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Old 01-24-2011, 01:26 PM   #31
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Re: Trying to find someone who has a child with CRMO.

I have CRMO im 14, embrel has worked for me as well as IVIG and IV steroids.

 
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Old 01-24-2011, 03:44 PM   #32
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Re: Trying to find someone who has a child with CRMO.

Quote:
Originally Posted by homeschool View Post
I have CRMO im 14, embrel has worked for me as well as IVIG and IV steroids.
How long have you been diagnosed with it? Did it take a very long time to diagnose?
It took my little sister nearly 5 years to get diagnosed, and now she is being treated at Stanford (about half a year), Humira, Naproxen, Sulfasalazine, Cultrascene, Prednisone... wow that's a big list, but that's what it is for now . She has it in her mandible. Where is yours?
Do your doctors say you'll outgrow it? the disease will burn itself out?

I really hope you recover, it hurts so much to see how much you hurt!!! may God continue to give you the strength I know you need.

 
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Old 01-25-2011, 11:07 AM   #33
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Re: Trying to find someone who has a child with CRMO.

My 6 year old daughter has CRMO, having started getting symptoms right after she turned 4 years of age. She's had bone pain from the top of her head right down to her feet. My daughter see's Dr. Frank Saulsbury at U.V.A Medical Center (we live in Charlottesville, VA) who has her taking 1 1/2 tsp. Naproxen twice daily and then taking 1/2 ml. Methotrexate once a week orally (mixed with the Naproxen). She seems to be doing all right, no episodes of bone pain. This doctor listens to you when you talk about your child, being interested in preventing the child from having another flare-up (having told me that that's the goal of treatment). She has had a limp, currently not being so pronounced, the bone in her pelvic area healing up over time.

Last edited by sldmom3; 01-25-2011 at 11:24 AM.

 
Old 02-25-2011, 02:24 PM   #34
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Re: Trying to find someone who has a child with CRMO.

HI
I am also trying to get me head around this condition. Has anyone found anything to prevent the flare ups. My son was diagnosed a year ago on his second birthday, since then he has had flare ups in his arm, spine, sternum and now it seems to be effecting his eye socket. He is only three. Has anyone been able to identify something that triggers a flare up. Do you think it happens after some sort of trauma (slight) or cold or flu. He is being treated with an anti inlfammaatory drug at the minute but has had so many flare ups this year I am wondering if we should be trying something else. PLease let me know if anyone else has any ideas.

 
Old 02-25-2011, 03:58 PM   #35
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Re: Trying to find someone who has a child with CRMO.

Hi,

I'm sorry your son has this condition too! He's so young. That has to make it even more difficult because he probably can't communicate as much as he needs to because of his age. We've been dealing with it for just over a year, and I still haven't figured it all out. My daughter had flare ups in her right foot, 2 in her sacrum and 2 in her spine (that all lasted about a year). She just had a follow-up MRI, and they said all the lesions are gone so she is in remission. That was great news, but a bit troubling because she's in more pain now than ever. Her Rheumatologist just diagnosed her with secondary Fibromyalgia. What's confusing to me now is that the pain is exactly the same as the CRMO pain. She did her first Pamidronate infusions this week, but I'm not sure if we will know if it worked since she no longer has the lesions. I'm very confused. Some people I've talked to said the flare-ups can be triggered by slight trauma; others have said they will come and go for no apparent reason. My daughter didn't have any trauma to her body prior to getting this disease or the flare-ups. Have they done MRI's to confirm that he has lesions in those areas? Have they talked about putting him on stronger medications, i.e., Methatrexate, Humira or Pamidronate? Our daughter is still on the Methatrexate. I'm not sure if you go off of the drugs if you are not currently in a flare-up or if you stay on them all the time. Our Rheumatologist just said to keep her on them for now. Has anyone else had pain without known lesions? Is it only considered a flare-up if there is a lesion on the bone? I wish there was a support group where we could talk instead of only posting to this site. I would love for my daughter to be able to talk to other kids that are going through the same thing as her, and it would be great to have a conversation with a parent going through this too.

 
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Old 02-27-2011, 12:52 PM   #36
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Re: Trying to find someone who has a child with CRMO.

