Hello! On researching CRMO I came across your post about your daughter and it left me shocked and hopeful! My boyfriend has had crmo since he was 8 years old... Up until 3 years ago he was diagnosed with crmo. Today he is actually about to turn 20 next week and suffers everyday to pain in his lower back and legs. The doctor gave him meloxicam which he has to take every day which now does not have any impact on him. The pain is still there and his liver is getting damaged. I was wondering if you could tell me more information on how you started this process for your daughter. I wish nothing but to find a cure for my boyfriend, although I know there isnt one. He was told to go on a gluten free diet he stopped taking his pill and takes omega 3 everyday now. Hope you see this its been a year since you wrote this but you have really giving me hope! Hope your daughter is doing great!!
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Hello. My 12 year old daughter has been diagnosed with CRMO in addition to Crohns, 4 years ago. Drs. want to start her on pamidronate. Wondering if you are still on pamidronate, or if you had any success? There doesn't seem to be much data on this treatment for CRMO. Hope you are doing better.
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Further to my email above, it is worth noting we have been successful with keeping my daughters Crohns in remission for over 3 years with her diet. It was only after we changed her diet and took her off all meds, (6MP and steroids) that she began to feel better, The drs. do no believe diet had anything to do with the remission of Crohns, nor can they explain why repeated labs continue to show normal CRP levels and sed rates, no GI symptoms and clear colonoscopies. Unfortunately, the CRMO has flared again (only in one knee). I'm attributing this to gradually adding gluten, sugar and other processed foods back into her diet. I'd rather give the restricted diet another try instead of rushing into pamidronate, but the drs are pushing to move forward given the present severity of the CRMO and its proximity to the growth plate. Has anyone had success or have comments with pamidronate?
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Hello. My son is going through the process of diagnosis and the medical people thinks he have CRMO. We are so frightened. How is your daughter today
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My six year old daughter recently has been diagnosed with CRMO and on her 4th lesion in her leg. We are new to the CRMO world and would appreciate any insights that you may have especially on the newer medicines such as Enbrel.
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I have had celiac since I was little and I was diagnosed with CRMO last year at the age of 13. Although they think my celiac may have cause the CRMO when I went through puberty. Your case maybe different but I definitely hope it works out!
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I was tested for celiac disease because I have CRMO in my hip. I am 14 and have had it for about 3 1/2 years now. I found out yesterday that I didn't have celiac but I am still finding my CRMO in my hip very frustrating especially as I struggle to take part in physical education and sports. I have taken alendronic acid and sodium risendronate which both helped me reduce pain but I know it could always come back and both times it did. I am hoping that it will go soon and that everyone with CRMO will find anti inflammatory tablets so that they can get on with their lives. thankyou for the advice from previous comments.
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I just saw this. We have been on the same type of routine for our daughter. We added a bone nutrient and daily nutrient pak that helped her body meet it's needs (happy to share the ingredients and why they are working) !! We also use essential oils for pain instead of depending on NASID's. Please be careful with a cleanse's on a child, not something parents need to do without gaining knowledge on what they are doing. We choose to use a change of foods to more nutrient dense which want removing sugar, gluten, and dairy. Starting with the autoimmune protocol diet is amazing for helping child gain health and reset their system as well as heal the gut !
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could you share more info on the bone and daily nutrients and essential oils you use? I buy young living oils and am curious which ones to use
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Hi! My 3 year old has CRMO. Did you go to an allergist or was this all research you did yourself?
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I have to completely agree. I have shown symptoms of CRMO for 2 years now and find it very hard to believe that diet has any affect on it. It is a hereditary disease in the first place, so how would eating healthy change your genetic code.
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My son also has CMRO since he was 9, now he's almost 13. Today we'have started a different diet, no diary, no gluten grain, no sugar food , no solanaceae ..... I hope it'll work
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