Month: October 2014

Epilepsy Awareness Squad’s New Partner: Youth Empowerment Project

We are thrilled to announce the launch of our new non-profit organization: The Youth Empowerment Project (YEP). While we are still passionately committed to the Epilepsy Awareness Squad, we also want to broaden our focus and help other young people like ourselves follow their passion to make change in the world.

The Youth Empowerment Project is aimed at doing just that! Through online and in person campaigns we are helping youth to take causes their care about to the next level.

The Epilepsy Awareness Squad will continue with our work under the Health Initiative Corridor of the Youth Empowerment Project. Caitie will be heading up this sector of YEP along with the Social Media corridor. Dan will head up the Social Justice and Environmental Corridors of YEP. Both of us will continue working on campaigns for Epilepsy Awareness.

Our first campaign is underway! We are excited to announce the #cyberlove campaign aimed at stopping cyberhate and flooding social media platforms with positive messages. You can find more about this campaign here!

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Tom’s Story

by Sue Perry

Tom was born a perfectly normal beautiful baby on 7th December 1993. For 5 months he developed in the same way as any other baby, and then he had a massive seizure lasting 40 minutes and was unconscious for 9 hours, we thought we were going to lose him. After that he had regular seizures every few weeks but was put on medication and continued to develop normally.

Tom started school at Staplehurst Primary School in the September before his 5th birthday and was doing well until he was 5 1/2 when his medication stopped working. For the next two years we went through a nightmare time while his consultant at Guys Hospital tried to get his epilepsy under control. We discovered that Tom was, and still is, very sensitive to medication changes. Each new medication would either not work at all, would work for a short period of time and then stop having any effect, or would make his seizures worse.

We would regularly do emergency dashes up to Guys Hospital after he had approximately 24 seizures, often before midnight after he’d gone to bed at 7ish, then I would stay in hospital with him, usually for several weeks at a time while they tried to stop his seizures and my husband would come to the hospital each day after work, it was a dreadful time.

My other two children were thankfully older, my son Chris was 15 and my daughter Kate 17, unfortunately Tom had to be our main focus, which was hard on them. This pattern of events went on for the next two years until eventually Tom was under reasonable control with a maximum of 7 seizures a night and taking 7 different medications. Unfortunately by the time he was ready to go back to school he had learning difficulties with behavioural problems, so Staplehurst School was no longer suitable for him and he was given a place at Bower Grove Special School in Maidstone.

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He happily stayed at Bower Grove until he was 14 when they could no longer meet his challenging needs. It was then suggested to us that it would be in his best interests to go to residential school. This was the hardest decision my husband and I have ever had to make. We didn’t want anyone else looking after our little boy, or to have to trust anyone else to look after him, but we did it, and he went to a school that specializes in severe epilepsy called Young Epilepsy. He has now completed 4 years in the Young Epilepsy School and is in his second year in their college where he is learning valuable life skills. It has been really good for Tom, allowing him to mature and to learn to be as independent as he can be. He can now get himself dressed, clean his own teeth and is learning to wash his hair himself.

Tom will never be able to be independent as we know it. He will always need a high level of medical care as he still has seizures most nights, sometimes 6, and is at high risk of dying in his sleep due to a condition called SUDEP (sudden unexplained death in epilepsy). He will have to live in residential care for the rest of his life with 1-1 care for his safety during seizures and also due to his unpredictable behaviour; he can get quite angry at times.

At 15 Tom was diagnosed with Dravet syndrome a genetic condition which causes severe epilepsy. This is a fairly new condition discovered by Charlotte Dravet. There is (as yet) no cure, and no one really knows what the life expectancy is. One in 40,000 children has this condition and they all have similar stories to ours, some have died through this horrible condition, which is why my husband and I researched and developed Pulseguard.

Pulseguard is a new heart rate monitoring system, which will trigger an alarm if Tom’s heart rate rises above the perimeter that we set it at, Tom’s heart rate always rises when he has a seizure. But also it will set off an alarm if Tom’s heart rate drops so that we can get to Tom fast and try to prevent SUDEP. We want to safeguard Tom as best we can. Due to the success of PulseGuard for Tom we are now ready to share it with other families that are in a similar position to Tom.

About Pulseguard

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Pulseguard is a system developed by a family for their son Tom, who has severe epilepsy. It is unlike any other system on the market, in the fact that it monitors and detects any rise and fall in the heart rate and if the heart rate goes outside the parameters you set, an alarm is triggered.

PulseGuard TM was inspired by Adrian and Sue Perry one morning in 2012 whilst reviewing the previous night’s video footage of Tom’s seizure activity.

