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

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.

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.

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!

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

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.

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

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

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

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

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