Tuesday, June 21, 2011

Learning about CRMO

Hello Again,

Cooper had his first visit with the rhuematologist since we have been diagnosed.  When we left the hospital we were excited and relieved to find a diagnosis with a positive looking outcome.  However, now we are discovering this is going to be a long and painful process with many potential complications along the way.

CRMO is a very rare disease and very little is know about it here in the US.  There have been more extensive research done in Germany and Asia. 

Cooper has currently been taking naproxen for the inflammation and zantac to protect his organs from the harmful effects of naproxen.  This is for treatment of the symptoms themselves.  We are now being placed on Enbrel, which is an injection he will take twice a week to help lower his over active immune system.  Which will make him more susceptible to infections and other diseases.  So we will have to be very careful about who and what he is exposed to.  Which we will monitor through continuous blood test.

When we visited the rheumatologist on Friday Cooper was doing very well with walking and he could even jump a little bit.  However, when we went back on Monday for a check up with orthopedics, he was and is not able to walk very well at all.  He complains of pain and is barely able to stand.  So we are now starting our first round of steroids.  They say he should have better mobility after a few days of the steroids.

we are waiting for our insurance to approve the use of enbrel and we will go back to the doctor to learn how to administer the injections.

On top of all of this, the doctors have discovered a heart murmur in Cooper.  So we will be having an echo done on Friday. 

Cooper is very excited about his upcoming birthday party on July 2nd.  He specifically requested a tractor theme and we are going to have a HUGE water slide, pizza (his favorite) and lots of fun!!  Everyone who has loved and supported Cooper and us is invited!!

Love you ALL!!!
The Cannon Family

No comments:

Post a Comment