Making Progress and Call to Action for Laser Ablation Petition

by Sue Jackson on November 15, 2014

Faith has been on Zonisamide for a year, we have slowly increased it to the dosage she is on now. 100 mg twice a day. With room for still some more increase.

In seven years this is the best Faith has ever been with her seizures and moods. As i’m writing this she has only had one small gelastic/partial seizure. This is amazing for Faith as her seizure control has never been the best.

We initially started Zonisamide because her seizure pattern changed to an extent that was quite unbearable for her and us. They had become quite long lasting up to 3-5 minutes and stronger in nature.  she had also become quite postictal after her seizures sleeping anywhere up to 20-30 minutes after the longer ones.

We were finding that she would have a good spell with each increase initially of about three weeks and then the bigger seizures would start to creep back in.  Though with this last increase the good  spell seems to be lasting longer which is amazing.  I think of it as our wonder drug and just hope that this increase is the one that will finally put an end to her uncontrolled epilepsy.

Faith had surgery about three years ago, where her surgeon removed ¾ of her large Hamartoma. We had tried every anti-epileptic drug available to us at the time, nothing had worked for her.  We always said unless things became unbearable we would never put her through any more surgery.  And then I have started to hear more and more about the Laser Ablation that is readily available in the US.  From what I have read most children/adults who have had the laser Ablation seem to be seizure and symptom free. As her seizures have developed and we have become reliant on the medication we find ourselves thinking of medical intervention again.  Though to do this we need to have the laser ablation available over here.  As a group HHugs uk is trying to put a petition together of 10,000 signatures.

During my last appointment with our Neurologist she mentioned that a new group is being set up who have a interest in epilepsy and that they have been talking about treating children with HH in one centre.  All these actions are exciting and hopeful but in the meantime we are continuing to try and obtain as many signatures as we can.  So if you are reading this and haven’t already, please sign the petition and share it encouraging your friends and family to sign.

 

 

Eli and the Ketogenic Diet

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by Angela Donn on November 12, 2014

Despite Eli’s diagnosis, two brain surgeries four months apart 1500 miles from home, and daily seizures, the ketogenic diet has caused us the most stress!

The diet started off with a three day hospital stay at Johns Hopkins Keto Clinic. Here we had classes to help us learn about the diet and how to prepare food. It is hard at first because it goes against conventional thinking. The Ketogenic diet essentially is 92% of calories from fat. So Eli’s first food after fasting for 24 hours was about four bites of chicken, a third of a stick of butter, two pieces of broccoli, and heavy whipping cream. They served it to us and we were like, what are we supposed to do with this butter? So he got mouthfuls of butter with a little chicken. We then knew we were in for something…

So it is really hard to get a handle on the diet which is a 4:1 ratio of four fats for every one protein/carb. We have spent hours upon hours trying to convert a few recipes to get the right ratio within our calorie allotment. We have to measure every […]

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Rare Epilepsy Registry (REN) is Launched

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Hope for Hypothalamic Hamartomas is pleased to announce the exciting news that you’ve been hearing about for the past year. Hope for Hypothalamic Hamartomas, The Epilepsy Foundation and nine other rare epilepsy organizations were awarded a one million dollar grant to launch a rare epilepsy registry!! After months of hard work by the Registry team who have developed a comprehensive questionnaire, the time has come to invite participation by individuals and families with hypothalamic hamartomas.

We would like to challenge every HH patient and caregiver to complete the REN survey so we can better understand what causes HH and how to cure it! Click on the logo link below to enroll and participate in this research.

To encourage even more participation, we challenge each person who completes the questionnaire to challenge three more individuals and post your challenge on the Hope for Hypothalamic Hamartomas Facebook Page.

Click the REN logo below to go to the questionnaire and get started.

 

And here’s Wendi’s challenge.

Two Year Follow-up and Good News for Christopher

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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 […]

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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 […]

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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 […]

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Accepting the Challenge

2014-06 Eli

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 […]

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