We received Belle November 7, 2010. We have been working on basic obedience and socialization skills.
Belle now can sit, stay, down and follow Sarah reasonably well on the leash.
Housetraining has been an ongoing task. She has few accidents, but you still have to watch her closely.
Belle's favorite thing to do is drag items to us. She likes to bring me the bag of potatoes and the flat of water, she is so proud of herself!
She enjoys the water, as in trying to "swim" in the water bowl, so we have removed that from the floor!
She loves to hide in the shower or tub! Must be cool in there!
She stays by Sarah's side for the majority of the day. She waits patiently for Sarah to finish her chores and meals. She "knows" when we are working and when we are playing. She is very very smart and we love her dearly!
Sunday, November 28, 2010
Sunday, August 29, 2010
Thursday, August 26, 2010
Wednesday, August 25, 2010
Monday, August 23, 2010
Tee shirts and briskets!
We are currently taking orders for seizuredog4sarah tee shirts...they will be a white tee with purple lettering to also include the epilepsy ribbon! Pic to come soon!
We are also taking orders for briskets that are BBQ to perfection! $35.00 each.
Contact me at seizuredog4sarah@yahoo.com for ordering information!
We are also taking orders for briskets that are BBQ to perfection! $35.00 each.
Contact me at seizuredog4sarah@yahoo.com for ordering information!
A big thank you goes to....
Did you know that coordinating a benefit is hard work? Man, just getting the word out is hard enough!
I would like to thank Higgie with San Jacinto High Rollers/Waller Co Chapter for helping to spread the word about the benefit.
I would also like to thank Barbara at Magnolia Party Depot for all of her help today!
God Bless everyone for helping me out....even if it has been advice!
I would like to thank Higgie with San Jacinto High Rollers/Waller Co Chapter for helping to spread the word about the benefit.
I would also like to thank Barbara at Magnolia Party Depot for all of her help today!
God Bless everyone for helping me out....even if it has been advice!
Wednesday, August 18, 2010
Finding a puppy
I just got off the phone with the trainer and she is having difficulty getting a Newfoundland pup at the right age. The breeder she was working with no longer returns her calls so she is actively looking for another breeder. Worst case scenario is 6 weeks out, her local breeder has brand new pups!
Wednesday, August 11, 2010
Friday, August 6, 2010
A letter from aunt Meg (this made me cry)
I can still remember the day I met Sarah for the first time. She was a baby all swaddled up in a stroller waiting on the annual Magnolia Christmas Parade to start. I was a young 15 year old girl there with my Aunt Maggie who happens to be one of Sarah's mom Carrie's longest friends. The thing I remember the most about her is that she was she was a little freckled angel. So many freckles, so beautiful and so quiet. At the time I had no I idea how this Angel would impact my life.
A few years went by and I was asked to babysit Sarah and her oh so indepedent little brother Josh during the summer while Carrie was at work. I had babysat them before but only a hour or two here and there. Anyway, I jumped on the chance. I was a teenager and of course I would, spending money anyone? Right away Carrie, Care Bear as I call her, and I hit it off. She never treated me like a kid and for this I have always been incredibly thankful. I had heard all about how Sarah has seizures but it wasn't a part of my daily life so it was easy to ignore, dismiss probably being the correct term. When your young it's a shame to say that you tend to only care about those things that directly impact you and those things alone. At the time Sarah's world and mine were vastly seperated.
Before I babysat Carrie asked me to come over and hang out, get to know the kids daily routine and explain Sarah's condition, known as epilepsy, to me. I did go over and listened to everything she told me, her seizures at the time were more of a space out thing. I was told how to recognize one and I was also told about a shot that could be used if need be. I was overwhelmed but hopeful that I would never see one take place. Looking at her you'de never know that she was any diffrent from me or you for that matter. She was/is full of life and an old soul. Like I said I listened and made up my mind that I could do this, I could and would care for this angel and her brother.
The first couple of days or weeks, long enough for me to feel 100% confident that she would never have a seizure on my watch, everything went off without a hitch. Josh was always outside, no joke the moment the sun came up that boy was outdoors making something or tinkering with something, however always aware of Sarah and at times acting like a protective older brother and Sarah being the girly girl that she is was always wanting to play dolls or makeup. She was always at my side. It wasn't long before, probably only seconds really, that I fell madly inlove with these two babies. I adored them and still do even though they are young teens now. This is the part that I tell you my world opened up and I realized that sometimes things just happen.
