Comments and reviews on article "Chronic recurrent multifocal osteomyelitis (CRMO)"

Worried Mom from Colorado update. Reading these posts give me relief and worry. I am relieved that my daughter is not the only one who has not gone in to the magical remission the doctors speak of when first diagnosed. But this same revelation brings worry about what is her life going to be like moving forward. She is now almost 4 years dealing with this condition. We did try Pamidronate infusions and her lesions (some in size & in amount) increased rather than decreased. Another lesson in not believing every medical report you read. The published results may be inflated with only the positive outcomes which is frustrating as a parent who tries to research options. We are now moving on to Remicade infusions paired with methotrexate. She did not do well on metho before, so I am worried about that. She has missed an incredible amount of school this year but is pulling through. She uses a wheelchair and cushions to get through the tough days at school when she can make it in. She also just started trying a cane (very cool design she picked out) because crutches are hard for her. 

All the hints are so helpful as well as the older kids' advice and support. I am thinking of all of you and your tough journeys. This is a tricky force to be reckoned with. We recently have received support from the Arthritis Foundation. Although CRMO is not JA or JRA, the impacts physically and emotionally can be similar. My daughter will hopefully be going to a camp this summer with her doctors and nurses through this organization. Hoping she will get some emotional support from others who may 'get it'. They also sent her a bear that can be warmed or cooled for pain relief as well as lots of great info for parents and teachers regarding the ups and downs of these conditions. So, please ask your rheumatologists &/or check out this organization for support ideas!

I would like any information on CRMO. Would love to talk to you also.

Please contact me with any info.

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Hi, are you still on enbrel, and is it still working?

Hi Cat
My 13 year old daughter was diagnosed with CRMO this summer after two years of suffering chronic pain. She is trying her third different type of anti-inflammatory medication but with no success yet. It would be good to have a support group
Jo

I'm assuming you have found contacts now. My 9yo has battled CRMO for 4 years now. We live in Bham, under the care of Peter Weiser.

Hi

After almost 3.5 yrs my daughter has been diagnosed with CRMO. I can't find any support groups either.

Please keep in touch if you find one
 

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My 11 year old daughter was diagnosed with CRMO a few months ago, after spending a week in the hospital, with what they thought were tumors on her arm. She has been taking Naproxen twice daily. The pain in her right arm went away with about a week of Naproxen therapy. Last week, she had pain in her other arm for several days, which got better on day 4. I would've brought her in to see the Dr, but there was a huge snowstorm. She has complained a lot over the years of aches and pains in her legs, knees, and arms. Has anyone else experienced this with their kids? My Dr doesn't seem to be able to give us any concrete answers, because the condition is so rare. It has to be related.

My daughter was diagnosed at 11 years also. She also has juvenile idiopathic arthritis. We have tried Naproxen, Enbrel, Methotextrate, Humira and now Orencia. I am going to ask my doc about Pamidronate. Your doc doesn't give concrete answers because the disease is so rare they don't know anything about it. You must do your own research. Grace

My 8 year old son was diagnosed with CRMO this week. He has had pains in many places in his body..elbows, hips, feet, and both knees since last June. This January we were referred to the University of Iowa Hospitals and Clinics via our pediatrician and met with Dr. Polly Ferguson. She was fairly certain his MRI would show evidence of CRMO and it did. He had lesions in all most of the areas mentioned. I would suggest asking your Dr. to contact Dr. Ferguson for a consult or do it yourself. She is at the forefront of research on this disease. She told us if we hadn't made it to her clinic Max may have never been diagnosed correctly.

My ten-year-old daughter was also just diagnosed with it.

hy iwant know how is Dr. Ferguson please

My daughter was diagnosed 1/9/15. They originally thought she had cancer because her clavical stuck out about 2 inches and was 2 inches wide. She woke up X-mass morning 2014. I've done tons of research an links. CRMO is related to IBS as bizarre as that sounds not autoimmune disease. You need to dig into different websites and go into links within the web pages. Look at SAPHO and Majeed syndrome. Your child may not develop any of those issues but it helps explain more of the CRMO. My daughter was diagnosed at 13. Looking back and going to the doctor it was there all along. She was tired, dizzy, and had extream pain in her legs. I was told it was growing pains. At her age now one of the biggest issues is being extremely tired. Being tired masks the fevers. My daughter doesn't get fevers but being so tired she can't function is huge. She does get swelling in clavical, hands and knees that you can see. In a full body scan it in 99% of her bones even in her right jaw. She's on Methotrexate ever Friday and Remicaide infusions once a month and everyday Neoproxen, Nexium, Vitiemen D and a multi Vitiemen. She was on Emberal every Friday until it became worse. I also find warm weather help!! In the house we keep it warm and electric blanket because the ache goes deep into the bone.

Hello, We live in Lowell MA and my son (currently 9 yrs) was also diagnosed with CRMO5 years ago. We did use Methotrexate initially. he used to get flare every 3-5 months. he was treated with Pamidronate 2 years ago when he was not responding for Naproxen / Prednisone. He got 3 infusions of Pamidronate and the pain got controlled. He did much better as well. However, last year when we tool him to eye check-up, Boston children's identified some crystals forming in his eyes and suspected if Pamidronate has anything to with it. Also, he is diagnosed with undeveloped (root is not seen) teeth. Although we are not sure if Pamidronate has anything to do with it, our doctors (Dr. Lauren Henderson and Dr. Sundel) mentioned we better avoid Pamidronate. Please post how is your daughter doing since then..

There is a closed Facebook group for families and patients with CRMO, please join. FYI, there is a new clinic at Seattle Children's Hospital beginning this August just for CRMO. At Seattle Children's they are also conducting a very important study of a biomarker for CRMO. Also, at a CARRA conference recently an international group focused on CRMO had an important discussion about a standard of care for CRMO.