 Posted 21/01/2011 20:18:13
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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.
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Posted 03/06/2011 18:32:17
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I feel very sorry for you caz... I'm hoping there must be someone here who can address your concerns. I opened this post hoping to also find answers to some questions. I have a daughter who is constantly suffering from lower back pain, we have not been to the doctor yet and I am reading this post hoping to shed some light to my concerns. I must take her to the doctor soon and if I do get answers I will definitely let you know.
For the time being just follow your doctor's orders and make an independent research on this I'm sure you'll get some answers one way or the other. Good luck!
what doesn't kill you will make you stronger...
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Posted 07/06/2011 20:20:28
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| Thanks-I hope you get on ok at the doctors and that it is not IJO-if you need to ask anyhthing then please ask me-we are pro's at this now-my daughter has now been diagnosed for 5 years and still no-one offers support. x
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Posted 04/08/2011 22:45:51
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| Hello! I too am having a hard time finding others with kids that have ostroporosis. I am not sure if my son has secondary osteoporosis or what just that he has it, along with other issued that affect muscle and bones (genetic) he will begin IV bisophates this month. I have a hard time aquiring information on children. Long term effects on medication, information to give the school, information for physical therapy because they've not treated anyone like him, etc. It is nice to met you Caz :-)
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Posted 05/09/2011 21:07:00
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| Hi Nice to meet you-how is your son and how has he coped with his treatment.I f you need any support or advice then please ask,sorry I havent replied sooner but was getting a bit fed up as nobody seems interested in children with this condition -and I think we should be highlighting it
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Posted 31/03/2012 07:33:06
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| It will be good if you give proper exercise & balanced diet. Osteoporosis diet should be good in calcium & vitamin D.
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Posted 11/04/2012 14:42:31
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| Hi, I have just registered with NOS and find you needing a reply! I have a 9 yr old daughter who has only just been diagnosed with JIO but an investigation will be made to find out why and then it may have a different name! Its taken 11 mths to be identified and now she is wheelchair bound with 6 collapsed vertebre. We are now awaiting the specialist appointments to get treatment underway. Are you in the same position, has your child had treatment and has there been any improvement? Mandy
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Posted 12/04/2012 23:51:32
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| Hi My daughter was diagnosed nearly 6 years ago now.She was on treatment for approx 3 years and has been off treatment for nearly 2 years now. The NOS have been great for us and have answered the questions that any mother would have about such a rare condition. They have provided the support that we struggled to get anywhere else. You will be able to contact the Helpline nurses either through this forum or by calling the number above and asking for them.They will be able to answer questions that you may have. My daughter has had approx 8 fractures since being diagnosed and also has compression fractures of her spine. On diagnosis there is a 'need' to wrap your child up in cotton wool to protect them-I soon realised that this was not the best option-my daughter is now very independant with her condition and decides on the things she can and cannot do. Has your daughter had many tests or started on treatment-Is she being treated locally?-are you from The East Midlands area?-I think you may have sent me a message previously on another site. Please if I can answer any questions that you may have then please ask- I found it very hard initially that my daughter had IJO Caroline
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Posted 13/04/2012 00:17:47
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| To STITCHES--(previous post) Hi did you get a diagnosis yet--is it IJO? Caz
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Posted 13/04/2012 12:14:01
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| Hi Caroline,
That’s very kind of you to answer and offer help. How strange, I think it was you that I had tried to contact on C a F website but since I hadn't had a reply I assumed you guys were out of the woods and didn't want to bring it up again.
How old is your daughter now, just wondered what age she was when she first got it? You say she had 8 fractures, where and how many were collapsed vertebrae?
My daughter has 6 collapsed vertebrae, which prevent her from being able to stand and can hardly walk, I'm sure that's down to the fact it took them nearly a year to diagnose and the physiotherapist had put her treatment on hold until diagnosed. She's ballooned in weight and can't lift her legs. I am so worried and am trying to push the hospital to bring appointments with specialists closer, but the daily wait is almost unbearable some days, when I compare to what she was like a year ago with no problems. I have no choice but to wrap her in cotton wool, just getting out of bed caused 2 collapses and my husband has to be so careful driving in case of bumps on the road. Our paediatric consultant said she is too vulnerable to attend school. By nature Bella is a very independent child but having this has taken away her independence and confidence, she is quite depressed by it all.
We are under Oxford, they are good but so busy. Where did you go and what medicine did your daughter have, how often and was it effective eventually or worked straight away? Was your daughter wheelchair bound when she had the collapsed vertebrae? I am very interested to hear your experiences.
Many thanks Mandy
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