I can't tell you exactly what happened as in what we were doing or how that day had been prior to her seizure. Carrie had told me that morning that Sarah had been showing signs but I just kept her a bit closer than usual and went about the day as normally as I always have. For me not being the Mom and having never seen a seizure before it wasn't as easy to anticipate. I do remember Sarah coming into the living room and sitting down. I recall how her eyes were looking all the way up to the left and how she wouldn't respond to me speaking to her asking if she was okay. I kinda panicked. Josh came in at that exact moment and something about him walking in sobered me up. I was watching these two babies, they were in my care and I WOULD handle this. I called Carrie about the same time that Sarah started crying. I remember it making such an impact on me that this little girl, who has had so many of these attacks, was so scared and overwhelmed with what had just happened to her. Carrie spoke with Sarah and she calmed down a bit and then got me back on the phone and told me that Sarah would want to sleep and to let her but wake her up every once in awhile. It wasn't long before Carrie came home and I was so happy to see her walk in. Care Bear is called Care Bear for a reason. She is so strong, incredibly strong and I have no hesitation in saying I aim to be more like her everyday.
To say that I was terrified was an understatement. This wasn't about me anymore. How could this be fair? Why Sarah? Would this be, is this her life? How was Carrie so strong? How was Josh so strong? Most importantly how was Sarah this strong? It all seemed and still seems so unfair, so surreal, unbelievable.
Sarah has had two seizures during my watch. One that summer and then another one a year or so later. I don't think that it will ever become easy for me to experience but this story isn't about me, it's about a family that endures more than I will ever know. This is the only life they know, will ever know. It's about an angel named Sarah who has epilepsy and still manages to greet every morning with a smile.
Sarah gives the best hugs, infact I teased her about them last weekend. She will hug you, put her arms around you and squeeze until it hurts. She is beautiful and giving, kind and funny. More grown up than most sixteen year old girls and yet so much more vunerable that any other girl her age.
She did have a surgery a few years back that removed scar tissue from her frontal lobe and although everyone was hopeful that it would cure her seizures it has actually come to pass that she is having more and more with each passing year. They have become more violent as well. It has recently been suggested that she undergo a second operation but she doesn't want it. The first one was horrible for her and no amount of time or seizures will ever make her forget it. Besides that the side affects of this surgery pose such a risk. She could lose her ability of speech. So no second surgery for Sarah but there is still hope in the future and the future is a dog that can alert and get help when, because there is no if, she has a seizure.
Above I said my world changed during that summer, and although it took me a few years to realize it, it did. Sarah taught me to live the life I am given with gusto. That if she can face the world with such strength surely I can to. That sometimes things just happen and it's not the situation that shows your character but what you make of that situation. Sarah has a purpose in her life and for me it's showing that life is precious and that you always have to live it.
If I had enough money to buy her her freedom I would. I would give everything I own for this young lady to be allowed to live a life without seizures and a "normal" life. (What is a normal life anyway?) I am asking for your help, for your kindness and your understanding. Let's come together and help her buy Belle.
I love you Sarah,
Megan
A few years went by and I was asked to babysit Sarah and her oh so indepedent little brother Josh during the summer while Carrie was at work. I had babysat them before but only a hour or two here and there. Anyway, I jumped on the chance. I was a teenager and of course I would, spending money anyone? Right away Carrie, Care Bear as I call her, and I hit it off. She never treated me like a kid and for this I have always been incredibly thankful. I had heard all about how Sarah has seizures but it wasn't a part of my daily life so it was easy to ignore, dismiss probably being the correct term. When your young it's a shame to say that you tend to only care about those things that directly impact you and those things alone. At the time Sarah's world and mine were vastly seperated.
Before I babysat Carrie asked me to come over and hang out, get to know the kids daily routine and explain Sarah's condition, known as epilepsy, to me. I did go over and listened to everything she told me, her seizures at the time were more of a space out thing. I was told how to recognize one and I was also told about a shot that could be used if need be. I was overwhelmed but hopeful that I would never see one take place. Looking at her you'de never know that she was any diffrent from me or you for that matter. She was/is full of life and an old soul. Like I said I listened and made up my mind that I could do this, I could and would care for this angel and her brother.
