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Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation

What is Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation?

Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation is a rare disorder that affects the governance of proper breathing.

 

Rapid-Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation is a rare disorder that affects the governance of proper breathing.
Acknowledgement of Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation has not been added yet.
30.0http://pediatrics.aappublications.org/cgi/content/full/120/1/e179
Synonyms for Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation has not been added yet.
No known causes at this time.
The following is a list of symptoms of ROHHAD:
Name Description
Hyperphagia Abnormally increased appetite for and consumption of food.
Diabetes Insipidus A condition in which the kidneys are unable to conserve water.
Respiratory Manifestations Respiratory Manifestations
Primary Alveolar Hypoventilation A rare disorder of unknown cause in which a person does not take enough breaths per minute.
Cardiorespiratory Arrest The cessation of normal circulation of the blood due to failure of the heart to contract effectively.
Reduced Carbon Dioxide Ventilatory Response Reduced Carbon Dioxide Ventilatory Response
Obstructive Sleep Apnea A condition in which pauses in breathing occur during sleep because the airway has become narrowed, blocked, or floppy.
Autonomic Dysregulation Autonomic dysregulation involves malfunctioning of the autonomic nervous system.
Ophthalmologic Manifestations Ophthalmologic Manifestations
Thermal Dysregulation The body's inability to regulate its temperature
Gastrointestinal Dysmotility Food does not move normally through the stomach and intestines, there often is distention of the stomach and intestines as fluid collects, and there frequently is pain.
Altered Perception of Pain Inability feel pain as intensely as normally should
Altered Sweating Can cause excessive sweating when in a relaxed period
Cold Hands and Feet Cold Hands and Feet
Tumor of Neural Crest Origin Originating in the tissues that form the sympathetic nervous system. The normal function of these nerves is to regulate the automatic and non-voluntary body functions such as heart rate, blood pressure, breathing, and digestion.
Hypothalamic Dysfunction A problem with the region of the brain called the hypothalamus, which helps control the pituitary gland and regulate many body functions.
Failed Growth Hormone Stimulation Failed Growth Hormone Stimulation
Polydipsia A medical symptom in which the patient displays excessive thirst.
Hypernatremia An electrolyte disturbance that is defined by an elevated sodium level in the blood.
Hyperprolactinemia A condition of elevated serum prolactin.
Abnormal Brain MRI Scans Abnormal Brain MRI Scans
Seizure Seizure
Enuresis Bed wetting
Hypotonia A state of low muscle tone.
Strabismus Strabismus
Diagnosis of Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation has not been added yet.
Diagnostic tests of Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation has not been added yet
There are no treatments or cures for ROHHAD.
Prognosis of Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation has not been added yet.
Name Description
Tips 1.) Don't let them just tell you your child is overweight - use your gut instinct 2.) Patience is needed with a ROHHAD child - as behavior can change overnight 3.) No matter what - this is not your fault - you are only trying to help your child 4.) LOW SODIUM FOOD - must have low sodium food - no prepackaged food
References of Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation has not been added yet.
Newly diagnosed Created by Pittsburgh
Last updated 5 Aug 2011, 02:55 PM

Posted by Pittsburgh
5 Aug 2011, 02:55 PM

JandM, JI just wanted to update you on the situation with Marky. They found a mass on his adreanal gland yesterday and have stabilized him. He is on his way to CHI to be seen by the team out there that are more versed on ROHHAD. If you or any one you know can help in the expences for Marky's trip please send them to this site. "your link text":http://www.giveforward.com/miraclesformarkymortonjr?utm_source=facebook&utm_medium=fb_wall&utm_campaign=user_vanity_page With 7 children to take care of his mom and dad need all the support they can get. Once again thank you for your help and support, I do believe that it help make a difference in his treatment. ~Brian

Posted by Pittsburgh
28 Jul 2011, 03:50 AM

Thank you so very much! My nephew received a blood transfusion last night in order to help his O2 saturation improve, it is working thus far and he has stabilized. CHP Dr.'s are working very hard on a treatment plan. I will share this info with my family (his parents) and help move them towards getting the support and knowlege they need. I will be sure to contact you soon and "pick your brain" for some help. Again Thank you so much for reaching out to help! It's a scary time and it's nice to see that others care enough to help. God bless

Posted by jandm1102
26 Jul 2011, 04:42 AM

Hi Brian, i am a mom whos daughter has ROHHAD diagnosed in jan of 2010 after yaers of fighting with NY drs, Drs in Virginia and childrens hosp phildelphia for a diagnosis. its not an easy diagnosis to come by and not an easy one to deal with. after diagnosis i found a support group on facebook- just search Rohhad and youll find it. i meet a mom when i went to chicago for studies and diagnosis in jan 2010 with my daughter. the support group is great becouse of other families with similar problems and different ways we have approached the problem. childrens hospital chicago (CAMP) Dr. weismeier is doing a clinical study which we are part of. hope this is helpfull any questions i may be able to help with im happy to. jandm1102@gmail.com send me a message and ill answer what i can or send you info on others in the same situation or my number if it will help. YOUR NOT ALONE it just seems that way becouse their are so few of us.. sorry to add you to our list but will help where i can

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Introduction Created by biotechguy
Last updated 8 Feb 2011, 03:58 PM

Posted by biotechguy
8 Feb 2011, 03:58 PM

Hi Everyone, I just wanted to reach out to your community and say hello. My name is David Isserman and I'm one of the co-founders of RareShare. If you have any questions or comments about your community or the site, please feel free to reach out to me directly at david@rareshare.org.

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haveyroo

I am a Wife and Mother of a 7 year old girl who has been diagnosed with Ganglioneuroblastoma Cancer and ROHHAD Syndrome.

 

 

My daughter began showing symptoms that something was wrong around age 2 and by age 4 we were given a diagnosis. I have studied this disease for the past three years and have found many families from around the globe that share her disease. I have worked with NORD and GARD to get information on their sites and ensure the Rare Disease Day has it updated and listed in their database.

 

 

My daughter was the first to undergo an experimental treatment for ROHHAD and so far has shown great signs of improvement.

 

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Newly diagnosed

Created by Pittsburgh | Last updated 5 Aug 2011, 02:55 PM

Introduction

Created by biotechguy | Last updated 8 Feb 2011, 03:58 PM


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