anyone's child have chronic recurrent multifocal osteomyelitis?

[JASMAK]

In September she fell and broke her arm. The pain never stopped and in fact got worse and worse. My daughter was in agony and we had to pull her from school and sports. She couldn't sleep or concentrate. The bone pain was so bad. The doctor ignored it for several visits until hubby insisted on an x ray. She had four tumors in her arm bone. We have had numerous visits to children's hospital since then and she now has a team of orthopaedic surgeons and her main surgeon is a tumour specialist. . ..she has had MRIs, bone scans and IV and blood work. She was diagnosed with a rare genetic auto inflammatory disease called Chronic Recurrent Mulitifocal Osteomyelitis (CRMO). It is 1 in a million for girls and 1 in six million for boys. Her white blood cells attack her bone. Needless to say. .. in the last year our lives have literally turned upside down. We are going back to children's hospital on April 9/10. It is in another city so it is a big to do involving a ferry etc each time. Looking for support or another mom who is going through it

 

[JASMAK]

Ok. .. thanks anyways

 

[Natsku]

Oh no, sorry you're going through this, poor kiddo

As its so rare, I doubt there's anyone else on this forum going through the same thing but we're here for support and/or venting. This board is so quiet though, better to post in a more frequented board like general chatter.

 

[sophxx]

Oh how awful really sorry your all going through this. X

 

[Cattia]

Sorry to hear that, such hard news I guess it's pretty hard to find a support group with something so rare, but maybe there is a way to get in touch over the internet with parents whose children are suffering the same thing or something similar? Is it something that they are able to keep under control with drugs etc in the longer term?

 

[lau86]

I'm sorry you and she are going through this. I hope you can find someone who has experience x x

 

[JASMAK]

I am on a ' support group' on FB but I don't find it very supportive.

She is on a drug. She takes it twice a day. It helps for the most part. .. better than the last two kinds. We are going back to children's hospital next week. Not sure what happens next.