The first couple of days or weeks, long enough for me to feel 100% confident that she would never have a seizure on my watch, everything went off without a hitch. Josh was always outside, no joke the moment the sun came up that boy was outdoors making something or tinkering with something, however always aware of Sarah and at times acting like a protective older brother and Sarah being the girly girl that she is was always wanting to play dolls or makeup. She was always at my side. It wasn't long before, probably only seconds really, that I fell madly inlove with these two babies. I adored them and still do even though they are young teens now. This is the part that I tell you my world opened up and I realized that sometimes things just happen.
I can't tell you exactly what happened as in what we were doing or how that day had been prior to her seizure. Carrie had told me that morning that Sarah had been showing signs but I just kept her a bit closer than usual and went about the day as normally as I always have. For me not being the Mom and having never seen a seizure before it wasn't as easy to anticipate. I do remember Sarah coming into the living room and sitting down. I recall how her eyes were looking all the way up to the left and how she wouldn't respond to me speaking to her asking if she was okay. I kinda panicked. Josh came in at that exact moment and something about him walking in sobered me up. I was watching these two babies, they were in my care and I WOULD handle this. I called Carrie about the same time that Sarah started crying. I remember it making such an impact on me that this little girl, who has had so many of these attacks, was so scared and overwhelmed with what had just happened to her. Carrie spoke with Sarah and she calmed down a bit and then got me back on the phone and told me that Sarah would want to sleep and to let her but wake her up every once in awhile. It wasn't long before Carrie came home and I was so happy to see her walk in. Care Bear is called Care Bear for a reason. She is so strong, incredibly strong and I have no hesitation in saying I aim to be more like her everyday.
To say that I was terrified was an understatement. This wasn't about me anymore. How could this be fair? Why Sarah? Would this be, is this her life? How was Carrie so strong? How was Josh so strong? Most importantly how was Sarah this strong? It all seemed and still seems so unfair, so surreal, unbelievable.
Sarah has had two seizures during my watch. One that summer and then another one a year or so later. I don't think that it will ever become easy for me to experience but this story isn't about me, it's about a family that endures more than I will ever know. This is the only life they know, will ever know. It's about an angel named Sarah who has epilepsy and still manages to greet every morning with a smile.
Sarah gives the best hugs, infact I teased her about them last weekend. She will hug you, put her arms around you and squeeze until it hurts. She is beautiful and giving, kind and funny. More grown up than most sixteen year old girls and yet so much more vunerable that any other girl her age.
She did have a surgery a few years back that removed scar tissue from her frontal lobe and although everyone was hopeful that it would cure her seizures it has actually come to pass that she is having more and more with each passing year. They have become more violent as well. It has recently been suggested that she undergo a second operation but she doesn't want it. The first one was horrible for her and no amount of time or seizures will ever make her forget it. Besides that the side affects of this surgery pose such a risk. She could lose her ability of speech. So no second surgery for Sarah but there is still hope in the future and the future is a dog that can alert and get help when, because there is no if, she has a seizure.
Above I said my world changed during that summer, and although it took me a few years to realize it, it did. Sarah taught me to live the life I am given with gusto. That if she can face the world with such strength surely I can to. That sometimes things just happen and it's not the situation that shows your character but what you make of that situation. Sarah has a purpose in her life and for me it's showing that life is precious and that you always have to live it.
If I had enough money to buy her her freedom I would. I would give everything I own for this young lady to be allowed to live a life without seizures and a "normal" life. (What is a normal life anyway?) I am asking for your help, for your kindness and your understanding. Let's come together and help her buy Belle.
I love you Sarah,
Megan
Thursday, August 5, 2010
Donations can be made directly to:
You can make donations directly to the non profit agency that is training Sarah's dog. Make sure that you indicate in the memo for "Sarah Eubank".
Noelle's Dogs Four Hope
15954 Jackson Creek Parkway
Suite B, PMB #453
Monument, Co 80132
#33-1217134
Thank you for your support! We are almost there!
Also we are in dire need of donations for the raffle and auction in September!
Noelle's Dogs Four Hope
15954 Jackson Creek Parkway
Suite B, PMB #453
Monument, Co 80132
#33-1217134
Thank you for your support! We are almost there!
Also we are in dire need of donations for the raffle and auction in September!
Saturday, July 31, 2010
Garage Sale Results!
