This program is a special segment on the new HH laser surgery technique being pioneered by Dr. Curry at Texas Children's Hospital. The story features 2 of our HH families that have recently undergone the surgery.
The following email is being sent to everyone who is on the HopeforHH.org mailing list. If you do not receive this by email, please read and respond. The information below tells why this is so important. And if you would like to be on our mailing list, please go the HopeforHH.org website and sign up for the newsletter.
Do YOU Want to Know WHY Your Loved One Has HH?
So do we! That’s why a top priority for Hope for Hypothalamic Hamartomas (Hope for HH) is to create an HH REGISTRY. A registry is a database of information that can help doctors and researchers better understand and answer a lot of questions about a medical condition including:
who is diagnosed with HH
what types of HH people have
what is the average age of diagnosis
what are the most common HH symptoms
which treatments are effective and which ones are not
why do some patients have rages and others do not
and many more!
Why Did YOU Receive this Email?
You may be wondering why you are receiving this email in the first place. You have been identified by Hope for HH as either an HH PATIENT or CAREGIVER. We wanted to let you know that a federally funded organization has made available $12 Million dollars to better understand diseases. A group of epilepsy organizations – led by the Epilepsy Foundation (EF) – are joining together to apply for a $1M grant to create a “rare epilepsy registry.” Hypothalamic Hamartomas and our foundation Hope for HH is one of the organizations that EF invited to participate in this collaborative project. Believe it or not, while there are registries for cancer, downs syndrome, diabetes, multiple sclerosis, autism – there is no EPILEPSY REGISTRY – and especially one focused on the RAREST of EPILEPSIES like HH.
How can YOU HELP?
Here’s the catch – the ONLY way hypothalamic hamartomas and Hope for HH can participate in this extraordinary project is if we have the commitment of our HH patients and caregivers. To qualify for this $1m grant, each organization has to ensure 80% patient participation. Hope for HH will need the full commitment of 100 United States based HH patients – no easy task in our small community. We hope this effort will ultimately include the international community as well – but the funding grant is to begin in the US.
So before we dedicate very limited time and money, we wanted to ask YOU if you will actively participate in this project. To help you decide, here are a few of the things we will ask you to do:
STEP ONE: Reply to this email that YES – you are interested in participating in this project by June 28th.
STEP TWO: You will receive a form to update your contact information with HH.
STEP THREE: If the “rare epilepsies” win the $1M grant, you will be asked to complete a detailed intake form about your HH diagnosis, symptoms and treatment in a timely and complete fashion. You may also be asked to gather and submit medical records and reports to confirm your diagnosis and supplement the information you have provided.
STEP FOUR: Once the registry is up and running, you may be invited to participate in clinical trials. You are under NO obligation. But you will hear about cutting edge research first.
What about my privacy or the privacy of my child?
Please be assured the entire Hope for HH Board are caregivers of HH patients and we are 100% committed to protecting your sensitive medical information and privacy above all else. The registry will include information safeguards so that each patients information will be “de-identified” so no one who looks at the data can identify you or your child. Your child’s information will be assigned a code. If a researcher is interested in learning more about your child, the researcher will ask for permission to contact you. A scientist will not be able to receive any identifying information about your child unless you give explicit consent for your child’s identity to be released to that researcher.
Why is this project critically important?
We just can’t emphasize enough how important this project and the participation of the HH community is. We are a small and dispersed community and registries to understand diseases are very expenses. The foundation has been working for two years to try and figure out how to fund a registry just for HH – but with registry costs over $50,000 annually and a total population of HH patients estimated at 30,000 – their is no way for our small, volunteer run and funded organization to fund and sustain a registry. If we can join in this effort, we will be able to leverage resources of the best doctors and researchers in epilepsy bringing greater awareness and understanding to our small, but devastating condition.
The Board of HH is Asking You to Step Up & HELP
Everyday we think, why did my child get HH and we have to believe we are not alone and that everyone of us struggles with this. Could we have prevented it? Are we making the right choices with surgery and medicine to help our kids? How are the choices we make now going to impact our children when they are an adult? Why do some kids respond to surgery and live a seizure free life and others do not? Why do some kids have terrible rages and other side effects and others never do?
Only when we put ALL of our collective experience into a tool where dedicated doctors and researchers can start to look for patterns and similarities and test their hypothesis will we make the kind of progress that is needed to help our loved ones and perhaps prevent a future generation from hearing those dreaded words - you have HH.
Please let us know if you have any questions. To discuss any questions or concerns via phone or email feel free to reach out to:
To help us keep track of which patients/caregivers are in or out, please REPLY WITH A YES OR NO to: Ilene Miller. Include your name, your patients name if its not yourself, email, phone number and your reply.
The last two weeks since returning home from Texas have been weird. The first week home Eli did very well. I saw a clear difference in his behaviors and his happiness. He was able to manage his emotions better, and although he still had a few difficulties overall he was able to quickly calm down when frustrated or angry. He also seemed happier than I’ve seen him in months.
There were a few things I noticed that worried me but I know I am hyper aware and hoped that my concerns were just simple paranoia. I noticed some staring episodes that he has not had in the past and began worrying they were absenceseizures. And he had a handful of unprompted laughters but they were very different than his laughing (gelastic) seizures from before the surgery. Most of unprompted laughter came just before he fell asleep too- just like the gelastics. Then, this past Monday night, he had a partial complex seizure at 10pm. It lasted about 5 minutes, way longer than any other seizure that he has had in the past. He was rushed by ambulance to the emergency room. That evening he had things that we were assuming [...]
