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Research on the Horizon May 16, 2014

Posted by mvarlan in Uncategorized.
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Has the lack of available information on hypothalamic hamartomas left you frustrated?

Our HH specialists recognize that patients can have a hard time finding information on the treatment, symptoms, and diagnosis of a hypothalamic hamartoma.  That is why we place such a high value on research studies pertaining to various treatments.

Dr. Oliver Oatman of Barrow Neurological Institute at Phoenix Children’s Hospital is taking the lead in studying the effects of HH on the endocrine system before and after treatment. Under the direction of Drs. Padmaja Bollam and Raymond Bunch, we are also investigating the relationship between HH and various psychiatric disorders.

We’d like to hear from you! What are your biggest concerns about behavior, mood or other psychiatric diagnosis as they relate to HH?  If you have been treated at Barrow and have experienced psychiatric disturbances before or after treatment, your feedback is invaluable. If you were treated at another facility and would like to be included in this cohort of patients, please contact me directly.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

 

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Comments»

1. Tom Smith - May 20, 2014

Thanks, Maggie, for posting this. Our daughter had two surgeries at Barrow/St. Joseph’s three years ago to resect what could be resected of a large hypothalamic hamartoma. Fortunately, since the second surgery, we have seen no symptoms of HH, so far as we know. Unfortunately, she had a stroke during the first OZ surgery, which has left her with hemiplegia.

Perry was 7 months old at the time and is now 3yrs, 7 months. Ever since the surgery, we have noted that she is quite likely to cry in excessive amounts to some stimuli. Some of the more intriguing cases are when she hears sarcasm, when she hears criticism or what could be interpreted as criticism of her or even others, during particular pieces of music and particular moments, etc. In other words the stimuli are understandably upsetting, but not to the degree that she experiences distress. She is also very difficult to soothe once she begins to cry. As might seem logical, we wondered about “crying seizures,” which we’d heard of in another HH patient. However, the fact that these episodes occur in response to negative stimuli and her ability to communicate (or at least acknowledge our efforts to communicate with her) while the episodes occur makes us think otherwise. In quick internet searches, I’ve seen discussion of “emotional lability,” “pathologic crying,” and other conditions that can follow traumatic brain injury and stroke, so of course I wonder about these possibilities.

I would love to hear if there are others who note such symptoms/behaviors in HH children. I’d also love to hear what Drs. Bunch and Bollam might have to say about this.

Thanks for all your postings, Maggie.


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