Mason Byrom - ROHHAD Syndrome

Aaaahhhh yes.....our sweet Mason! If you know Haven then you know Mason! He's like the son I haven't had. He's such a part of our family and Haven's best friend. This is a photo of Mason before ROHHAD.

The last few months have been crazy for Mr. Mason. In October his doctors had spoken with our doctors about the treatments Haven has done for her ROHHAD and some of the symptoms that had reversed on her.

Then in November Mason's doctors decided to start him on IVIG and High Dose Dexamethasone to start testing it out with him. He was having to be in the hospital 4 days a month for treatments. This was a lot for Mason and after 2 rounds they decided to let him do it at home.

At Christmas Mason received his very own Cow Tree for Christmas. He is a huge fan of cows and the entire tree was cows!

This is Mason on his IVIG at home. After a few rounds of HD Dex Mason went in to a seizure following his IVIG and was rushed to the hospital. He was found to have lesions on the brain possibly caused by high blood pressure due to HD Dex. The doctors immediately stopped his treatment of this drug and have continued with the IVIG.

After Mason last IVIG he was doing great....until a few days later when he came down with a cold that ultimately put him back in the ICU for a week. He had developed a viral infection in the lungs and then his sodium had dropped to an unhealthy scary level of 118. Normal is 135 - 145. This kept him in the hospital for a few extra days. Mason did finally make it home for St. Patty's day and sent us this gorgeous photo of him.

Mason has one more dose of IVIG and then will undergo a CO2 challenge to see if there are any results from this treatment. This will help the doctors to decide if they must go further or wait a bit.

I don't know what I would do without Mason and his mom Julie! I love the stories of his sister Cameron and his dad is another one on the "most amazing dad" list as he is with Mason for everything. There family is so similar to ours that I sometimes think we're related!

We love all of you and wouldn't be able to do this without you.