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Users comments and reviews on article Chronic recurrent multifocal osteomyelitis (CRMO) by SirGan

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I found this information very interesting to read as my daughter has had crmo for 5 years now and is 12. She has regular visits and treatment at great ormond street hospital but is getting no better and has had all treatments including steriod joint injections. Hopefully things will get better in time and hopefully this will be usefull for other parents
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Following many months and various tests, including a recent bone scan, thay have now discovered two sites of what they believe is CRMO. I am interested to know what has been found to be the best treatment for children and does diet have an impact.

It would also be good to stay in touch with any parent of a child with CRMO to monitor what does and doesn't seem to work.
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My son has CRMO. It took a very long time, and a discouraging amount of wrong directions before the correct diagnosis was found. Because of the rarity, most doctors are completely unfamiliar with CRMO. My son has been taking Enbrel injections for 4 years. This has been the most effective treatment we have found. The medicine is very expensive. This illness has been hard on my son physically and mentally. There is no predictability, and the pain can be severe. My son has several lesions, and his quality of life is greatly affected. I so hate this disease. My boy is miserable a lot of the time and I can't do anything to help him. I am thankful for the Enbrel. Without it, the situation is unbearable.
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I have a 4 year old daughter with CRMO and would love to have contact with another CRMO parent.
Thanks,
Shannon in GA

**edited by moderator**no emails allowed**
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My son was diagnosed with CRMO about three years ago. It took many tests, biopsies, frightening diagnosis’s and about six doctors to get there! We are relocating to Georgia and wondered if anyone could recommend a great doctor who treats this condition. My son is 16 and although he suffers most days with soft tissue inflammation his experience with CRMO has been very episodic. The only thing that quiets his flare- ups are steroids and I don't want him to be without a doctor. Thanks so much and I look forward to following this board. It is difficult to find resources on CRMO. Dr. Polly Ferguson, at the University of Iowa is a great place to start.
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Hi DagnyJane. My daughter has also been diagnosed with CRMO after over a year of wrong diagnosis after wrong diagnosis. Dr. Larry Vogler at the Emory Children's Center is the BEST ped rheumatologist that treats CRMO. He's had lots of experience with CRMO. He's also part of the Children's Healthcare of Atlanta group. Good luck!
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I am 17 and have suffered from CRMO for 7 years however in the last 2 years it has greatly improved. I was reffered to Stanmore and Great Ormond Street and im sorry but nothing they did helped, i had over 12 scans, 4 bone biopsys, saw countless doctors and had countless painfull bloodtests. The disease caused my affected bones to become very brittle so the doctors plastered my foot for 1 year and i also had to wear a splint on my arm ( hard to explain to people I hadn't actually broken my bones).
To be honest the only thing that eased the pain was the anti-inflammatory system myself and my mother created. She would wake me up 2 hours before i had to get up before school and i would have some pain medicine , i would then sleep whilst i let it work so i would be able to go to school. The main places i suffered with were my foot, left forearm, spine and hip.
The pain you get with this disease was enough to cause me to feel sick or faint, however warm compresses or baths helped.
On a brighter note it eased for me as i got older and now the only side effects i have are slight pains in the winter and i cant walk as fast or long as other people because of my foot and hip.
If any parents of sufferers want to contact me on coping methods you're welcome to.
x x
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My 17 year old daughter has suffered for a year in pain and losing weight. She was diagnosed with CRMO and treated with pamidronate which had rapoid and miraculous results. She needed only 3 tretaments and a week of naproxen as a pain killer. She has been fantastically well for 3 months and returned to a normal life, after a long spell in hospital.
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My daughter has CRMO and was diagnosed in March after two years of symptoms and several hospitalizations. She has tried several medications and she has yet to have a pain free day. I find the information on this page and in these discussions very helpful. Her doctor has prescribed a new NSAID along with a week of Prednisone to hopefully jump start her treatment. We are located in the Metro Atlanta area of Georgia and see one of the only two pediatric rheumatologists in the state. HE has been wonderful and very helpful and is in contact with Dr. Polly Ferguson (she studies CRMO). We have recently purchased a hottub/spa for our home because of the amount of time she spent in a tub of hot water trying to find some relief. She does seem to sleep through the night if she has soaked in the hottub prior to going to bed, otherwise her pain wakes her up. She starts back to school next week and I am panicked about how limited her movement is and how difficult this school year is going to be.
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I have an 8 year old daughter with CRMO. We are in GA and I would love to contact Shannon in GA.
She was diagnosed in March after two years of symptoms, multiple doctors, multiple hospitalizations, multiple tests and finally a consultation with a pediatric rheumatologist...he diagnosed her in 15 minutes. We love him!!! He is trying to treat her as invasively as possible. she is in pain daily and is ambulatory, but not without difficulty. Her lesions are in her left hip, right knee and shin, and left foot. She limps badly and moves pretty slowly. She can't go shopping with me without having to ride in a shopping cart - not fun for an 8 year old. Her pain increased tremendously during the spring and had a lot of problems keeping up with her peers at school. By the time they would walk from the classroom to the lunchroom she was exhausted and in excruciating pain. She does not want to use a wheelchair, but I am really concerned about this upcoming school year. She starts school on Monday and we (her doctor and I) have yet to find the correct combination of meds for her. She has been on several different anti-inflammatories without much success. She is on a new one along with a week or two of Prednisone to try and jump start remission. (keep your fingers crossed, I have noticed some improvement over the last day or two). Our next step is Enbrel or Methotrexate...I really don't want to go to the methotrexate.

