 Posted 04/05/2012 20:29:22
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| 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.
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Posted 05/05/2012 20:12:06
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Hi Caz
First if all let me say how much empathy I have for you and Katie. I don't have any knowledge on IJO, but the side effects of zoledronate sound familiar from what I have been reading. You may find more people in your position on the Inspire Forum as I saw your frustration on your previous posts about so few responses to your posts.
I think it is simply that IJO is so rare (thank god) and it is hard to give any ideas or suggestions.
As for fracture pain, well, she must be a very brave young lady to deal with that. I always thought I have a high pain threshold, but it nearly drove me insane dealing with the pain from 6 fractures since November.
Is she on annual injections now? I have heard that maybe 3 or 6 monthly injections might have less side effects. Maybe its worth asking her Consultant about? Other than that, I really just want to say that we do care, just sometimes it is hard to find words.
Regards
Sieglinde
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Posted 05/05/2012 21:15:19
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| Hi Sieglinde Thank you for your reply and yes you can probarbly tell how frustrated I have been trying to get answers about IJO. I feel I fight for everything to do with Katies condition- whether it is her education or a trip to the local GPs-I am constantly having to explain about IJO and how it affects her. Katie is about to restart 6 monthly zoledronate-she had two doses 2 years ago with little side effects so im hoping the next few years will be side effect free-apart from the hypocalcaemia which we expect. I hope you are well
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Posted 05/05/2012 22:37:41
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Caz & Katie - just want to wish Katie 'good luck' and lets hope she again will not have any side effects. It must be a dreadful worry and I do feel for you both.
Caz, do you know the reason for why Katie got IJO? Do the Docs think that she might grow out off it? Do try and see if you can get more info from the Inspire Forum.
Regards
Sieglinde
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Posted 05/05/2012 23:16:14
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| Hi Sieglinde Thank you for your kind words Katie was diagnosed at age 6 with IJO-there is hope she will grow out of it once she hits puberty, but the state her bones are in I very much doubt it-she has fractured her ankles/legs/wrists and nearly all spine is fractured-her x-rays look horrific. As for the american site -Inspire--I do post on it and there is a lot more support because of more cases of IJO but I find the treatment in the states different-ive even tried to get advice from the IJO consultant in Boston but that wasnt forthcoming-Its very hard to keep coping when the support isnt there
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Posted 15/05/2012 08:34:10
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My Grandmother is suffering from osteoporosis, But regular exercising, physical therapy and heat packs and/or ice packs are helping her from recovering from the pain that to without the pain killer..
Music charts
Angelina Jones
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Posted 15/05/2012 09:11:53
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Caz, I only just saw your reply but do fully understand your frustration and I am sorry for you all. It certainly takes its toll on the family as I know only too well.
Just one thought I can add is that after 8 years of ongoing fractures and useless info/ meds, I have recently tried to find out the underlying reason for the poor state of my bones as it is not in my family history. I have been to see a Kinesiologist who told me that I had Candida and a Gluten intollerance, which I got rid of via a special 7 week diet (not nice, but its now sorted).
Also I have an underactive Thyroid and now it transpires that I also have an underactive Parathyroid. All these things were initiated by me asking for the relevant blood tests and using my initiative to get some of these investigations under way. When Doctors just threw another set of drugs at me and tried to scare me into taking them, I felt it was up to me to take charge and see what I could do to help myself. Each one of those conditions I mentioned have an effect on the bones, so if I can get that all in order, maybe my bones will improve again.
I know there is no comparison between your daughter and me (I am nearly 60), but it might give you some ideas of trying to find out why Katie is in such a bad way?
I really feel for you all and hope you will be able to get through this.
Regards
Sieglinde
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Posted 18/07/2012 20:28:47
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I don't to what to say but i got some tips to reduce your pain.
Mind-Body Therapy for Osteoporosis Pain:
Your mind and your body are strongly connected. Research has found that some psychological approaches can help manage chronic pain. One or more of these mind-body therapies may work for you:
1.Guided imagery helps you focus on positive words or phrases, or pleasing images. This directs attention away from the pain.
2. Relaxation training uses concentration and deep breathing. This relaxes muscles and relieves pain and tension.
3. Biofeedback is using a special machine that helps you learn to control functions such as your heart rate and muscle tension. Biofeedback can help you master relaxation skills and ease pain.
4. Psychotherapy can be helpful when chronic pain has led to emotional stress and depression. These feelings can add to the pain you're going through. Coping with them can make it easier to manage pain...
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Posted 15/05/2013 17:57:55
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Hi Dustinscott
I'm glad all this helps you with your pain
But my daughter is 12! And still a child so this isn't
Going to help but thank you
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Posted 15/05/2013 19:23:30
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Hi Caz - just to update - been gluten free now for 1 year and can feel the difference. I am so much stronger and it's getting better all the time. Did you ever have your daughter tested for gluten intollerance? There seems to be a strong connection between gluten and OP. Just a thought.
Regards
Sieglinde
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