Update on how the Cyclosporine is working

Hi everyone, just wanted to touch base and let everyone know how things were going. Caleb was started on the Cyclosporine last Thursday. How this medicine works......what t-cells Caleb had were only a few of a couple types instead of a lot of a lot of types. Unfortunately, from many biopsies and blood tests we have found out what t-cells Caleb did have were attacking his gut and skin. Therefore, this immunosupressent that was started was hoped to relieve his skin, helping with the breakdown and itching issues, and to help his gut (hopefully stop the diarrhea). Well so far so good. Caleb's skin looks UNBELIEVABLY BETTER AND he has only had 1-2 bowel movements in the last three days as compared to 8 to 9 A DAY before the cyclosporine. Along with that some of his lymph nodes that have been swollen have gone done greatly in size. We are hoping this isn't just a coincidence. There are some side effects to Cyclosporine: high blood pressure (Caleb is already showing signs of this so he is on Atenalol to help that), kidney issues if the therapeutic levels of cyclosporine go to high, higher risk of infection as all of his immune system is now completely wiped out - however he only had a few t-cells functioning, hair growth-he will begin to grow hair so get ready for future pics.

He has developed an eye infection so we are treating that with eye drops. We hope he clears that infection with no problems.

In addition, through a friend in Wheeling we have met another family that has a child with CHARGE syndrome, as she refers to it another CHARGEr. She and her son have been so informative for Brian, Caleb, and I it has been wonderful. In addition, we have met other families with cute little CHARGErs and we are blessed to have met them. Thankfully, none of them so far have any of the immune issues that Caleb has. Please keep all of those families in your prayers too. I am hoping to update my sight soon and will hopefully have links to the other cute CHARGErs, of course with their parents' permission, blogs so you can read all about these tough kiddos. Well I will update soon...and hopefully with a little help from my friend Amy I will be able to post some video to this website soon too!!!! WOOHOOO