Hi!
I am new here as well. My 8 year old daughter was just diagnosed with CRMO in California. I would really like to find a support group of other parents of children with CRMO. Is there something like this? There is one sapho/crmo support group on yahoo but it is very quiet.
I would be happy to open one up on yahoo or just exchange email addresses. Is anyone interested? I am just looking to be able to exchange information on treatment, tips on pain management, how are kids are managing etc.
If you are interested please contact me.
Thanks!!
Cat
I am new here as well. My 8 year old daughter was just diagnosed with CRMO in California. I would really like to find a support group of other parents of children with CRMO. Is there something like this? There is one sapho/crmo support group on yahoo but it is very quiet.
I would be happy to open one up on yahoo or just exchange email addresses. Is anyone interested? I am just looking to be able to exchange information on treatment, tips on pain management, how are kids are managing etc.
If you are interested please contact me.
Thanks!!
Cat
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Hi. Im 15 years old (soon 16) and i got CRMO. i actually dont know how long ive had it but for quite long. I read this article and it is everything what my own doctor told me and a bit more :-) (i didnt new enything about, why it had a osteomyelites in the name) and i have to say that it is great! if eny one of the parents got a question about CRMO or one of your kids do i will be happy to answer as good as i can :-)
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Hi my 6 year old daughter has had this snce she was 4 she has had lots of mri scans bone scan etc and i would like to chat to other parents my daughter has it in her foot and is now limping and has sarted to complian that her knee hurts to im trying to find out as much as i can about this as our local hospital have gave up on her and we now hae to go to stanmore in middlesex but they still wont give her any treatment and i hate seeing her pain
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hey, i'm a 17 yr old female wth a severe long term case of CRMO. i have had it since i was 2 and unlike most cases, i have not had any periods of remission. my case is so severe in fact that i have undergone chemotherapy to try and prevent other associated diseases and to 'calm' the violent case of CRMO which i have. i know i have an incredibly rare case, but am interested to know whether some else out there suffers to the same degree as i do.
be asured, the high majority of people with CRMO lead wonderful and fatastic lives. it can be treated and doesnt cause such an inconvience in the future. i hope everyone gets better btw :-D
be asured, the high majority of people with CRMO lead wonderful and fatastic lives. it can be treated and doesnt cause such an inconvience in the future. i hope everyone gets better btw :-D
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Ajackson,
I am also a 17 year old with the same condition and have had it since i was about 2 i would love to talk with you... just because your ovbiosly someone i would be able to realate to :-)
xx
I am also a 17 year old with the same condition and have had it since i was about 2 i would love to talk with you... just because your ovbiosly someone i would be able to realate to :-)
xx
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Yeah definatly :-).
how is your crmo now? Do you still get alot of flare ups and stuff??
xx
how is your crmo now? Do you still get alot of flare ups and stuff??
xx
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I am interested to see that a number or teenagers with CRMO have joined here and would greatly appreciate it if any of you could let me know about the treatment you have received and what you have found useful. My 5 year old daughter has CRMO and suffers greatly from the pain it causes, it is very difficult as a mother to see this and feel rather useless at not knowing enough or what I can do to help. Emily has a site in her right knee which does not seem to cause much bother but the one at her pelvis does and affects her walking badly.
Look forward to hearing from any of you, and thank you in advance.
Look forward to hearing from any of you, and thank you in advance.
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NICOLAG1,
Hello im 17 years old and i have had my crmo since i was 3, i do not mean to worry you because i know mine is a very rare case and normally with the right treatment it should clear up.
Im under great ormond street hospital in london... and i am actually going into hospital tomorrow for a week.
I have tried alot of treatments varying from herbal to chemotheraphy but mine as the name states keeps reacuring. Its such a hard disease to grasp a hold of, and different things work for different people im always being told steroids did people wonders but for me it has never worked.