Drum Roll please! We met our goal with the garage sale! We have put a deposit on the puppy, Belle, and are awaiting her arrival!
It was very hot, but well worth it.
I would like to thank my girls who have helped me the past couple of days! You Rock! If it wasn't for good friends and family, this fundraiser would not be happening. Love to you all!
Wednesday, July 28, 2010
We have signed the contract with Noelle's Dogs Four Hope (wwww.noellesangeldogs.org)
and placed half the deposit! ($500.00). We are having the garage sale this Friday and Saturday to raise the other half of the deposit!
Please come out and shop! We have a little bit of everything, including a bed frame, double jogging stroller, car seat/stroller combo, electric stove, some furniture, bunk bed, etc! Laci will have her lemonaide stand up and running during the garage sale also! Thanks to everyone who has made a donation!
When: Friday, July 30 and Saturday, July 31 (9-4)
Where: Los Fuentes Mexican Restuarant (Thank you Rene!); 18306 FM 1488 in Magnolia
and placed half the deposit! ($500.00). We are having the garage sale this Friday and Saturday to raise the other half of the deposit!
Please come out and shop! We have a little bit of everything, including a bed frame, double jogging stroller, car seat/stroller combo, electric stove, some furniture, bunk bed, etc! Laci will have her lemonaide stand up and running during the garage sale also! Thanks to everyone who has made a donation!
When: Friday, July 30 and Saturday, July 31 (9-4)
Where: Los Fuentes Mexican Restuarant (Thank you Rene!); 18306 FM 1488 in Magnolia
Tuesday, July 27, 2010
New Trainer information
Here are the specifics with the new trainer. After we put the down payment on the pup and sign the contract, Sarah will have to raise her dog from a puppy! It is a Newfoundland pup that we will get when it is about 12 weeks old. She has to follow the trainers rules for training it. This way she and the dog bond, and the dog will take ownership of her. After a year, she takes the dog back to the trainer for further work on specific training just for Sarah. For the dog to graduate, we go with the trainer and others to Disney World in Florida. The dog must go through a series of tests there. Why Disney World? Because it is noisy, busy and the dog has to portray alot of patience, etc.
The only catch is that the dog is to be named after a Disney character!
The cost of the dog is 7500.00.
The trainer is a non-profit so donations in Sarah's name can be made directly to them and you can get the donation tax credit.
I will list the specific website once I have signed the agreement with the trainer.
The only catch is that the dog is to be named after a Disney character!
The cost of the dog is 7500.00.
The trainer is a non-profit so donations in Sarah's name can be made directly to them and you can get the donation tax credit.
I will list the specific website once I have signed the agreement with the trainer.
Monday, July 26, 2010
Exciting News!
I have found a new trainer and the cost of the dog is only $7500.00!
More details to follow after I review and sign the contract!
Sunday, July 25, 2010
Updated Benefit Flyer
Benefit for Sarah Eubank to raise the funds to purchase a Seizure Alert Dog!
Sarah is a 16 yr old teenager from Magnolia, Texas who attends Magnolia West High School. She has battled the seizures and the stigma that comes with epilepsy since being diagnosed at six years old. In 2003, she had an innovative brain surgery to remove some of the scarring on her right temporal lobe however it did not stop the seizures. For the last several years Sarah has been combating them with seizure medications that do help slow down her seizure activity, but unfortunately give her many side effects like tremors and memory loss.
A person with epilepsy soon learns that their independence is taken away from them with the diagnosis. Sarah always needs someone to accompany her, someone who is trained on how to react to her seizures. She can’t go shopping at the mall with friends, she can’t go to sleep over’s or movies without someone accompanying her. She can’t go to dances for the fear that the strobe lights will cause a seizure. She cannot attend a high school football game, what if she had a seizure in the stands, fell down and injured herself? She can never swim alone for fear of drowning due to her disease; she can't even enjoy a long hot bubble bath without having someone sit with her. The threat of being physically hurt is not the only fear, what if she had a seizure and became disoriented? All of these things keep her from being independent. She is unable to do the things that an average teenage girl wants to do and although she accepts this fact without complaint, she does deserve a chance at a “normal” life. A seizure dog would give her that chance.
