Hypothalamic Dysfunction - Part of Rohhad Syndrome

My daughter has Hypothalamic Dysfunction.  Originally diagnosed in 2007 with Neuroblastoma Cancer, Hypothalamic Dysfunction and Paraneoplastic Syndrome.  Now she is finally diagnosed with ROHHAD (Rapid-onset Obesity, Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation) with no treatment or cure. 

We began noticing little changes when she was 1 years old.   She didn't feel pain like other kids and she didn't cry and she was never sick.  Then at age 2 1/2 she gained about 25 pounds in a month and we spent the next 1 1/2 years in and out of the hospital looking for a diagnosis. 

In 2007, we moved to Maryland and she had a 45 minute seizure pushing us in to Johns Hopkins.  There was when we were finally heard by doctors and her diagnosis came in. 

She still (5 years old now) has never been sick with a cold, can not feel pain, has one hot foot/one cold foot, sleeps no more than 4 hours total in a 24 hour day, can't control her pottying, and continues to gain weight. 

I noticed no one had written out here and HD does exist but not only as a disease by itself but also as a syndrome.

http://haveyroo.blogspot.com

haveyroo haveyroo
31-35
3 Responses Feb 27, 2009

Hey Haveyroo, sorry to hear about your daughter. Hopefully I can offer some helpful info!<br />
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I am an ambassador for Cincinnati Children's Hospital in Cincinnati, Ohio. I conduct research on hot children's healthcare topics so Cincy can know what information to publish to help provide useful information on topics like the one you've posted here.<br />
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I'm not sure how much help it could be, but Cincy is helping a girl with a similar problem named Alexis Shapiro. You can find her story here: http://www.dailymail...rage-young.html<br />
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I hope that story can help your family in some way. If you'd like more information on Alexis (in case you feel it is relatable) you can find it here: http://cincinnatichi...ween-brain-gut/<br />
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Best of luck to you and your family Haveyroo!

I am soooo sorry for what you have been through, must be very scarey. <br />
I am 48 and am just now coming to find that there is a very strong chance that I have Hypothalmic Dysfunction. <br />
I fall under the possible cause topic, as having had traumatic head injury. <br />
To tell the truth, I don't think many have a clue they have it, is why no one has posted on it. If you wish to talk, just send me a message.

I am soooo sorry for what you have been through, must be very scarey. <br />
I am 48 and am just now coming to find that there is a very strong chance that I have Hypothalmic Dysfunction. <br />
I fall under the possible cause topic, as having had traumatic head injury. <br />
To tell the truth, I don't think many have a clue they have it, is why no one has posted on it. If you wish to talk, just send me a message.