Current Battle: Stuck on the Steroid

Before Mason received his official NEHI diagnosis he, like almost all chILD kiddos, was given test after test, medicine after medicine and diagnosis after diagnosis.  When he was believed to have Pneumonia he was put on an oral steroid. Since he constantly had respiratory issues (undiagnosed NEHI) he was off and on steroids often.  Mason has been on some pretty high doses some of this time.  Once we finally received our diagnosis and had an answer to all he has been going through we realized one major problem, steroids DO NOT help NEHI kids. Leaving Denver our number one goal was to get him off oral steroid and get him on Oxygen.

            Mason has been on an oral steroid since October. That’s ten unnecessary months of the nasty stuff. (On a side note. The doctors truly believed the steroids were helping. They were doing their best to treat Mason without knowing what was going on. I am truly not upset or blaming anyone for the use of the oral steroid.) Long term steroid use can and does in Mason’s case have many side effects. This brings me to the battle we are in now, getting him off the nasty stuff.

1.     Long term steroid use can stop or severely decrease your bodies ability to produce it’s own cortisol.  We have weaned Mason down to the lowest possible dose of oral steroid possible. Every two weeks we go to have blood work to test his cortisol level and see if his body has “woken up” and is producing sufficiently on its own. We have been testing for about 10 weeks now and we are not even half way to where we need to be. We go again next week for another test and if the levels aren’t better we are going to an endocrinologist. They can run more specific tests to find out why his adrenal glands are not functioning like they should.

2.     Long term steroid use can cause you to have high blood pressure. While in Denver Mason’s blood pressure was high, very high, like high for an adult high. So he has been on a blood pressure medicine ever since. The hope is that once we get him off the steroid his blood pressure will go back to normal and he will no longer need the blood pressure medicine.

3.     Failure to Thrive.  Mason is doing great, he is a sweet boy who by all means looks healthy and happy. However, his height and weight are below average and when graphed you can definitely see where he has leveled out and in weight even decreased. NEHI itself can cause and contribute to failure to thrive but the steroid definitely isn’t helping anything!

4.     All kinds of other crappy side effects that can be caused by steroids that we are going to have to look into. Decreased bone density and cataracts for starters.

So the battle to get off the steroid and get Mason’s adrenal glands functioning is the big one right now. I’m hoping for good test results next week but if not I’m ready to start the next step of testing and figuring out a plan to move forward. I’m hopeful we’ll get him off the junk soon and I’m praying his little body has not suffered many, if any, lasting side effects.