Thanks for your reply. They have spoken about Methotrexate although this has not started yet. Did your daughter find it hard to take? Because my son is so young for him to have an MRI scan involves him having to undergo an anesthetic so he has not had one since last year. He has had numerous xrays that have showed up the lesions. The MRI showed up a number of hot spots but the breakouts have all been in different areas than the MRI had showed up. His current one seems to be effecting his eye socket. What the doctor is woried about is that it will cause the bone around the eye socket to deform. Have all of your daughters lesions cleared up without any damage to the bones. I am so glad to be speaking to someone else that has experience with this disease, Thanks for listening to me!!!

 
Old 02-27-2011, 03:40 PM   #37
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Re: Trying to find someone who has a child with CRMO.

lappyo1,

I feel sorry for the children who have CRMO - it is hard to watch your child endure the bone pain. Fortunately, my daughter hasn't had a flare-up in months, so I'm hoping that she could be in permanent remission.

Last edited by sldmom3; 02-27-2011 at 03:50 PM.

 
Old 02-27-2011, 03:46 PM   #38
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Re: Trying to find someone who has a child with CRMO.

lappy01,

My daughter, K., is 6 years old, having CRMO. In my last post, I mentioned what meds. she's currently taking. So far, she seems to be doing well on the drugs that she takes. I have no idea what causes a flare-up (unfortunately), just wishing that none of our children had it. I hope that your son does better, getting into remission.

 
Old 02-28-2011, 09:50 AM   #39
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Re: Trying to find someone who has a child with CRMO.

My daughter has been on the Methotrexate for a few months. They kept raising the dose every couple of months because it didn't seem to work for long. She currently takes 10 pills once a week. With this, she also has to take 3 Folic Acid pills daily. You would most likely need to crush these up and put them in food since your son is so young. For us, the Methotrexate didn't make a huge impact. However, my daugther had the Pamidronate infusions (3 days) last week, and since then, she has had absolutely no pain! She's like a completely different person. This past weekend was the first weekend in several months that she didn't just lie on the couch from pain and exhaustion. The MRI's she had recently showed that all of the lesions were gone and the bone completely healed. For your son, were they able to see a lesion on his eye socket through X-Ray? Is it impacting his vision at all? With all of the medications, there are potential serious long-term side effects, i.e., with the Methatrexate, she has to have bloodwork and urine testing every month so they can check the liver. She's tolerated both medications very well though. Our Rheumotologist has never treated anyone with this disease before, so I found that sharing with him what others have posted to this site and being vocal about my preference for treatment really helped. Good luck, and please let us know how he is doing! I'm glad there are now a few parents that are actively posting on this site. When I was sitting with my daughter in the infusion center last week, there were several parents there with their children getting infusions for Arthritis. It was so nice to see the support they were offering one another, and the advice they shared back and forth. Unfortunately, there's so few of us with kids with CRMO that we don't get the benefit of having others to reach out to as much. I'm always happy to share anything we've learned along the way!

 
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Old 02-28-2011, 01:16 PM   #40
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Re: Trying to find someone who has a child with CRMO.

lappy01,

My daughter seems to respond well to the drugs that she's on, not having a problem with them (so far). Concerning her bone lesions, from what I have been told, they've either healed up or are still in the process of healing. K. takes a liquid form of Methotrexate, mixing it with her Naproxen (she takes this liquid med. twice a day) once a week, having her drink the substance. Sometimes, K. complains of stomach pain, so I'll keep her home from school, not completely certain if it's related to the meds. that she's taking.

MamaM,

Yes, it is good to have others that you can talk to about this condition. You're right about that.

 
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Old 02-28-2011, 01:26 PM   #41
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Re: Trying to find someone who has a child with CRMO.

We haven't had his eye xrayed as yet, waiting for a joint appointment with eye specialist and the rheumatologist. hopefully next Monday. He has had xrays which showed up the lesions in his leg and also his sternum. The lesion in his leg is healing well they say. Will have to wait and see about his eye.

 
Old 03-01-2011, 10:28 AM   #42
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Re: Trying to find someone who has a child with CRMO.

That's good there's some collaboration between the specialists. That always helps! Hang in there!

