Family Conference Fun Fact Friday #4

We are excited to bring you more news about the Hope for Hypothalamic Hamartomas Family Conference which will be held July 10-12 at

Texas Children’s Hospital – Pavilion for Women
6651 Main St
Houston, TX 77030

Things to do while in Houston!  Here are just a few things to do near the Medical Center-

Houston Zoo

Hermann Park

Houston Museum of Natural Science

Museum of Fine Arts Houston

Children’s Museum of Houston

This site has the top 10 things to do around the Houston area-

Top 10 things to do in Houston

It will be hot and humid but there are plenty of indoor options.  This is going to be an amazing weekend filled with fun, learning and friendship.  Now is the time to sign up and reserve your hotel!

Registration

Family Conference Fun Fact Friday

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Let’s talk travel! The conference and hotel are in Houston at the Medical Center. This is located south and a little west of downtown Houston. This area contains over 18 hospitals in a very small area. There is almost a hospital on every block! For someone that has driven in both Phoenix and Seattle I felt the area was a little confusing and very busy. I have heard some from the east coast felt the area was normal traffic and not too difficult. All depends on your comfort level. The Marriott at Houston Medical Center offers a complimentary shuttle within a two mile radius. Texas Children’s Hospital and the Marriott have parking available for a fee.

If you are flying in, there are two choices depending on which airline you have booked with; Bush International Airport (IAH), 23 miles north, or Hobby (HOU), 14 miles east. You can take a taxi, super shuttle, or rent a car to get to the Medical Center area. Once you are there, you can walk to the conference from the hotel, one block away. If you prefer, inside bridges are available that will take a little longer, but keep you out of the heat.

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Family Conference Fun Fact Friday

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Where to stay? We have a small block of rooms reserved at the Houston Marriott Medical Center for 81 USD a night. Friday and Sundays’ events will be at this hotel. The symposium is located just a block away at the Women’s Pavilion at Texas Children’s Hospital.

Please reserve your room soon. We may have the option to increase this block if needed depending on hotel availability, but the longer we wait the less likely they will be able to accommodate us. Some of the rooms have a pass through door so you may connect two rooms for larger families. These are also limited and you will need to contact the hotel itself at 713-796-0080 to check for availability.

The Marriott has two restaurants on site. They are also offering a discount coupon per person for the breakfast buffet at 15 USD for adults and10 USD for children.

For families that do not handle the heat well, there is a way to stay indoors, traveling through the sky bridges. It is a little longer walk, but I am sure it will be cooler. There is also an indoor pool to help cool you off and burn some of your children’s […]

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Please Participate in the Rare Epilepsy Network (REN) Registry

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by Ilene Miller

Some of you may wonder why I keep pushing for the Rare Epilepsy Network Registry (REN) so I wanted to share a more complete reply.

My son Mark who just turned 13 also has HH. He was diagnosed a age 5. I live in Bethesda, MD and am an attorney by training. My husband is a surgeon. We helped found Hope for HH with Lisa Soeby and others because until then there was no place to go for trustworthy medically accurate information about HH diagnosis. The foundation works with a board of Medial Advisors from around the world that specialize in HH.

One of the biggest issues we face in seeking treatment is that HH patients and doctors are dispersed around the world. It’s rare for a doctor, unless they are at a specialized center, to see and treat even one HH patient and even more rare for that doctor to see multiple HH patients. Thus, there is a great deal of variability in the treatment of HH patients. In addition, any lessons learned treating an individual patient is not as likely to be shared with other doctors. Questions such as: which surgeries are most successful? who […]

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Rare Disease Day February 28

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by Katherine Busby

Today is Rare Disease Day. It’s the day to recognize all those thousands of diseases that largely go unnoticed, diseases that receive little funding to researchers from drug companies and from the government because the patient population isn’t big enough to make it cost-effective. Collectively though, thousands suffer from these diseases and with the help of determined patients and parents, the internet, social networking, and some of the bigger support/advocacy groups that encompass many different rare diseases, changes are increasingly being made. Hypothalamic hamartoma is what Ezri has and is one of these (ultra) rare, and many times catastrophic, disorders. It is amazing to see the increase in treatment options and improvement in prognosis that have occurred over the last 15 years due to the acceleration of information exchange. Hopefully the research in my future will help contribute to many more great changes for patients of rare disorders!

Introduction and Update from Carrie

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Hi my name is Carrie and I am a young adult living in the UK and was diagnosed with HH in 2013. I am writing this blog to show how easy it is for patients with HH to be misdiagnosed and undergo unnecessary procedures. Thankfully I have turned my life around but it wasn’t easy after such major surgery.

It’s been two years since I underwent a temporal lobectomy. After being diagnosed with temporal lobe epilepsy I felt this was my only chance to be cured of daily seizures. How wrong was I? After the surgery my seizures increased from 10 gelastics seizures daily to every 15 minutes. I couldn’t quite understand if this was normal but my gut instinct was telling me it wasn’t. My neurologist was confused and really didn’t understand why my seizures increased as opposed to decreasing. I was sent for an MRI only to be given the news I was not expecting! My diagnosis was incorrect. I didn’t have the temporal lobe epilepsy with which I have been diagnosed for 31 years. In fact I have HH.

How do you possibly get your head around going through major brain surgery to find out it was […]

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Colby’s Journey and Challenges: Update January 2015

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I have heard so many great success stories lately and feel so hopeful for the future of HH. I also realized I have not seen many stories about the challenges that people are facing even after treatment. As a patient or parent, I think it is very important to hear the whole story before you make the difficult decisions about you or your child’s care. I encourage other families to write about their journey, what treatments have been tried and what outcomes they have experienced in order to give other families a complete picture of HH.

Colby is now 4.5 yrs old. He was diagnosed with HH at 2.75 yrs old when he had a complex partial seizure that lasted 15 mins. The team at BNI/PCH recommended he have laser ablation surgery. On Oct. 23rd, 2013, he went in and after 7 hours of surgery came out looking pretty good. He had a slight fever once he reached the ICU. Two days later we noticed that the left side of his face did not smile like his right. We also noticed that his drive for food was a little extreme. He would ask for food all day long. About a […]

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Call to Action for Rare Epilepsy Network for Hypothalamic Hamartoma

Happy New Year to all of our Hope for Hypothalamic Hamartomas Patients & Caregivers!

We realize everyone is busy this time of year, but we are asking you to please take time to enroll in the Rare Epilepsy Network (REN), which is a very important research study that the Hope for HH is participating in with the Epilepsy Foundation. As you will recall, EF and 10 other rare epilepsy groups were awarded $1M grant to establish a registry to better understand HH and other rare epilepsies.

We have committed to enrolling a large number of families and we are below our target. The Epilepsy Foundation will be applying for 3 more years of funding to continue the REN and we need to quickly get our number of registered patients up.

Hope for HH set a goal of 110 patients registered. Only 26 have signed up so far. Please help us meet goals for HH by signing up Today. The survey will take just 45 minutes max. It is broken up into sections and you can complete it over several days. No medical records are required, although you will be asked if you have EEG or MRI reports that can be […]

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Making Progress and Call to Action for Laser Ablation Petition

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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 […]

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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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