Rare Epilepsies Registry Survey Feb-March 2014

HH Families - please take a moment to fill out a 5 question survey for planning and development of the Rare Epilepsies Registry.

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Home Schooling

Long before Colby was diagnosed with HH, we had decided as a family to homeschool our two boys. For our family there were many reasons why we were choosing this path for their education. Our oldest child has a ton of energy and has a hard time sitting still but he was ready for school. Having school at home gave us the chance to adjust the school schedule to fit his abilities. He is excelling in school and is finally getting to the point that he can sit still and focus. We can go as fast or slow as needed. We also use a Christian based school that includes Bible studies and a focus on good morals and behavior.

When we found out about Colby and HH, we realized all the reasons for homeschooling our oldest applied for him also. Being able to work around his abilities, focus on areas that he needs improvement and push forward with the areas he does well is a blessing. Being at home also gives him time to nap and have time outs when needed. We also belong to a homeschool group with a good number on field trips, family activities or group lessons to help with socialization. We have many resources, both on the internet and in the city, to supplement what we lack.

Our oldest son will be in 2nd grade and Colby in preschool next year. We always keep an open mind about what path to take with school, but for now this seems to be working well. Homeschooling is not for everyone, but if you are interested in learning more I would be happy to share what I have learned. My e-mail is KathyJensen@cox.net. I think as long as we constantly try to do what is best for our children, they will do well and know that they are loved.

 

Improvements with Zonisamide

2014-04-05 Faith

This is the name of the new medication Faith is on and has been on for about four months. We had a few years without medication as nothing was making any difference to her seizures and she seemed to have more side effects than good effects to the previous medication. Then as mentioned in previous blogs, she developed these new seizures whereby her head would turn to the side and she was unresponsive for a few minutes.

Around this time also, school had seen a big drop in her understanding and ability to retain information so that her school work was suffering. I had started to consider sending her to a special unit and leaving the mainstream setting.

We started Zonisamide in November. As with most medications over here in the UK, it was fairly new to our hospital pharmacy, so initially we had to wait for approval and policies to be written and agreed. But since she has started it, her new seizures have, dare I say it, gone, and her usual gelastic, partial complex have reduced, though occasionally when she does have one it can be a longer one, lasting few minutes. But still she’s gone from having [...]

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HH Family Getaway for 2015

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We have heard from many HH families that would like to learn more about HH and speak with other HH families regarding their journey. With this in mind, we would like to have a HH family getaway that may include an educational portion to the weekend and a family picnic in the summer of 2015. Please let us know if you would consider coming and what city and state you will be traveling from. No commitment at this time, just want to see who would be interested and what part of the country/world they would be coming from. It will be nice to have families together that can understand the struggles and simple joys we experience everyday.

Please email Kathy Jensen or leave a comment below if you are interested. We look forward to hearing from you!

Lisa Soeby, Mauri Jones, and Kathy Jensen

 

School

2013-05-23 Faith - Copy

Rightly or wrongly we made the decision when Faith started school to send her to mainstream with support. She is now Seven in a couple of months and I do wonder if I made the right decision.

The School has been amazing and very supportive of Faith and her one to one support is outstanding, but I do feel the school day is too much for her in some respects. She appears to demonstrate more aggressive behaviour on a school week than what we are seeing on a half term week. I’m not sure if this is due to her being more tired, worried about her school work, frustrated with the school environment or a mixture of everything. On a recent cognitive assessment that was carried out by a community psychologist it has shown that Faith is behind in all areas coming out at a 4-5 year old. I hate that I might have put the extra pressure on her with her school life, by not sending her to a special unit.

When we initially made the decision, it was based on her being such a strong character enjoying to learn and she had already made lovely friends who would [...]