 
Old 04-22-2011, 07:29 AM   #43
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Re: Crmo

I took my daughter to see her PCP just this week and we both left in tears!!! He basically said he wanted her "to work through the pain and fatigue so she wouldn't miss school". I was so mad, and she was too. When he left the room, she said "HE doesnt even understand". My daughter has missed over 30 days this year due to CRMO and the side effects of her meds. She takes Methotrexate (an immunosuppressant) so she catches lots of colds, etc. I WAS ABLE TO GET THE MD to SIGN THE HOMEBOUND form, now she will be able to do her school work at home but still go to school part time if she feels good enough. There will be a teacher to deliver her work once a week and work with her for 2 WHOLE hours, but something is better than nothing!

Hang in there! See if you can get a form from the school nurse. We had tried other things also, such as a modified school day (2nd to 7th hours only), rest time as needed, ongoing hall pass so she could take her time walking between classes and not feel rushed (she really struggles with fatigue) and even keeping text books at home so she wouldn't have to carry a heavy backpack.

THERE ARE THINGS YOU CAN DO!! BE AN ADVOCATE FOR YOUR KID! No one really understands what these kids are dealing with except us parents who see it firsthand (pain, fatigue, mood swings, depression over "not being normal", and sick of being sick)

Much love and warm hugs, Lorie

 
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Old 04-22-2011, 10:33 AM   #44
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Re: Trying to find someone who has a child with CRMO.

Oh my gosh - the first thing you need to do is get a new PCP!! That is horrifying! I'm so sorry someone treated you and your daughter that way. Have you tried anything other than the Methotrexate? That did nothing for my daughter - she was in constant pain, fatigue, moodiness, just an absolute mess! We did three consecutive days of Pamidronate infusions and she is now in remission and doing pretty well. I know everyone is different and not the same things works for everyone, but if you have been on the Methotrexate for a while and it hasn't helped, I would push to try something else. Another thing that has greatly helped is Accupuncture every other week and Cranial Sacral Therapy. I'm not a huge "alternative" person, but we were desparate so we have expaneded our horizons and tried many different things. My daughter goes every other week, even now that she is better. We also went to an integrative medicine doctor and had a full blood work-up done. The trauma from the CRMO caused a lot of deficiencies, i.e., her Cortisol level was "that of someone in battle or suffering from Post-Traumatic Stress Disorder," her Vitamin D was extremely low, her calcium was extremely low - lots of things having to do with bones. Now she is taking vitamin supplements, plus Fish Oil and Radiola (for energy), and she is feeling pretty well. Don't be pushed around by these doctors that don't know what to do because your child has a rare disorder. You are right - you have to advocate for your child and keep looking for things that will help. I also got a 504 Plan in place for her at her school so she would legally be protected for accommodations during bad times. I'm glad you were able to get a teacher to come to the house. Hang in there. I'm sorry your family is going through this. How old is your daughter?

 
Old 06-14-2011, 11:08 PM   #45
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Re: Trying to find someone who has a child with CRMO.

Quote:
Originally Posted by MamaM View Post
Hi,

I'm sorry your son has this condition too! He's so young. That has to make it even more difficult because he probably can't communicate as much as he needs to because of his age. We've been dealing with it for just over a year, and I still haven't figured it all out. My daughter had flare ups in her right foot, 2 in her sacrum and 2 in her spine (that all lasted about a year). She just had a follow-up MRI, and they said all the lesions are gone so she is in remission. That was great news, but a bit troubling because she's in more pain now than ever. Her Rheumatologist just diagnosed her with secondary Fibromyalgia. What's confusing to me now is that the pain is exactly the same as the CRMO pain. She did her first Pamidronate infusions this week, but I'm not sure if we will know if it worked since she no longer has the lesions. I'm very confused. Some people I've talked to said the flare-ups can be triggered by slight trauma; others have said they will come and go for no apparent reason. My daughter didn't have any trauma to her body prior to getting this disease or the flare-ups. Have they done MRI's to confirm that he has lesions in those areas? Have they talked about putting him on stronger medications, i.e., Methatrexate, Humira or Pamidronate? Our daughter is still on the Methatrexate. I'm not sure if you go off of the drugs if you are not currently in a flare-up or if you stay on them all the time. Our Rheumatologist just said to keep her on them for now. Has anyone else had pain without known lesions? Is it only considered a flare-up if there is a lesion on the bone? I wish there was a support group where we could talk instead of only posting to this site. I would love for my daughter to be able to talk to other kids that are going through the same thing as her, and it would be great to have a conversation with a parent going through this too.
How is your daughter doing? It's been almost a year! I hope good!

 
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