anyone's child have chronic recurrent multifocal osteomyelitis?

[JASMAK]

My daughter was diagnosed with ASD at age 2, and last summer at age 9 she was diagnosed with an anxiety disorder aswell. 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.

 

[Springflower]

Just wanted to say I'm so sorry to read this. I Haven't heard of it before, I hop someone can help.

 

[Peanut78]

Hi Jasmak, I also don't have any experience with this, but wanted to send you big

 

[sequeena]

Oh my goodness your poor daughter. I'm afraid I've no advice I didn't even know this existed. It sounds horrendous.

 

[JASMAK]

Thanks everyone. .. we go back to children's Thursday and Friday so hopefully we see what's next

 

[Blue12]

Thinking of you. How did the first day of appointments to? xxxxx

 

[JASMAK]

Thanks Blue. ... it went well! She saw her orthopaedic surgeon, her practitioner, her infectious disease specialist and an oncologist! !! Phew! I couldn't tell but apparently her xrays look slightly better. Her care team were tickled pink. She is to stay on her current medication and we had back to Children's hospital June 5 th. So I guess that's good news. I had a lot of questions that I forgot to ask because it kind of freaked me out they had an oncologist there and no one mentioned that to us. I freaked out!

 

[Blue12]

That's great news!!!! We had a similar experience at one of Alexia's last appointments. They hadnt told us thy were investigating something new and the results from previous tests weren't what I thought and then I wasn't sure if any of my questions applied anymore and I got all confused and didn't ask everything I want.


Is her pain any better too?

 

[JASMAK]

Well it hurt today but its better than it was before she started this medication. I find the more she uses her arm the more it hurts abd since she's been sick for three weeks she has had lots of rest. She is now better so we shall see! !!

 

[Tiff]

Goodness! I'm so sorry hun. I have no experience with it either, but didn't want to read and run. I'm glad her scans came back slightly better!

Lots of love being sent your way.

 

[LaughOutLoud]

Thinking of you and sorry you are all going through this. x