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We’re Learning to Live with HH

2014-03-05 Eli (Custom)

We have found over the last year that getting this rare diagnosis has made us feel very isolated at times. People (including us) don’t understand everything that HH entails and how it affects our daily life. We have been lucky to have such loving family to help us when they can, but they all live two states away. Our friends in Baltimore try to be supportive, but they all live their own busy lives. In some of our most stressful times where Jeff and I can really use a date night we fear calling a sitter who may have to deal with seizures or difficult behaviors. We also don’t want to spend extra money when dealing with medical expenses has made discretionary funds tight. We feel we cannot ask friends because that is just as big a responsibility and we don’t want to jeopardize the friendship. So we mostly deal with it on our own the best we can.

It’s even isolating when your local doctor and your treatment doctors don’t communicate well with each other or with you. You feel confused and abandoned.

People ask how they can help but we never know what to say. Yes we want/need [...]

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Epilepsia Article: Hope for HH–Cofounders stories

Epilepsia

In the March 1, 2014 edition of the journal, Epilepsia, you will find the stories of the cofounders of Hope for Hypothalamic Hamartomas. These stories tell the struggles and triumphs that have inspired and driven three families to make the difference and to offer hope to the hundreds of children born with hypothalamic hamartoma. We all owe them a deep debt of gratitude for the work they have done with the families and with the medical community worldwide.

 

 

Family, Friends and HH

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I am amazed It is already the end of February. It has been four months since Colby’s surgery and I have so many thoughts bouncing through my head. HH has changed our entire family. The way we look at life, the way we cherish every moment, the way we handle the melt downs. I consider our journey short so far, it has only been a year since Colby’s diagnosis. Everytime we go to see the doctor we learn more about HH. But with the answers we find many more “I don’t knows”. I have so many questions about what to do next, what is best for him, is that really a seizure or is he just being silly? In the past year I have had the chance to meet some of the HH families. I am amazed how talking to another mom with a child with HH can help calm my doubts. Having someone to compare notes, compare behavior and share everyday challenges makes the hard days so much easier. Just being able to read about someone’s story is helpful. I am grateful for our HH community. I know my strong days help those who are going through their bad [...]

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Update on Faith

2012-10-30 Faith and puppy01

This is a brief update on Faith, as it’s been so long since I’ve written anything. I think last time I wrote we were trying clobazam for the new seizures she was experiencing. It worked wonderfully for the seizures stopping them straight away. Sadly, it increased her outrages to an extreme that we could not cope with as a family. She was uncontrollable. As soon as the clobazam was stopped the outrages reduced to her normal more controllable outbursts. Unfortunately, the new seizures of head turning and being unaware came back with severity. Her neurologist suggested trying a fairly new drug on the market over here in the UK called Zonisamide. Thankfully this has worked amazingly, her new seizures have stopped and her usually gelastic, partial complex have reduced also.  Her rages and unpredictable, irrational behavior still persist, and she is still have episodes of incontinence. We are just relieved to have the new seizures under control.

 

Your Input Needed for the Rare Epilepsy Registry

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Thank you again to EVERYONE who supports the Rare Epilepsy Registry. We feel privileged to be a part of this program. You will soon be hearing more information about this important project and how it can help patients and physicians better understand HH and other rare epilepsies. We hope everyone who has been affected by HH will join us in making the Registry a success.

The registry organizers want to hear from ALL HH patients and caregivers about what you believe is important to learn from the registry. You can do this by responding to a very brief 5 question survey. You can make a big difference to improving care for HH and the success of this project by completing this survey.

Click HERE to access the survey. If you have questions, feel free to contact Ilene Penn-Miller.

 

Getting Better Care

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February 28th is worldwide Rare Disease Day and the theme this year is “Join Together for Better Care”. This is a huge issue for our HH community for many, many reasons! On the National Rare Disease Day 2014 website, they describe our universal struggle very well.

 “Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.”

At the core of what Hope for HH is striving to do is to connect patients and medical professionals to shorten the time to correct diagnosis and improve the quality of care for every individual. This can be challenging because there is such a wide spectrum on which any HH patient call fall – from minimal impact to everyday living to extremely poor quality of life for both the individual [...]

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