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Hypothalamic Hamartoma Highlighted by the Epilepsy Foundation March 27, 2015

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Gelastic seizures often go undiagnosed due to the ambiguous nature of their appearance. Many parents are told they have a “happy baby” and encouraged not to “look for trouble.”

Fortunately, parents usually listen to their inner voice telling them that something is not quite right. Although most commonly found in people with hypothalamic hamartoma (HH), gelastic seizures can be present in those without brain tumors.

That being said, without more recognizable seizure activity, HH can continue to go undiagnosed. The Epilepsy Foundation has done the HH community a great service by highlighting HH in their description of gelastic seizures.

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

Three Day Weekend of Support, Education and Empowerment! March 3, 2015

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Please come and join the hypothalamic hamartoma community for a 3-day weekend of support, education, and empowerment!

  • Friday, July 10th – Meet and greet with other families and individuals with HH.
  • Saturday, July 11th – All day symposium with physicians that specialize in HH from all over the country.
  • Sunday, July 12th – We will have family forums in the morning to discuss subjects related to HH and how other families deal with those challenges. Closing ceremonies will be in the afternoon.

Hope for Hypothalamic Hamartoma will be hosting the meet and greet, family forums, and closing ceremonies at the Marriott Medical Center in Houston, Texas.

Saturday’s symposium will be at Texas Children’s Hospital, across the street from the hotel.  We have reserved a limited number of rooms at the Marriott for U.S. $81 per night.

Invited speakers include Barrow HH experts John Kerrigan, MD, John Fulton, PhD, Oliver Oatman, DO, and Maggie Bobrowitz, RN.

The link below is set up to reserve your room on-line.   You may also call (713) 796-0080 or 1-888-236-2427 and mention Hope for Hypothalamic Hamartomas.

Book your group rate: Hope for Hypothalamic Hamartomas

Information on Houston Airports:

www.fly2houston.com

Transportation:

Yellow Cab:  www.houstonyellowcab.com

Super Shuttle:

from IAH- www.supershuttle.com/en/IAHAirportShuttleHouston.html

from HOU- www.supershuttle.com/Locations/HOUAirportShuttleHouston.aspx

Houston Metro: www.ridemetro.org/SchedulesMaps/SystemMaps/pdfs/METRO-TMC-closeup-map.pdf

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

Generalized Convulsive Status Epilepticus February 9, 2015

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Barrow Neurological Institute offers continuing education conferences that seek to expand knowledge about numerous neurological conditions including hypothalamic hamartoma.

Generalized Convulsive Status Epilepticus was presented by Dr. Danilo Vitorovic, Neurophysiology/Epilepsy Fellow at Barrow Neurological Institute.

Keep in mind this lecture is intended for an audience of medical professionals and is designated for CME credit. The content pertains strictly to generalized seizure activity; not specifically to HH.

Please post any questions to this blog.

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

The HH Medical Community Strengthens January 23, 2015

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The Barrow Hypothalamic Hamartoma Center is thrilled to announce another new addition to our team. Dr. Makram Obeid is a pediatric epileptologist at Phoenix Children’s Hospital who specializes in rare neurological disorders such as Hypothalamic Hamartoma.

Not only will Dr. Obeid provide clinical expertise to our patients before and after surgery, but he will also participate in research efforts and support professional education. Click here to read more about Makram Obeid, MD.

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

Ebola Preparedness December 17, 2014

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We have all been following the developments of the Ebola outbreak and we want to let you, our communities, know what Dignity Health is doing to prepare. Although there are currently no confirmed cases of Ebola in Arizona, we continue to hold those affected by this disease in our thoughts and prayers. According to the Centers for Disease Control and Prevention (CDC), the risk of Ebola becoming an epidemic in this country is very low. Nonetheless, we are taking the threat very seriously. To prepare for the unlikely event that an Ebola patient comes to our hospital, we want to let you know about the steps we are taking.