It is a horrible and painful disease to deal with and as i have got older i have accepted that i have it and find it easier to deal with the pain, i also take morphine to ease the pain and have these injections that i do my self to also help with the pain
I understand it must be awful for you as you said you must feel helpless, as does my mum, what treatment has your daughter had for it?? I would say im an expert at having this disease :-) unfortunatly!!! so ask me anything and ill be happy to try and help.
i wish her all the best and hope she gets better soon
xx
Hello im 17 years old and i have had my crmo since i was 3, i do not mean to worry you because i know mine is a very rare case and normally with the right treatment it should clear up.
Im under great ormond street hospital in london... and i am actually going into hospital tomorrow for a week.
I have tried alot of treatments varying from herbal to chemotheraphy but mine as the name states keeps reacuring. Its such a hard disease to grasp a hold of, and different things work for different people im always being told steroids did people wonders but for me it has never worked.
It is a horrible and painful disease to deal with and as i have got older i have accepted that i have it and find it easier to deal with the pain, i also take morphine to ease the pain and have these injections that i do my self to also help with the pain
I understand it must be awful for you as you said you must feel helpless, as does my mum, what treatment has your daughter had for it?? I would say im an expert at having this disease :-) unfortunatly!!! so ask me anything and ill be happy to try and help.
i wish her all the best and hope she gets better soon
xx
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Hi , My 12 yr old son has been in and out of hosp since may 09 ,he's had 3 biopsies as they thought he had sarcoma, after weeks of antibiotics by iv and orally hes still no better. docs now think he has CRMO. Can someone please tell me abit more about this condition and the treatment involved. He has it in his mandible(Jaw)so quite a strange place to get it i thought. i notice that chemotherapy was mentioned by nicolag, is that one of the treatments they offer? if so was you really ill with it? i think you are all so brave and wish you well for the future.
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Hey :-)) the one talking about chemo therapy was me... i was just replying to something nicolag1 had said..
Well it wasnt something they normally offer people but my case was really really bad and very servere and nothing else works and yeah i was really really ill with the chemo i hated every minute of it and think anyone who goes through it apart from me are the most amazing bravest people on the planet.im really really sorry to hear about your poor son.. i hope he gets better and im very sure he will.. you should register on this site and i will be happy to answer anything you would like to know as i have had it for a very long timee...
Dont give up and best wishes xxxxx
Well it wasnt something they normally offer people but my case was really really bad and very servere and nothing else works and yeah i was really really ill with the chemo i hated every minute of it and think anyone who goes through it apart from me are the most amazing bravest people on the planet.im really really sorry to hear about your poor son.. i hope he gets better and im very sure he will.. you should register on this site and i will be happy to answer anything you would like to know as i have had it for a very long timee...
Dont give up and best wishes xxxxx
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There is some good news regarding CRMO!!!!
I've been dealing with the condition for 16 years now (I'm 27 now) in my clavicle, ribs and skull and I know what the sufferers and parents are going through. When it flares up, it is a pain like no other and very little can help! I was misdiagnosed 16 years back with TB of the Bone and then 6 years back they found out that it was the wrong diagnosis and that I was dealing with CRMO. I have spoken to so many radiologists and specialists who have never even heard of CRMO, makes me wonder how many more children and adults are being misdiagnosed.
My specialist and I have been researching and trying out a few things and I might just have some answers that could ease the pain and even perhaps prevent the episodes flaring up.
Nothing works but anti-inflammatory drugs which isn't always the best route for little ones in my opinion. I fell pregnant with a little one 2 years back and I started on a multi-vitamin called 'StaminoGro'and after 3 weeks of taking it everyday my symptoms stopped flaring up. (I'm taking 2 a day) I kept on the vitamin my entire pregnancy with Folic Acid and in 9 months I was symptom free which has never happened. My specialist thinks that if your immune system is high then it could possibly help.I went off the 'StaminoGro' and it came back... all the pain and swelling. After a month I went back on it and it helped. Now I'm not sure if this is something young ones can take but I would highly suggest speaking to your Doctor and finding out because this truelly has changed my life and I have tried everything. If you want to know about some more research I've done please, I would be glad to help or perhaps even provide some parents with comfort that everything is going to be ok... it does get better!