Now why a seizure alert dog? This safety companion would always be with her, twenty four hours a day, seven days a week. Because it is a licensed seizure alert/response trained dog it is permitted into schools, churches, movies, malls, etc. so she will have the freedom to live life and go anywhere and everywhere with this dog. He is trained to respond and assist Sarah should a seizure occur and herd her to a safer sitting or laying down position. Simply put this seizure alert dog can save her life. I would also like for you to take into account that in some cases persons who are accompanied by a seizure dog during their daily routine have a lessoned anxiety about having a seizure and therefore actually have less seizures.
To donate online: www.seizuredog4sarah.blogspot.com or contact at seizuredog4sarah@yahoo.com or deposits can be made to Regions Bank for the "benefit of Sarah Eubank".
Please help us in raising the funds for the purchase of a seizure alert dog for her so that she can do the everyday things that we take for granted!
Where: Ray's (under the Pavilion), 45550 FM 1774 (three miles from FM 1488), Plantersville, Texas
When: September 18, 2010 Please join us in a Bike Run, Benefit Auction and festivities.
Bike Run: first bike out at 9:00 a.m., last bike in at 3:00 p.m. Benefit festivities start at 1:00 p.m.
Friday, July 23, 2010
Pre-Benefit Garage Sale
Garage Sale at Los Fuentes in Magnolia, Texas
Friday July 30 9-4 and Saturday July 31 9-4
Accepting garage sale donations.
Please come by and shop around!
Friday July 30 9-4 and Saturday July 31 9-4
Accepting garage sale donations.
Please come by and shop around!
Thursday, July 22, 2010
Wish me luck!
Well, I have printed up all of these flyers and now hopefully tomorrow I can get some donations for the auction! So much work, so little time!
Wednesday, July 21, 2010
Decorative Details from Historic Bedrooms
1929, Louisville Bedding Company.
In very good vintage condition, center pages separated from staple, not torn.
Vintage/Antique crochet, knit, tat books for sale
I have a huge collection of vintage/antique patterns books for sale! They are circa 1920's and up! If interested, message me! All proceeds will go to the seizuredog4sarah fund!
Monday, July 19, 2010
Benefit Flyer
Benefit for Sarah Eubank to raise the funds to purchase a Seizure Alert Dog!
Sarah is a 16 yr old teenager from Magnolia, Texas who attends Magnolia West High School. She has battled the seizures and the stigma that comes with epilepsy since being diagnosed at six years old. In 2003, she had an innovative brain surgery to remove some of the scarring on her right temporal lobe however it did not stop the seizures. For the last several years Sarah has been combating them with seizure medications that do help slow down her seizure activity, but unfortunately give her many side effects like tremors and memory loss.
A person with epilepsy soon learns that their independence is taken away from them with the diagnosis. Sarah always needs someone to accompany her, someone who is trained on how to react to her seizures. She can’t go shopping at the mall with friends, she can’t go to sleep over’s or movies without someone accompanying her. She can’t go to dances for the fear that the strobe lights will cause a seizure. She cannot attend a high school football game, what if she had a seizure in the stands, fell down and injured herself? She can never swim alone for fear of drowning due to her disease; she can't even enjoy a long hot bubble bath without having someone sit with her. The threat of being physically hurt is not the only fear, what if she had a seizure and became disoriented? All of these things keep her from being independent. She is unable to do the things that an average teenage girl wants to do and although she accepts this fact without complaint, she does deserve a chance at a “normal” life. A seizure dog would give her that chance.
Now why a seizure alert dog? This safety companion would always be with her, twenty four hours a day, seven days a week. Because it is a licensed seizure alert/response trained dog it is permitted into schools, churches, movies, malls, etc. so she will have the freedom to live life and go anywhere and everywhere with this dog. He is trained to pull a phone from her pocket and call her parents in the event that a seizure should occur. He is equipped with GPS tracking so that she can always be located, trained in water rescue (because you only drown once), and will be able to respond to her seizures and herd her to a safer sitting or laying down position. Simply put this seizure alert dog can save her life. I would also like to you to take into account that in some cases persons who are accompanied by a seizure dog during their daily routine have a lessoned anxiety about having a seizure and therefore actually have less seizures.
To donate online: www.seizuredog4sarah.blogspot.com or contact at seizuredog4sarah@yahoo.com or deposits can be made to Regions Bank for the "benefit of Sarah Eubank".
Please help us in raising the funds for the purchase of a seizure alert dog for her so that she can do the everyday things that we take for granted!