Tom suffers from Dravet Syndrome and generally only has his seizures whilst he is asleep; Sue and Adrian have a seizure alarm under Tom’s mattress that detects movements during a tonic clonic seizure and an audible monitor to detect any gasps or noises during a seizure. They also have a CCTV camera above his bed head that activates recording during any movement so that they can review the previous night’s seizures, if any.

It was during the playback, they discovered that they had missed quite a prolonged seizure that occurred during the night where Tom’s movements were not enough to activate the under mattress alarm and he had his face buried in his pillow so no noise was picked up.

After seeing this they were very concerned, because Tom is at high risk of SUDEP (sudden unexplained death in Epilepsy) and needs to be monitored carefully. They realized they required a better system that would safeguard Tom. So they started to research further to see if a better alarm system existed that would give a warning if the same situation ever arose again.

After a great deal of research they discovered that there was no system on the market that could accurately detect the onset of a seizure in Tom so they decided to try and design their own.

They looked for one constant condition that existed when Tom had any kind of seizure and they remembered from a previous conversation with Tom’s consultant after he had had a telemetry EEG, where she explained that when Tom had a seizure his heart rate increased dramatically and was like that of running a marathon.

When Sue and Adrian couldn’t find a monitor to suit Toms needs, they decided to try and create a system that would detect Tom’s heart rate and transmit it wirelessly to a device that would monitor and provide an alarm if Tom’s heart rate increased or decreased, so that they would not only be alerted if Tom was having a seizure but also be given peace of mind in early detection of SUDEP (sudden unexpected death in epilepsy).

At this point they started to develop an app for Apple with the help from an American Neuro – Scientist, who was interested in the project and wanted to help in developing Pulseguard.

Later in the project, their son Chris came on board (an IT Engineer) who took over the final modifications to the App and their daughter Kate an (Emergency Medical Technician in the Ambulance Service) also came on board to help with the research and development and complete the family team that makes up Adris today.

After extensive research we settled on the current sensor device that straps to Toms Ankle or wrist and works by shining a light in to his skin that monitors the blood flow through the capillaries giving an extremely accurate heart rate indication which is then sent to the iPad app via Bluetooth technology.

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After discovering that PulseGuard had successfully alerted on every one of Tom’s seizures with none missed and whilst talking to Tom’s consultants and other Epilepsy professionals and parents, it was very clear that a lot of other people were interested in having an alarm system that seemed to be as accurate as it was, so they decided to set up Adris Technologies (a family run business) to develop and market the system so that others can benefit from this technology.

We are due to launch to the UK public on 22nd September 2014, for more information, visit www.Adristechnologies.com. There is also a Kickstarter campaign set up to get Pulseguard to the United States. You can support this campaign here: https://www.kickstarter.com/projects/1182251268/pulseguard-pioneering-heart-rate-monitoring-system?ref=email

Robert’s Story

By Trish Hughes Kreis, Robert’s Sister

Robert is my youngest brother and has lived with uncontrolled seizures his entire life. He is physically and cognitively impaired and seems to have an additional diagnosis of a new problem every couple of months. He has gone from an energetic young boy who was able to graduate high school and even take a few college courses to living independently as a young adult to now needing full-time care.

Robert’s brain has been traumatized by two brain surgeries, numerous concussions and countless seizures. He was recently given additional diagnoses of Restrictive Lung Disease, Parkinsonism and Cumulative Traumatic Encephalomyopathy (CTEM).

After living independently and then a few attempts at living in an Assisted Living Facility and a Board and Care home, Robert now lives with me and my husband. This living situation is the best for all of us although with Robert’s declining mobility we may eventually need to place him in a facility that can provide him all the care he needs as his needs increase.

For now, my husband and I do our best to keep Robert healthy, happy and safe.

Sometimes it seems as if Robert loses just a little bit more of something all the time. Yet every time I am disheartened that he is in a wheelchair now more than he isn’t or that he is frequently in the hospital with pneumonia or getting a new diagnosis of Parkinsonism, I am reminded of his positive attitude and ability to make a joke out of everything.

Robert loves to laugh and to make others laugh with him although he hasn’t always been this way. In fact, he was a moody, withdrawn and angry teenager and young man. His uncontrolled seizures as well as the side-effects from his medications took its toll and Robert lashed out and was very unpleasant to be around.

