is rare & the doctors keep answering our questions with 'I dont know' as they just dont know what is going to happen.

Thanks for reading.

Idiopathic Juvenille Osteoporosis

caz — Fri, 21 Jan 2011 20:18:13 GMT

Does anybody else have a child with Idiopathic Juvenille Osteoporosis.
Surely there must be somebody out there that has a child in the same situation.
I have posted 3 times on the forum now- and lots of people have read my discussions but not one person has replied--surely there must be some support available from others in the same situation.

Physiotherapy for children with juvenille idiopathic osteoporosis

caz — Wed, 02 Dec 2009 21:08:10 GMT

I have a 9 year old daughter who was diagnosed with IJO 3 years ago. I have spoken to several parents who all mention the same thing that there is a lack of physiotherapists who know how to deal with children with IJO as they are unsure whatbtreatment to give them. Can anyone help

pamidronate verses zoledronate in children

caz — Tue, 14 Sep 2010 22:04:32 GMT

My daughter aged now 10 has juvenile idiopathic osteoporosis and was treated with pamidronate for 3 years then in january this year changed to zoledronate.

Since changing to zoledronate she has experienced more pain in the lumbar area of her spine and has also put on weight -(only around her abdomen)-she hardly put on any weight in the 3 years she was on pamidronate.Her abdomen an also be quite distended at times.

Has anyone else experience this or is it just coincidence.