Where: Ray's (under the Pavilion), 45550 FM 1774 (three miles from FM 1488), Plantersville, Texas
When: September 18, 2010 Please join us in a Bike Run, Benefit Auction and festivities.
Bike Run: first bike out at 9:00 a.m., last bike in at 3:00 p.m. Benefit festivities start at 1:00 p.m.
Heartbreak....
Do you know how hard it is when your a kid and time and time again your own extended family explains why you can't spend the night? "I'm sorry, you having seizures scare me, I just don't want that liability of having you here without your mother".
Why don't they just say "hey, I'm worried your going to have a seizure, how about staying for a few hours and your mom can teach me what to do in case you have a seizure". Family can break your heart more than any stranger can.
Why don't they just say "hey, I'm worried your going to have a seizure, how about staying for a few hours and your mom can teach me what to do in case you have a seizure". Family can break your heart more than any stranger can.
Sunday, July 18, 2010
Garage Sale
We are planning a pre-benefit garage sale. If you would like to donate items to the garage sale, please contact me at seizuredog4sarah@yahoo.com. Thank you for your support!
Wednesday, July 14, 2010
News articles about Sarah from 2008
Sarah went to Washington DC to advocate for persons with epilepsy. You can read the articles, they are listed under "Related links about seizured alert/response dogs and epilepsy".
Tuesday, July 13, 2010
Such a sweet girl!
Sarah is sooo excited about the benefit and the prospect of getting a seizure alert/response dog. Everytime I tell her about a donation made she jumps up and down and says "Thank you! Thank you!I have been praying so much for this!!"
It is so refreshing to see someone so appreciative and deserving!
I would like to thank EVERYONE who has supported us!
It is so refreshing to see someone so appreciative and deserving!
I would like to thank EVERYONE who has supported us!
Sunday, July 11, 2010
Can you imagine being in High School and the teacher sending a classmate with you when you go to the Rest Room during class? How embarrassing!
Instead of a classmate, a seizure alert/response dog would accompany her and if there was a problem the dog would alert that she was having a seizure. (the same thing a classmate would do without the embarrassing babysitter!)
Instead of a classmate, a seizure alert/response dog would accompany her and if there was a problem the dog would alert that she was having a seizure. (the same thing a classmate would do without the embarrassing babysitter!)
Saturday, July 10, 2010
Information about SUDEP (www.chelseahutchinsonfoundation.org)
SUDEP
This is a pneumonic that stands for Sudden Unexpected Death in Epilepsy.
Defined: Sudden unexpected witnessed or unwitnessed, nontraumatic, and nondrowning death in patients with Epilepsy with or without evidence of a seizure and excluding documented Status Epilepticus (seizure lasting longer than 30 minutes) in which post mortem examination (autopsy) does not reveal a toxicological (legal or illegal drug cause) or anatomic cause for death (for example, heart attack, cancer trauma). In other words no other causes other than death following a seizure.
SUDEP has long been recognized as a clinical entity, yet many epilepsy patients as well as medical professionals are unaware of the phenomenon. This leaves bereaved families of SUDEP asking the question “Why weren’t we told?” There is still controversy among professionals caring for people with Epilepsy whether to inform patients or not. Some Doctors advocate avoiding the subject to avoid alarming the patient. Many are willing to discuss mortality issues but feel they have insufficient time in a clinic visit to do so. Many patients are getting their information via the internet and social networking sites. There is a grassroots movement to get the word out at cureepilepsy.org. The position of epilepsy.com is that of open information and disclosure in this area even when the subject is difficult. When people in the public eye die from Epilepsy, there is more media exposure, which may increase anxiety about dying from Epilepsy but it also may help spread awareness about the incidence of SUDEP. Each death from Epilepsy is significant.
A literature search reveals that mortality rates in the epilepsy population are approximately 2 times higher than the general population. There is mounting evidence that the risk of dying is increased in epilepsy patients whose seizures are not controlled by available treatments (Neurology Today). It is clear that there needs to be more research into the pathophysiology of SUDEP. People with Epilepsy can die for several reasons. Experimental evidence points to seizure provoked heart rhythm abnormalities, breathing problems and brain swelling during a seizure as possible cause (Robert S. Fisher, M.D., Ph.D. Editor- in- Chief, epilepsy.com). One recent study, by Jeffery Noebels, MD, PhD and Alice Goldman, MD, PhD, Baylor College of Medicine, Houston, has established one preventable cause of SUDEP, an electrical abnormality in the heart. It is exciting to see new research clarifying what was once only suspected, but there is still much to be discovered.
