Rare Epilepsies Network Registry

Read more about the Rare Epilepsies Network (REN) Registry and become a participant.

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Two Year Follow-up and Good News for Christopher

It has been awhile since I have written. I guess since Christopher’s laser ablation surgery he has been doing so well and there has not been much to say. He completed kindergarten this past school year without any learning problems. He has become a avid reader and continues to love being a football player. He has been off all seizure medication for over a year now and his EEG’s remain completely normal. No sign of HH at all.

We returned last week from Houston were we saw both Drs. Wilfong and Curry for what right now was his final appointment. It has been a little over 2 years since his laser ablation procedure. It was a very emotional day for me as we left for the airport to go back home. I guess it was a day of all emotions rolled into one. All I ever hoped once we learned he had HH was a chance at a seizure and HH symptom free life. We knew being this treatment was new it may be a gamble worth taking. We also knew that technology brings new treatments in medicine. As a nurse for over 20 years I see it firsthand and I know it always has to start somewhere.

After we met both Drs. Wilfong and Dr. Curry we knew they wanted to help our son. They were honest and open with every aspect of laser ablation, but we could see, that they both saw promise with this treatment. They both felt they could safely try to ablate this lesion, without any damaging side effects of great detriment. They promised they would do their best, not do anything risky, and most importantly do what they hoped to accomplish. This was to ablate the HH to stop the havoc in his brain.

I can say now 2 years later that goal has been accomplished. I cried flying down to Houston with tears of fear, and uncertainty. Last week I cried tears of joy and of promise. Saying good bye to the doctors and thanking them was very hard. I saw firsthand with my son how dedicated they are helping our HH kids. They have helped so many and continue to do so with a passion. It has been an amazing journey and a life lesson on so many levels. I am sure many of you reading this know exactly what I mean.

It has changed our family, and Christopher’s story has touched many people. He is an amazing boy who has been given so much by so many, but especially by Dr. Wilfong and Dr. Curry..two men giving themselves unselfishly to help HH patients..

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Episode of The Doctors features Two HH Families

This has been an exciting week for the HH community as the television show, The Doctors, featured two families who have children with HH and their experiences with laser ablation surgery. The video clip also includes Dr. Nakaji who performed the laser ablation surgery on both of these individuals and his explanation of the location of the hypothalamic hamartoma as well as how the surgery works to remove the HH.

And if you missed the show, there are clips that are on The Doctors website which are available for viewing. Please click on the link below to see the full program. Or click on the individual links to view individual segments of the program. A brief 30 second commercial is shown before the individual clips.

This video does not work in Internet Explorer, so please use Firefox or Chrome to view the video.

 

Hypothalamic Hamartoma as featured on The Doctors, week of September 9, 2014

Dr. Nakaji http://www.thedoctorstv.com/videos/laser-ablation-surgery-for-brain-tumors History of Patients http://www.thedoctorstv.com/videos/laser-ablation-surgery-for-brain-tumors Patients in Studio http://www.thedoctorstv.com/videos/laser-ablation-surgery-for-brain-tumors

 

Adventures in Houston and Home Again

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We recently came back for our (hopefully) last trip to Texas Children’s Hospital. We met with both Dr. Curry and Dr. Wilfong. They think that the hamartoma (tumor) taught other parts of the brain to seize so now what is left of the hamartoma is not causing any problems, it already did the damage that continues to cause Eli to have seizures. Secondary epileptogenesis. Dr. Curry hasn’t seen this complication yet in the surgeries he has completed and thinks it is really rare. Eli continues to remind the world he is unique! These new seizures could be chronic or could fizzle out over time. No way to know. Just have to wait and see. Ugh.

The ketogenic diet is amazingly hard on the road even though we thought we were prepared. Nothin like asking to use the microwave at McDonalds so that Eli could get his special food warmed up. They put it in a McDonalds carton for him. But he still wouldn’t eat it. “Too Oily.” Yep. Everything is too oily on this diet…

We got to go do two things that were planned for our road trip that we are still so disappointed we couldn’t do. (It’s time [...]

Continue reading Adventures in Houston and Home Again

Medtronic Acquires Visualase

The following post appeared on the Barrow Hypothalamic Hamartoma blog on July 30.

In a statement provided by Bill Hoffman, CEO of Visualase, “The transaction with Medtronic is critical to ensure more patients have access to our beneficial technology. We are proud of the MRI-guided laser ablation technology and other products we have developed and their impact on the well-being of patients.”

The Barrow HH team will continue to work with this company to provide minimally invasive treatment options for our patients as we have done for the last two years. Our team is excited about the possibilities this acquisition can offer.

