Barrow Hypothalamic Hamartoma Blog

HH Touches Individuals Around The World! May 24, 2013

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My respect and appreciation for Hope for Hypothalamic Hamartomas continues to grow as I see their efforts in reaching those affected by this condition across continents. For the past 2 weeks I have been in contact with families from Australia, Spain, Russia, Italy, and Tunisia. I have been fortunate to be able to provide them with education regarding symptoms, treatment options, and lifelong challenges. Each of these families gained the confidence to continue the struggle to find answers by connecting with Hope for Hypothalamic Hamartomas . Kudos to HHH!

Post comments or questions to this blog or contact me directly at Margaret.bobrowitz@dignityhealth.org.

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

Another Success Story with Laser Generated Stereotactic Thermoablation May 8, 2013

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Adult patients suffering with HH tend to be hesitant to undergo complicated surgeries. As time passes, we find an increasing patient interest in stereotactic laser thermoablation. It is less invasive than open brain surgery and usually requires only one overnight stay in the hospital. We are happy to announce that one of our patients treated with this technology by Peter Nakaji, MD, is recovering successfully in California. We continue to offer this treatment option to pediatric and adult patients as we see the benefits magnify.

Post comments or questions to this blog or contact me directly at Margaret.bobrowitz@dignityhealth.org.

Regards,

Transitioning from the Hospital to Home? April 29, 2013

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Health care professionals often are concerned about discharging elderly patients from the hospital without being certain they will receive the proper assistance once they get home. Caregivers and family members can be just as concerned.

If you or someone you know has experienced this apprehension, or if you have a loved one scheduled for a hospital admission in the near future, please visit the ACTIVATE Community Resource Room at St. Joseph’s Hospital for assistance. The hospital concierge desk (located inside the main entrance of the hospital) can direct you to the ACTIVATE room. They can also be reached by phone at (602) 406-2374.

The ACTIVATE Community Resource Room can offer assistance with the following:

Behavioral and Mental Health Resources
Caregiver Services
Community Resources
Food, Clothing, and Medical
Equipment
Government Subsidized Care
Housing Options
In-Home Care Options
Palliative Care, Hospice Care

Please post any questions or comments you have to this blog.

Regards,

Hypothalamic Hamartoma Getting a Voice at the Mayo Clinic in Rochester April 19, 2013

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The Barrow HH Team effort to raise awareness about HH is moving to the upper Midwest next week. John Kerrigan, MD, Director of the Barrow Hypothalamic Hamartoma Center, will speak at Neuroscience Grand Rounds at the Mayo Clinic in Rochester, Minnesota, on Monday, April 22, 2013.

Neuroscience Grand Rounds is a monthly educational event for neurologists and neurosurgeons in which esteemed professors from other institutions are invited to speak on topics they are experts in. Dr. Kerrigan’s talk is titled Hypothalamic Hamartoma and Epilepsy: Basic Cellular Mechanisms. If this presentation is recorded for future access I will post that information here.

Regards,

Developments in Research & Treatment Options April 12, 2013

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The 2nd International Symposium on Hypothalamic Hamartomas will be held in September of 2013. During these meetings discussions pertaining to treatment options and research on the horizon will take place with specialists throughout the world coming together to improve the quality of life of patients affected by this condition.

John Kerrigan, MD, will be among these experts and will share the direction research and clinical planning will take going forward in a recorded conference. Details about Dr. Kerrigan’s conference are coming soon.

Regards,

Fighting Bigger Battles by Lisa Soeby, Founder of Hope for Hypothalamic Hamartomas April 8, 2013

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I sat down to blog several times over the past week – and several topics came to mind. However, it was difficult to focus on a topic because I was locked in a battle with my son’s school over Extended School Year (ESY) services. For those of you that are not familiar with this term, it is a service that is available over the summer to students with an IEP that demonstrate a loss of knowledge or critical skill over extended school breaks. This program is designed with individuals like my son in mind. CJ has had 4 HH surgeries and each has negatively affected his short term memory, retention ability, and slowed his critical thinking skills. He has received these services for the past 3 summers. However, after CJ started high school this year, I found that all of the “unwritten” special education rules have changed. Notice I used quotation marks around “unwritten” because the laws have not changed but the rules of the game seem to have changed. It has always been a challenge getting services because CJ’s difficulties are not obvious physical ones, and it is easy to say, “He just needs to try harder to remember,” or, “He just isn’t listening,” or, “He isn’t motivated,” or, even better, “It is like he just forgets!” All of which are untrue, but hard to disprove to a closed mind. In high school, it is like he is just supposed to grow up and move on.

Today, we were notified that, after much discussion and legal proof on my part, that the school was negligent in their handling of the situation; CJ will get ESY services this summer. However, it all comes at a cost. Our trust in the school is severely shaken, and CJ feels some members of his IEP Team – adults he had been told were his advocates – basically told him he was not worth teaching over the summer, because he would probably just forget everything.

So why did I decide to blog about this? For one, I knew that so many of you would completely understand what I am saying, and two, I try to find a lesson in everything. What I took away from this situation is that those of us who fight bigger battles get bigger scars. Did I ask for this confrontation? Absolutely not! But did I have the opportunity to show my son that he means the world to me and that I would go to the ends of the earth to support him? Absolutely!

For so many of us that are blessed with an individual with HH in our lives, whether it is a child, a grandchild, a spouse, or someone we feel responsible for in some way, we will have plenty of battles to fight on their behalf. I just want to encourage you to fight the good fight! It is hard to do day after day, and the battles seem endless sometimes. But you are making a difference. CJ now knows that there are people in the world that will support him and there are those who will seek to put him down.

He needs to be able to advocate for himself to the best of his ability, but he knows, without a doubt, that his parents love him and will do whatever it takes to support him. Don’t we all deserve a champion?

___________________________________________________________________

Very well said by one of the most compassionate mothers I have ever met.

Regards,

Hope for Hypothalamic Hamartomas(HH) April 1, 2013

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Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Their goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking story of how they attained a correct diagnosis. If you or someone you know has been diagnosed with this condition, please contact this organization for information and support. Strength can be found in numbers.

Regards,

Laser Generated Stereotactic Thermoablation with Real-time MR Thermography March 15, 2013

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Laser Generated Stereotactic Thermoablation with Real-Time MR Thermography is becoming a buzz phrase within the HH community. As medical professionals are often cautiously optimistic about new technologies, but everything we are seeing points to successful patient outcomes with less risk than traditional surgical removal of HH tissue. The neurosurgeons at Barrow, specifically Drs. Andrew Shetter and Peter Nakaji, have treated several patients presenting with a variety of neurological disorders and seen significant changes on MRI scans.

The Barrow HH team is excited about this system and continues to treat HH patients with success. Our first HH patient was treated at the end of last year and continues to be seizure free since surgery.
Post a comment or question to this blog or contact me directly at Margaret.bobrowitz@dignityhealth.org.

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

Multidisciplinary Approach February 28, 2013

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The diagnosis of Hypothalamic Hamartoma brings clarity to individuals as to why they or their loved ones are exhibiting a variety of seemingly unrelated symptoms. This is why treatment for this condition requires a multidisciplinary approach for diagnosis, treatment and on-going management of lingering symptoms. Click on the link below to view the multidisciplinary team at the Barrow HH Center. Feel free to post any questions to the blog.

Adult Team

Pediatric Team

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