What can people do to minimize the chances of dying from a seizure? Be aware of risks and take sensible precautions. Control your Epilepsy as best you can by obtaining proper rest and taking all medications as prescribed. Maintain a healthy lifestyle with good nutrition, and exercise. Be aware of safety issues to minimize the risk of injury during seizure. If you have depression or thoughts of suicide seek help National Suicide Prevention Lifeline 1-800-273-8255 (don’t suffer in silence).
Risk Factors for SUDEP according to The Report of the American Epilepsy Foundation Joint Task Force on Sudden unexplained Death in Epilepsy, September 10, 2008 include:
•Uncontrolled seizures (especially generalized tonic-clonic seizures)
•Long epilepsy duration
•Subtherapeutic antiepileptic drug (AED) levels and the number of AEDs used
According to Linda Coughlin Brooks RN BSN CT:
Devices for monitoring heart rate, oxygen saturation, and body movements are available, but reliability of these devices in detecting seizures or in identifying high-risk persons is unproven. Further studies are needed to determine whether these measures have a role in the prevention of SUDEP.
This is a pneumonic that stands for Sudden Unexpected Death in Epilepsy.
Defined: Sudden unexpected witnessed or unwitnessed, nontraumatic, and nondrowning death in patients with Epilepsy with or without evidence of a seizure and excluding documented Status Epilepticus (seizure lasting longer than 30 minutes) in which post mortem examination (autopsy) does not reveal a toxicological (legal or illegal drug cause) or anatomic cause for death (for example, heart attack, cancer trauma). In other words no other causes other than death following a seizure.
SUDEP has long been recognized as a clinical entity, yet many epilepsy patients as well as medical professionals are unaware of the phenomenon. This leaves bereaved families of SUDEP asking the question “Why weren’t we told?” There is still controversy among professionals caring for people with Epilepsy whether to inform patients or not. Some Doctors advocate avoiding the subject to avoid alarming the patient. Many are willing to discuss mortality issues but feel they have insufficient time in a clinic visit to do so. Many patients are getting their information via the internet and social networking sites. There is a grassroots movement to get the word out at cureepilepsy.org. The position of epilepsy.com is that of open information and disclosure in this area even when the subject is difficult. When people in the public eye die from Epilepsy, there is more media exposure, which may increase anxiety about dying from Epilepsy but it also may help spread awareness about the incidence of SUDEP. Each death from Epilepsy is significant.
A literature search reveals that mortality rates in the epilepsy population are approximately 2 times higher than the general population. There is mounting evidence that the risk of dying is increased in epilepsy patients whose seizures are not controlled by available treatments (Neurology Today). It is clear that there needs to be more research into the pathophysiology of SUDEP. People with Epilepsy can die for several reasons. Experimental evidence points to seizure provoked heart rhythm abnormalities, breathing problems and brain swelling during a seizure as possible cause (Robert S. Fisher, M.D., Ph.D. Editor- in- Chief, epilepsy.com). One recent study, by Jeffery Noebels, MD, PhD and Alice Goldman, MD, PhD, Baylor College of Medicine, Houston, has established one preventable cause of SUDEP, an electrical abnormality in the heart. It is exciting to see new research clarifying what was once only suspected, but there is still much to be discovered.
What can people do to minimize the chances of dying from a seizure? Be aware of risks and take sensible precautions. Control your Epilepsy as best you can by obtaining proper rest and taking all medications as prescribed. Maintain a healthy lifestyle with good nutrition, and exercise. Be aware of safety issues to minimize the risk of injury during seizure. If you have depression or thoughts of suicide seek help National Suicide Prevention Lifeline 1-800-273-8255 (don’t suffer in silence).
Risk Factors for SUDEP according to The Report of the American Epilepsy Foundation Joint Task Force on Sudden unexplained Death in Epilepsy, September 10, 2008 include:
•Uncontrolled seizures (especially generalized tonic-clonic seizures)
•Long epilepsy duration
•Subtherapeutic antiepileptic drug (AED) levels and the number of AEDs used
According to Linda Coughlin Brooks RN BSN CT:
Devices for monitoring heart rate, oxygen saturation, and body movements are available, but reliability of these devices in detecting seizures or in identifying high-risk persons is unproven. Further studies are needed to determine whether these measures have a role in the prevention of SUDEP.