This behaviour and attitude affected our relationship and I only talked to Robert on occasion – not nearly as much as I thought I “should.” He seemed to be stable living with a companion who also had epilepsy. Our dad lived in the same city as Robert and provided a little bit of assistance. Robert and his companion (whom he would have married if their benefits wouldn’t have been affected) spent their time taking care of each other, attending church and going to doctor appointments on their own.

Six years ago, it became apparent Robert was not making safe choices in his living situation and his memory was failing. He was forgetting to go to doctor appointments, fell prey to several financial scams, and even allowed a homeless woman to move in with him and his companion. Robert also developed a life-threatening infection during this time.

Time to step in!

Since caring for Robert, I have learned a great deal about Robert, my husband and myself. With regards to Robert, his faith never waivers and he never ceases to inspire me with his nightly prayer for his seizures to stop. Robert’s sense of humour keeps people smiling as he likes to joke about drinking whiskey or traveling to New York City (we live in California and, of course, he doesn’t drink).

My husband and I work well as a team and he continues to amaze me with his willingness to continue to help while dealing with his own chronic pain.

Robert has shared with me his belief that his purpose in life is to educate people about epilepsy. Robert had a near death experience as a teenager and has been extremely devout and devoted to spreading awareness ever since then.

I’m happy to be his “spokesperson” so we can help others in caregiving situations as well as spread awareness and education about epilepsy. I write our stories at www.RobertsSister.com and can also be found on Facebook and Twitter @RobertsSister1.

Robert, Richard and I will be doing a series of videos about epilepsy and the effect it has had on Robert’s life during Epilepsy Awareness Month in November. I hope Robert’s messages inspire others not to give up on a cure for Epilepsy!

About Trish Hughes Kreis:

Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates on behalf of her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible.

Trish’s advocacy work includes working to expand the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act. Trish has also participated in a number of interviews on managing life as a working caregiver.

Trish is passionate about helping Robert fulfill his expressed life purpose of spreading awareness and education about epilepsy. However, she is on a no less important mission of keeping a steady supply of Jeopardy and Family Feud shows recorded for him as the simple things are what make Robert truly happy

Trish is the author of Forever a Caregiver and can be reached through her blog www.RobertsSister.com, Facebook at http://www.facebook.com/RobertsSister and Twitter @RobertsSister1.

When Do You Stop Counting?

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Yesterday I attended my first We Day with Caitie and Dan in Toronto. This was Caitie’s 4th We Day and Dan’s 3rd so I’d heard about how amazing this event was for years. And it absolutely was just as inspiring as everyone had told me it would be. But yesterday was amazing for another reason: yesterday marked Caitie’s 8th week of no seizures and that is a pretty big deal!

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Someone asked me when we stop counting? When does having no seizures just translate to a normal day? I don’t know. This is the longest seizure free streak Caitie’s had since she turned 10. And right now she is not taking any anti-seizure meds and she came off the Keto diet almost 2 months ago. So we are doing pretty good. No, we are doing AMAZING!

But when do we stop living with that worry that a seizure might come. As awesome as yesterday was, there were little reminders of Caitie’s epilepsy sprinkled throughout the event. I did have to tell one of the We Day producers at rehearsal that Caitie has seizures (although she is not photosensitive). I did worry when she barely slept the night before (due to excitement and a bad cold) that she would overtired on stage. Even she worried a little bit that she might have a seizure in front of 20,000 in the audience (her worst nightmare). Lightening the mood, Danny pointed out that it would be a good lesson in seizure safety if she did. And when I had to find her a seat and ask the hosts at the after party for a glass of water when we arrived because she was feeling off, we watched her closely to make sure she wasn’t going to have a seizure. After only 8 weeks, the memory of seizures is too close to ignore any of those things.

Last weekend after the kids presented at the Canadian Student Leadership Conference, Caitie burst into tears on the ride home. Worried I asked her what was wrong. She said, “I’m just so happy, Mum. Everything is so perfect right now.” Then she paused and took a deep breath before adding, “And I’m scared it will go back to how it was last year.”

And last year was bad. It truly amazes me what Caitie and Dan have done in the last 15 months given the rollercoaster ride we’ve been on with Caitie’s health. In the last year and a half she’s had 65 seizures (that we know of). And Caitie would say that’s not so much compared to some people. But trust me, it’s enough. I think their work with the Epilepsy Awareness Squad has really made all the ups and downs of this disorder a lot easier to handle. Taking the focus off oneself and shining it outward can make even the most miserable moments a bit brighter.

I hope that one day we will get to the place where we don’t need to count the number of days Caitie has been seizure free. But right now, I’m grateful for every one of those days that we do have. And for the positive attitude that makes the EA Squad so empowering!

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