ROHHADNET Syndrome

Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation and Neural Tumor Syndrome

Whew....say that 1 time fast!!! Everytime I go to a new doctor I have to! Then I have to explain it and start at my pregnancy all the way through her first 5 years.

This is what Haven would be diagnosed with IF doctors agreed. There are articles on both and rebuttals on both. It really all depends on the "type" of doctors I think you meet with.

Our doctors believe in the ROHHADNET diagnosis over just ROHHAD. They believe all children with ROHHAD have had or have neural tumors. Some may be just so small you can't detect them - even with an MRI. Or maybe you've read that Neuroblastoma is one of the rare human malignancies known to demonstrate spontaneous regression. In this case you have a tumor, never know it, and by the time something else shows up the tumor is gone. If that's the case, you will never find a tumor.

So when we go in to a doctor I realized last week that I can't just say "Neuroblastoma" as a general diagnosis of her cancer. There are 3 types and it's important to know which type because "Ganglio" is the one known to be associated with ROHHAD. Pulmonary explained to me that this is a very important note and I shouldn't use Neuroblastoma in conjunction with ROHHAD.

So I felt this was an important part to share....as I dive deeper and deeper in to our medical world.