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

Endocrinology Expertise December 3, 2014

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The Barrow Hypothalamic Hamartoma Center is thrilled to announce a new addition to our team. Dr. Oliver Oatman is a pediatric endocrinologist at Phoenix Children’s Hospital who specializes in pituitary and hypothalamic disorders such as hypothalamic hamartoma.

Not only will Dr. Oatman provide clinical expertise to our patients before and after surgery, but he will also participate in research efforts and support professional education. Welcome, Dr. Oatman!

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

“Epilepsy: Crisis and Opportunities” November 18, 2014

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Barrow Neurological Institute offers continuing education conferences that seek to expand knowledge about numerous neurological conditions, including hypothalamic hamartoma.

“Epilepsy: Crisis and Opportunities” was presented by Dr. Han Sun, Recipient of the CNS Christopher Getch Research Fellowship, Cerebrovascular Fellow, Barrow Neurological Institute.

Keep in mind this is intended for an audience of medical professionals and is designated for CME credit.

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

The Rare Epilepsy Network (REN) has launched and we need YOU to participate today! November 7, 2014

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The only way we will get answers to these critical questions is to gather information about as many HH patients as possible in one place so researchers can study trends and investigate hypotheses. To that end, Hope for Hypothalamic Hamartomas joined the Epilepsy Foundation and 9 other rare epilepsy organizations to launch the Rare Epilepsy Network (REN).

 Complete the REN survey TODAY!  

Sign up here


The REN is open to ALL US & INTERNATIONAL patients! 

For more information, please contact  Ilene Miller @ Ilenepennmilller@gmail.com or Lisa Soeby @ lisasoeby@cox.net

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

What Does Stereotactic Mean? October 23, 2014

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A patient earlier this week mentioned that her surgeon recommended stereotactic surgery. I couldn’t be certain which treatment he was actually referring to. I thought this would be a good time to clarify some medical terminology.

The specialists at Barrow Neurological Institute offer stereotactic procedures for HH including biopsy, radiotherapy (Gamma Knife), and laser thermoablation. Because physicians often use acronyms, abbreviations, and medical jargon, patients are often confused about what treatment is actually being recommended.

Stereotactic surgery or stereotaxy is a minimally invasive form of surgical intervention that makes use of a 3-dimensional coordinate system to locate small targets inside the body and to perform on them some action such as ablation, biopsy, lesion, injection, stimulation, implantation, radiosurgery, etc. Basically, stereotactic refers to an approach to treatment rather than the type of treatment.  It requires special equipment and physicians with expertise in this area.

Often referred to as stereotactic radiosurgery, Gamma Knife (GK) treatment can be used to treat benign tumors (such as HH), malignant tumors, vascular abnormalities, and functional disorders such as trigeminal neuralgia. It manages these conditions noninvasively, allowing patients to go home the same day as treatment without the pain and risk of complications associated with traditional surgery.

Laser generated stereotactic thermoablation (LTA) allows surgeons to place a laser probe into the HH lesion to administer heat to that tissue. This is performed using intraoperative MRI imaging, which allows the medical team to visualize the administration of heat in real time. Although we often take a piece of tissue for biopsy during the LTA procedure, we don’t perform stereotactic surgery for the sole purpose of obtaining a biopsy.

In summary, if your surgeon refers to radiosurgery or radiotherapy he is describing radiation. If he talks about thermoablation he is referring to burning the lesion.

I hope this is helpful. We don’t mean to talk in code. Please any questions regarding this topic here.

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

 

Pediatric Grand Rounds – Barrow @ Phoenix Children’s Hospital October 17, 2014

Posted by mvarlan in Uncategorized.
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Barrow Neurological Institute offers continuing education conferences that seek to expand knowledge about numerous neurological conditions including hypothalamic hamartoma and epilepsy.

“The Basics of the Electroencephalogram” will be presented Dr. Korwyn Williams, neurology specialist on the HH team. Keep in mind this is intended for an audience of medical professionals and is designated for CME credit. All Barrow and community medical professionals are welcome.

Attend in person or get CME credits wherever it is convenient for you by using “Go To Meeting.”  If you would like to sign in using “Go To Meeting” please contact Sande Hogan at (602) 933-0462.

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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