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

2014 Rare Champions of Hope Nominee

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We are delighted to share that one of our founding members and member of the Board of Directors, Ilene Miller, has been nominated as a 2014 Rare Champion of Hope. For more information, you can read about this great honor here at the Global Genes Project. Ilene was nominated for her work as a Collaborator in Advocacy for Hope for Hypothalamic Hamartomas.

Let’s all extend our hearty congratulations to Ilene.

 

 

Participate in the Rare Epilepsy Network Registry

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The Rare Epilepsy Network Registry, funded by PCORI, will be opening for enrollment in about a month, and we will need as many families as possible to participate in order to make this successful and useful for us all. What is the Rare Epilepsy Network REGISTRY?

The Rare Epilepsy Registry will collect medical information from patients with HH that will be used for patient care and research. HopeforHH.org is fortunate to be involved in the Rare Epilepsy Network (REN). This registry is unique in that it is patient-driven and patient centered. That means that all of us will be able to participate. We can directly improve the care for patients with HH by providing as much information as possible. Please take a moment to read about it and consider participating so that you can help all of those living with HH and other Rare Epilepsies.

Note: Because this is medical research, all participants are required to give informed consent and may stop participating at any time in accordance with Institutional Review Board requirements. All information provided will be de-identified and protected by the REN.

What is the Rare Epilepsy Network?

The Rare Epilepsy Network is a collaboration between the Epilepsy Foundation, Research Triangle Institute (RTI) International, Columbia University, and [...]

Continue reading Participate in the Rare Epilepsy Network Registry

Accepting the Challenge

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Its been over a year since our diagnosis of HH. I felt like everything happened so quickly and before we knew it Eli was having laser ablation surgery. And soon after he was having it again. And now we wait to see what develops.

After talking with the other HH families who so bravely tried this new surgery to ablate the tumor, we were as confident as we could be with our decision to have the surgery. I feel they expressed such success and happiness and that their children were “cured.” I knew HH was a lifetime challenge for most who came before Eli, but with the new ablation surgery it seemed to have such limited complications and astounding success. And the Texas Children’s doctors also expressed awesome results. So I was optimistic Eli would have a similar outcome. He has not.

We had two months of marked positive improvements and then, out of nowhere, a seizure. Then more. Tonic clonics, myoclonics, partial complex, and absence seizures. For the past six months we are always in a state of trying to find a drug combination that works. We always are weening on/off medications when a new kind seizure appears, then [...]

Continue reading Accepting the Challenge

A Compassionate Mother

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The following post was published on the Barrow Hypothalamic Hamartoma blog by Maggie Bobrowitz on May 30, 2014. We want to share with you the difference one of our community has made in all our lives.

Compassion has been defined as the feeling that arises when you are confronted with another’s suffering and feel motivated to relieve that suffering. Many of us feel compelled to help our family and friends when we see them work through challenges in their lives. There are others who extend this act of kindness to those outside of their inner circle.

A couple of years ago I met a woman who continues to serve people she will never meet. She is the mother of a young boy who is recovering from his second HH surgery. Rather than focus on what others can do for her son, she reaches out to families coming to Barrow for treatment and offer her support.

Kathy builds gift bags full of snacks, reading materials, and warm fuzzy slippers for HH patients and their families. I pass them on to the families to maintain their privacy. The bags aren’t just full of comfort food & other goodies. They send a message of [...]

Continue reading A Compassionate Mother

Special Bonds

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Sunday is Mother’s Day. I apologize ahead of time, because this will be a discussion of Mothers – mostly because that is what I know. Someone else will have to step up for Father’s Day and tell their story, just saying. Sunday for the Soebys will be spent in Sedona with our great friends, Maggie and Pete Bobrowitz. Most of you know Maggie as the HH Program Coordinator at Barrow Neurological Institute in Phoenix, AZ. But over the years, I have gotten to know her as so much more. She is a very special friend and also a very good Mom. She has helped me deal with the medical needs of my son, but she has also shared her stories of the trials and tribulations of raising what I affectionately call a “neuro-normal” child. I think at times she would call her daughter anything but “normal” but that is what makes our Mommy bond so great! Because you see, no matter what the situation, Mom’s carry a heavy burden. We all want to make life for our kids – well, spectacular! And at times, that can be impossible. Sometimes we do our very best to simply get through the day…let [...]

Continue reading Special Bonds

Apologies for unauthorized email to subscribers

Just a quick note to let subscribers know that we had an instance of spam being sent to our subscribers. This seems to have occurred and has been corrected at the level of the website hosting service. We use the best and most recommended spam filters in an effort to prevent this sort of nuisance. We apologize for any inconvenience or inappropriate content.

Sincere apologies to all.