I've been dealing with the condition for 16 years now (I'm 27 now) in my clavicle, ribs and skull and I know what the sufferers and parents are going through. When it flares up, it is a pain like no other and very little can help! I was misdiagnosed 16 years back with TB of the Bone and then 6 years back they found out that it was the wrong diagnosis and that I was dealing with CRMO. I have spoken to so many radiologists and specialists who have never even heard of CRMO, makes me wonder how many more children and adults are being misdiagnosed.
My specialist and I have been researching and trying out a few things and I might just have some answers that could ease the pain and even perhaps prevent the episodes flaring up.
Nothing works but anti-inflammatory drugs which isn't always the best route for little ones in my opinion. I fell pregnant with a little one 2 years back and I started on a multi-vitamin called 'StaminoGro'and after 3 weeks of taking it everyday my symptoms stopped flaring up. (I'm taking 2 a day) I kept on the vitamin my entire pregnancy with Folic Acid and in 9 months I was symptom free which has never happened. My specialist thinks that if your immune system is high then it could possibly help.I went off the 'StaminoGro' and it came back... all the pain and swelling. After a month I went back on it and it helped. Now I'm not sure if this is something young ones can take but I would highly suggest speaking to your Doctor and finding out because this truelly has changed my life and I have tried everything. If you want to know about some more research I've done please, I would be glad to help or perhaps even provide some parents with comfort that everything is going to be ok... it does get better!
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Hi. I am a 19 year old boy. I have had CRMO since I was 6. Throughout my life I have tried many many different medications, some of them which worked for brief periods of time, and some which had no effect whatsoever. The disorder was supposed to go away already, but it hasn't. I have an acute form of CRMO, and have had no periods of remission until I started my latest medication. The pain levels varied from mild discomfort, which was rare, to constant pain, to enough pain that I needed crutches because I could not put weight on my foot, to could not get out of bed or move because of the pain, to blacking out from it. I have run the gamut of tests and biopsies and medicines. I am now on Enbrel, 50 mg a week. I have been for a year and a half. It has literally turned my life around. If anybody would like to contact me, just to talk, or for some advice, please post a reply and I will message you back.
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My daughter 17 has been diagnosed with CRMO after a year of tests and treatment. She has now had 3 infusions of PAMIDRONATE and been pain free and well for 7 months. This drug is a miracle and has given her her life back. See internet articles from a guy in Cananda who has used successfully in a number of cases.
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Hi. Made myself an account... I'm the 19 year old from the post 2 above.
to the person above me: I used pamidranate as well. It worked very well, but lost its effectiveness after a time. in addition, the doctors were hesitant to use it for too long because it can lead to bone spurs. does your daughter go to sick kids in toronto? one of the best doctors to deal with crmo works there. (he was my doc). again, if anybody has questions or wants somebody to talk to them (or their kids) who has been through it all and knows what its like, you can email me at _[removed]_. please put crmo in the header. especially to you parents reading this, even if your child doesnt say it, one can often feel alone and isolated when in a situation like this. it doesnt matter how good a support base you provide, you do not know what it is like. only someone who has actually experienced this for themselves can truly understand. I felt so alone as a child. I didn't know of anyone with a similar experience. feel free to contact me. i more than willing to be a "big brother" and help out someone with crmo.
to the person above me: I used pamidranate as well. It worked very well, but lost its effectiveness after a time. in addition, the doctors were hesitant to use it for too long because it can lead to bone spurs. does your daughter go to sick kids in toronto? one of the best doctors to deal with crmo works there. (he was my doc). again, if anybody has questions or wants somebody to talk to them (or their kids) who has been through it all and knows what its like, you can email me at _[removed]_. please put crmo in the header. especially to you parents reading this, even if your child doesnt say it, one can often feel alone and isolated when in a situation like this. it doesnt matter how good a support base you provide, you do not know what it is like. only someone who has actually experienced this for themselves can truly understand. I felt so alone as a child. I didn't know of anyone with a similar experience. feel free to contact me. i more than willing to be a "big brother" and help out someone with crmo.
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well im thirteen. and i have had crom for five years now and just yesterday i found a bumb on my hand. and i miss school a lot! and with this i get acne stuff all over my body! and it hurts!. so if anyone has questions just e-mail me at
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