Well this would depend on who or what side of the globe you are talking about. I have been doing hours and hours of research this weekend. I've had 2 lap tops in front of me almost all weekend! I have a lot of stuff to share and I have made comparison spreadsheets, charts and I have my very own dictionary of medical terms often used with discussing ROHHAD.
What is ROHHAD? Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood
What is ROHHADNET? Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation and Neural Tumor Presenting in Childhood
It seems as though, from my readings, that Europe is proposing to add "NET" on the end for those cases who have Neural Tumors. If this were made official - this is the syndrome Haven would be officially documented as having. USA is rejecting the addition of "NET" as they believe the acronym is already long enough and the neural tumor is almost always assumed.
I will share a comparison of Haven vs. 15 ROHHAD patients from Chicago. It shows what symptoms they have vs what Haven has. It also compares the age of these 15 when symptoms occurred and as we know I have been trying to figure out what has been going on with Haven since age 2 years and 4 months.
PS: It's about to get techy!
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
My son, Joshua was one of those 15 patients seen in Chicago by Dr. Debra Weese-Mayer. He was diagnosed with ROHHAD (well, originally called Late Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction) in September 2005. He was turning 9 years old then.
ReplyDeleteHi, My daughter was diagnosed about 8 months ago with Rohhadnet syndrome. She is 11 years old now and the onset was at about 4 years old. We are treating her for all her symptoms and taking her to numerous doctors. She is on growth hormone, anxiety medicine,desmopressin (for bed wetting), etc. She had a gangion neuroma at 5 years old in her belly that was removed and non cancerous. It was noticed only from appendicits at the time. Her growth hormone shut off completly at that time, and the weight kept coming on along with so many other ailments, I can not even list. If anyone can help us and steer us in the right direction I would so appreciate it. I emailed the doctor from France with no response. Her temps are so out of control and she has been hospitalized for hypo or hyper thermia whatever many times. Her temp this week was 92.5 until we brought it up with hot baths liquids, etc. Doctors do not even believe us until they see for themselves! Then they scratch there heads and say we really do not understand that's impossible! I live in N.Y and Slone Kettering were the one's that diagnosed her, but it is really not there field. Any info is greatly appreciated. Thanks so much for listening, Carla My email is cartianic@aol.com
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