I enjoy reading the posts and getting ideas and information. Keep it coming.

there was a father, moving to GA, in need of a doctor for his son...We see pediatric rheumatologist, Dr. Sampath Prahalad and Emory Children's Clinic.
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Hi , my 17 year old found all NSAID's gave only temporary relief. The drug which has given her 3 pain free months, weigh gain and uninterupted sleep is PAMIDRONATE. There is a great piece of research on the web showing 7 children were treated with great results. Please do investigate and we wish your child as good a recovery as my daughter has.
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I just wanted to add a positive comment & our personal experience. My daughter was diagnosed with CRMO at age 9, she just turned 15. The first year was the worst & most painful, but as each year passed I started figuring out more & more about how CRMO was affecting her. Her main pediatrician wanted her to continue to go to camp & play sports ~ he gave her no physical limitations. I questioned that at first & was worried all the time, but now I am grateful she wasn't held back.

Her flare ups are caused by any type of injury, anything from twisting an ankle climbing stairs to cutting her finger on a peice of glass. At first I would wait & see how bad the injury was, then she'd end up in a lot of pain & we'd go in to the dr. The x-rays would show an "abnormality" but never any break, rarely any fracture (she's an extremely active kid so injuries were common). On her doctor's advice she'd start taking Aleve twice a day & the flare-up symptoms would go away. The follow-up x-rays would show no abnormality. After a few years I guessed that the abnormality that kept showing up on x-rays was probably the bone inflamation from CRMO and I started giving her Aleve right away after almost every injury. Now, within a few days she is back to normal without a doctor visit. During basketball season in junior high she would play hard during a game, end up in pain & on crutches for a few days but she would be back at it ready to give it all at the next game.

Now she is active in high school ~ cheerleading, pep band, performing arts, youth leadership and speech. On a side note, her worst injury last year was from studying in the library. She plopped down into a bean bag chair, slid back & hit her head on a window ledge & got a mild concussion. Go figure, this active kid can get hurt even in the library! She carries Aleve with her all the time & she knows that she has to take it as soon as she can after any injury. I am hoping she outgrows this soon but it is helpful to know that there is light at the end of the tunnel.

So this is just what worked for us, I am not saying this is the solution to CRMO!!! I think SOMETIMES parents can figure out what works for their child better than doctors & if you can figure out what triggers a flare-up or what treats one the best, with the advice of your doctor, this disease can be manageable. I never would have thought those first few years and I hope that the other parents & kids with CRMO can find their own solutions. Take care!
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Hi

I posted on this a number of months ago - can I ask everyone have any of your children with CRMO gone on to develop bladder problems of any discription?

My grand daughter has just recently started to have some problems which is making the doctors wonder if the CRMO diagnosis is wrong! We are now very worried as they are suggesting that it may be a neurological problem and I just wondered if anyone has come across this.

many thanks
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Hi there this is the first time I have posted on here, my daughter has CRMO at 2 sites and we live in Northern Ireland. She is nearly 5 years old and it has taken over a year for this diagnosis though our consultant is still eliminating other possibilites.

At present all I have been told to give her NSAI's though I don't think that they are doing anything for her. She was in hospital last year with suspected ostemilites and was put on antibiotics via IV and orally. These did seem to have some sort of effect however they were stopped after she took a slight reaction and they got the biopsy results back which did not show any culture and they changed her diagnosis to granuloma.

Our consultant is now referring her to a neurologist to check that there is nothing in that department affecting her though he is still leaning towards CRMO. We saw him on Friday when she had another MRI on her pelvis and spine and he mentioned trying another dose of antibiotics. I am therefore trying to find alternatives as I do not believe that antibiotics will work for her. I have been searching the internet and found reports about Pamidronite being used on children with CRMO and it having amazing results, though I am not sure if this is a treatment easily available on the NHS or how we go about getting it? (our consultant is off this week so I am unable to check with him) Also would like to hear of anyone that has been using this drug and their results.

Thank you in advance.


In response to a previous post re bladder issues and CRMO, my daughter has recently been having problems. She will wipe herself for ages after weeing and then up to even 10 minute later complain that she is still dripping. I raised this concern with my consultant and he didn't exactly give much response other than that it would be the neurologist that could look into that. So not much help I am afraid but when I read that your grand daughter has been having problems I felt I should mention it.
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