Korbin’s Update

Today Korbin’s endocrinologist called with his test results. 

Unfortunately, he does have Growth Hormone Deficiency (GHD). We have been expecting this would likely be the case based off of his growth charts and his endocrinologist has been very proactive with monitoring it. 

He is also due for his next brain MRI to see if there is any change in the “thickening” of his pituitary stalk. He goes every 6 months for this. We are just waiting for the hospital to get insurance approval and to schedule that. 

So before we get started with the GH replacement we will get the results from his MRI and send those to Texas Children’s for review for the Langerhans Cell Histiocytosis (LCH), which was the reason for our initial visit there.  

Once we know for sure we are good to move forward with the GH replacement it may take some time for insurance approval. It is not uncommon for it to be denied at first. 

We are incredibly grateful for his endocrinologist and Dr. McClain at Texas Children’s for their continued guidance, thoroughly looking into all of Korbin’s symptoms, and their willingness to collaborate with each other to do what’s best for Korbin.

We are thankful to be getting answers and solutions for him to feel the best he can!  He is currently being treated for the following: 

Arginine Vasopressin Deficiency aka Diabetes Insipidus 

Growth Hormone Deficiency (we do not know for sure if this is from the AVP-D/DI which is why we are still monitoring for the LCH). 

Gilbert’s Syndrome- A separate genetic mutation unrelated to the above diagnosis.   

We appreciate all the prayers as always!