Last week, when going through the papers sent home in Ezri’s backpack, I found a note about summer school, it’s dates, and a form attached regarding the need of bus transportation (or not). In the note there was mention of a previous note about summer school, that if we were receiving this the “child” was not proficient to grade level reading and math, and that the principal had the final say in whether the child would be allowed to move on to the next grade level. Though Ezri not being quite up to grade level in reading and math came as no big surprise for us, the idea of summer school was a huge surprise as we had missed whatever note had come home previously and the teacher had not noted it or said anything terribly concerning about her being behind. In fact, despite all of us knowing that it takes Ezri more time to ‘learn,’ every conversation with her teacher and resource teacher had been very positive. I was even noticing recently on her 3rd quarter report card that she had almost all checks in places of the minuses from the beginning of the year and was so thrilled [...]
We have opened a page on bigcartel to sell HopeforHH t-shirts from the National Epilepsy Walk in Washington, DC last April. The sales from these shirts will go to support HopeforHH. If we get a good response to these, we will be able to offer another design and make more sizes available. The sizes available now are Medium, Large, and XL. The shirt shown below is a Medium. The shirts are so nice as they are done in beautiful colors and are a high quality knit.
Over the past two weeks Ezri (and Kes) have gotten the opportunity to go to two of our nearby kids museums. This is a treat for them as we only end up going about once a year and sometimes it is a difficult trip that Ezri cannot enjoy. If she is having a hard day, with a lot of the background seizure activity and poor emotional state, the commotion of all the kids and the transition into an environment she is not familiar with can be too much for her. In the past, I have ended up carrying her or sitting on the sidelines with her in a quieter area.
On Friday the 17th of May, Ezri’s kindergarten class and the others at her school all went to Marbles kids museum in Raleigh. I was a chaperone, as I feel its a necessity to go on Ezri’s field trips (she doesn’t get a one on one aide, and I worry if she were to start having her seizure activity and another parent not being familiar with how to handle it or her – usually parents are in charge of 4-6 kids and they go off on their own [...]
This educational video from the Epilepsy Foundation of Colorado is one of many resources on the web. It discusses different types of seizures and epilepsy in general. It features a diverse group of people who are living a normal life with epilepsy. While it does not discuss hypothalamic hamartoma specifically, we can all find much in common with these individuals.
Eli was out of the hospital the next day after his laser ablation surgery. I felt weird that after such a major surgery, to the deepest part of the brain, wouldn’t require more time in the hospital. But he seemed okay, looked fine, and I heard similar positive stories from other families’ experiences. We got back to the hotel room about 5pm. Eli was sluggish and hungry. He layed around on the couch watching television and shoveling anything he could into his mouth. He fell asleep on the couch around 8pm and as we transferred him to his bed we noticed a tennis ball sized bump on his forehead. It was quite alarming to see. Over the next two days we called the on-call neurosurgeon twice and emailed pictures of Eli to Dr. Curry’s nurse twice. Eli’s right eye was completely swollen shut for two days. At various other times the side of his face was bulging, and his forehead was misshapen. But there was no fluid coming out of his wound so they did not seem too concerned. Dr. Curry finally said to take him to the ER- where they decided that Eli was having a difficult time with [...]
Faith’s school has a new educational psychologist recently. I’d met her once at a statementing meeting, at which, she had suggested we meet up again with the class teacher and Faith’s one to one.
The meeting was this week. She stated she felt Faith’s school file was all about what sounds, spellings and numbers she knew but nothing explaining what made a good or bad day for Faith.
She started the meeting with a blank piece of paper and the three of us just talked about Faith and what helped her or what upset her. In the meantime the educational psychologist was busy writing things down and eventually came up with a wonderful A4 sized plan of what Faith needed to be able to have a more enjoyable day at school. Meaning she would hopefully find it easier to learn.
I found it very interesting when the class teacher and the one to one added their insight and experience with Faith in the classroom setting. Her one to one explained that when they are doing spellings, Faith will write the first few letters to the word and then if she’s forgotten the rest and Sue or the teacher tells her [...]
In an effort to keep you up to date and provide information about educational opportunities in the epilepsy community, we wanted to give you a link to this upcoming Webinar.
The past couple of weeks have been pretty average for Ezri. We’ve had good days and bad days, and good parts of days and bad parts of days. We tried the Nuedextra medication, which seemed like it helped minimally if at all, and so we decided it wasn’t worth taking something that had little or no effect and have discontinued it (and besides, making Ezri take pills is a horrible experience!).
The biggest ‘project’ we’ve been dealing with lately is with the schools. Over the last year or so, a new elementary school has been constructed nearby (still in construction) and slated to open in Fall 2013. It is a beautiful school and a wonderful opportunity for all the children being redistricted there as there will be the latest technology, and “green, power-saving” materials being used. However, for Ezri, it is a huge change that will cost her academically as her adjustment process takes much longer than a typical child.
We witnessed this long adjustment process just this last year with the start of kindergarten as moving up to kindergarten required us to change schools. In our school system, only two of the multiple elementary schools have PreK classes with [...]
