ROHHAD Syndrome - Has anyone heard of this. There is no cure!

[pixie2010]

I have a very good friend whose 5 year old daughter was diagnosed with this.
Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD syndrome) is a very rare syndrome affecting approximately only 35 cases worldwide. Patients with ROHHAD, originally known as Late-Onset Congenital Central Hypoventilation Syndrome, CCHS, have damaged the mechanism governing the proper breathing. ROHHAD syndrome is a disease that is potentially life threatening and incurable.
•sudden weight gain
•failure to grow taller
•fatigue
•being extra sweaty (but not feeling extra thirsty - can lead to severe dehydration)
•exra large pupils
•absence of automatically breathing deeply enough to exhale carbon dioxide and take in enough oxygen (not feeling short of breath when this happens - can lead to respiratory arrest)

[galamb]

never before, it's the first time I know about it

[lighty]

Not curable, but it does seem to be treatable.  Not a perfect answer, but preferable to the alternative of dying - and it sounds like they are making strides in creating implantable devices to help control breathing that could, eventually, free a sufferer from the ventilator.

Nasty condition - sounds like some form of Cushings, almost.

Best wishes to your friend's child and your friend, too.

[moonflower]

I've never heard of it.  I'm sorry for your friend and her daughter and I hope that she will respond well to treatment.