ROHHAD syndrome is an extremely rare and life-threatening disorder with symptoms that start to unfold between the ages of 0 and 9. Hallmark signs include rapid-onset obesity, hypothalamic dysfunction, breathing issues and damage to the autonomic nervous system.
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ROHHAD syndrome is an extremely rare, life-threatening disorder that affects a child’s endocrine system, autonomic nervous system and breathing. Children with ROHHAD syndrome gain a significant amount of weight in a short period of time. Additional symptoms include changes in breathing when asleep and sometimes when awake. It can also be associated with changes in behavior and emotional regulation.
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ROHHAD syndrome is a fairly new condition, first described in 1965. To date, there are less than 200 documented cases of ROHHAD syndrome worldwide. Experts continue to research the condition in hopes of discovering a cure. There’s no specific test or treatment for ROHHAD syndrome. Rather, healthcare providers manage the condition by addressing each individual symptom.
Prior to the onset of symptoms, children with ROHHAD syndrome usually have good health with typical growth and development. Your child may develop ROHHAD syndrome up to age 9, but most children start showing signs between ages 2 and 4.
The acronym ROHHAD refers to the hallmark symptoms of the condition:
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Experts don’t know what causes ROHHAD syndrome. But there are three main ongoing theories, including:
In addition to the hallmark symptoms listed at the beginning of this section, children with ROHHAD syndrome may develop complications like:
Currently, there’s no single test that can provide a definitive ROHHAD diagnosis. Rather, healthcare specialists work together to find a diagnosis based on the unique combination of symptoms.
To receive a ROHHAD diagnosis, a child must have:
Due to the rarity of ROHHAD, many children are initially misdiagnosed.
ROHHAD syndrome treatment depends on your child’s symptoms, and every treatment plan is unique. There’s one exception, though. Once children with ROHHAD demonstrate abnormal breathing in sleep, they’ll need to use a CPAP or BiPAP, and eventually use a ventilator to support their breathing.
Children with ROHHAD syndrome may receive care from a range of pediatric experts, including:
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There’s no known way to prevent ROHHAD syndrome — at least not yet.
There’s currently no cure for ROHHAD syndrome. The main goal of treatment is to manage the unique symptoms of each child.
Due to the rarity of ROHHAD syndrome, life expectancy is hard to estimate.
Cardiorespiratory arrest is the most common cause of death.
ROHHAD syndrome is a rare and relatively new condition — and research is still in its infancy. When it comes to the health of your child, every day without answers feels like an eternity. Reach out to your healthcare provider for support. They can recommend treatments to manage your child’s symptoms and resources to help you stay informed.
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As your child grows, you need healthcare providers by your side to guide you through each step. Cleveland Clinic Children’s is there with care you can trust.
Last reviewed on 08/06/2024.
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