Wednesday, January 11, 2012

We're still trucking along...

It's been about 6 months since my last post.  I would say not a lot has happened, but that may be because this has become such a part of our everyday lives, that it would feel wrong not to have so many doctors visits, tests, and medications...

Cooper is still diagnosed with CRMO (chronic recurrent multi focal osteomyelitis)  and has been doing really good on the steroids and Enbrel shots.  Then at the beginning of October he developed extreme bloody diarrhea.  I took him to his pediatrician who placed him on antibiotics.  It took a full week of treatment, but it seemed to work.  Then about 3 weeks later, the bloody diarrhea came back.  I knew that something more was wrong, so I contacted his rheumatologist and she recommended us to Texas Children's Gastrointestinal team. 

We met with the GI doctor who felt that Cooper just had a bacteria that needed to be cleaned up.  We took blood and stool samples which all came back good.  So then we scheduled a colonoscopy and EGD.  Meanwhile, Cooper still has bloody diarrhea.  Immediately after the colonoscopy the doctor told us his colon was so inflamed they could not complete the procedure because any slight movement caused bleeding and further damage.  Late November we received the results that not only Cooper's colon was inflamed, but his stomach and duodenum was as well.  This lead to a diagnosis of Crohn's Disease.  Along with the inflammation, they discovered a bacteria in his stomach called H-Pylori.  This is a bacteria most of us have however, it was over reactive in Cooper.  They also discovered some allergen cells inside his throat.  So we will be test for allergies later.

To clear up the bacteria in his stomach they placed on strong antibiotics.  Because he was so inflamed in his colon and stomach they prescribed us for a 4 week treatment of steroids through an IV.  We're not sure which one worked, but Cooper's stomach problems have been cleared up and have not come back since.

Since Crohns Disease and CRMO are both inflammation problems they both can be treated with a biologic drug such as Enbrel.  However, Enbrel is helpful for the CRMO, but not as much with the Crohn's.  So we have been switched to Remicade which Cooper is given through an IV every other week.  We have gone through 2 treatments and will have another one this Friday.  Then he gets a 2 month break between treatments. 

So far, he is doing well.  Just this week he has begun complaining that his legs hurt again, but I'm hoping the treatment on Friday will help.  I give his Children's Tylenol for pain, hoping it is easier on his system then the steroids were.

The good news is that Cooper is walking the best he has been in the last 2 years.  I still worry that we have not reached the right diagnosis yet, but all I can do is follow my gut first then the doctors second. 

Thank you to everyone who has followed us on this long and very stressful journey.  Support of friends and family helps us to make it. 

We are raffling off a night at Rodeo Houston with Cooper's uncle Clint Cannon, to help with medical cost.  Thank you to everyone who enters and Good Luck to you!!

Love Always,
Kirby, Summer, Clyde, and especially Cooper

1 comment:

  1. Summer, you inspire me more than you will ever know for how strong you are!! God is going to take care of sweet Cooper, I just know He will! Jacy and I will be praying for you all. Stay strong, I know how hard it is, but God gave Cooper you as a mother and Kirby as his father, because He knows how amazing you are!