Friday, July 9, 2010
Just when you think everything is alright, a seizure sneaks up on you. It seems that she has seizures in the shower more often than anywhere else. We moved her into the master shower because of the glass doors hoping they will hold her up. When she would have a seizure in the other bathroom, she would fall out of the shower tangled up in the curtain and would fall hard and hit her head. Well, good thing is the shower doors did contain her, but it was real hard to open them with her up against them so basically we had to tear them out.
She's fine, just coughing up all the water that she swallowed during the event.
This sucks and we hate it.
The mood around here is not as upbeat as it was just a few minutes ago.
It breaks your heart every single time your child has a seizure.
She's fine, just coughing up all the water that she swallowed during the event.
This sucks and we hate it.
The mood around here is not as upbeat as it was just a few minutes ago.
It breaks your heart every single time your child has a seizure.
I am finally figuring out this blog stuff! We had a good productive day. We have the venue confirmed and now we are working on the bike run! Sept 18th here we come!
We are currently seeking donations for the silent and live auction. If you would like to contact me about donating, please email at seizuredog4sarah@yahoo.com
Thanks!
We are currently seeking donations for the silent and live auction. If you would like to contact me about donating, please email at seizuredog4sarah@yahoo.com
Thanks!
Thursday, July 8, 2010
A day in the life......
This year has been a year of "awakening" for Sarah. I remember one day she came home from school very upset, almost in tears. I asked her what happened and she burst into tears and told me this story.....She was walking down the hall to class and a big group of kids were surrounding something and she automatically thought "Oh, a fight! Who is it!" So she ran up to the group and pushed her way through and a girl was lying on the floor having a grand mal seizure. Sarah had never seen someone have a grand mal seizure before. She started listening to what the other kids were saying about it and she was frightened. She asked the people around her..."isn't someone going to help her?" She wanted to help so bad, but she didn't know what to do. She wanted to crawl into a hole and disappear. She was so disturbed that she didn't want to ever go back to school. I had to listen to her through tears and those questions:"Do I look like that? This is horrible, what do kids say about ME when I have a seizure?"; and as a parent try to figure out what to say to her. What do you say? (I wanted to say, "no, you don't look like that and those kids don't ever say mean things and make fun of you" but we all know that would be a lie). So I do what I always do: I held her tight and reminded her that everything will be ok and that no matter what people love her for who she is.
The next day she decided that she wanted to do something at school to help, so she asked her AP "Since there are posters in the halls about what to do about choking, can we have posters on the wall about what to do in case of seizures?" Let's just say her idea was shot down. Why would they want to bring attention to seizures?
The next day she decided that she wanted to do something at school to help, so she asked her AP "Since there are posters in the halls about what to do about choking, can we have posters on the wall about what to do in case of seizures?" Let's just say her idea was shot down. Why would they want to bring attention to seizures?
**this information is no longer accurate due to SADL liquidating his business due to health reasons** I am currently looking for a new trainer
Information about the Seizure Alert Dog
The cost of the seizure alert dog is $18,000. The dog is 2 1/2 year old West German Show Line German Shepherd that was bred for intelligence and temperament. The dog is currently in service dog obedience training in New York .The trainers will assist us at placing the dog into her school and on the school bus. This dog will be a part of her daily routine.
The dog will be trained to call for emergency assistance using a pre programmed cell phone and to get her to a safe place in the event of a seizure. (like onto the floor so she doesn't hit her head), the dog will be trained to block or guide her if she is disoriented after a seizure ( so she doesn't walk into traffic) and the dog will be seizure response water rescue trained.
Upon delivery Jonny will be licensed as a service animal in NY. In Texas you will have to comply with the ADA. Texas does not have service animal licensing.
The cost of the seizure alert dog is $18,000. The dog is 2 1/2 year old West German Show Line German Shepherd that was bred for intelligence and temperament. The dog is currently in service dog obedience training in New York .The trainers will assist us at placing the dog into her school and on the school bus. This dog will be a part of her daily routine.
The dog will be trained to call for emergency assistance using a pre programmed cell phone and to get her to a safe place in the event of a seizure. (like onto the floor so she doesn't hit her head), the dog will be trained to block or guide her if she is disoriented after a seizure ( so she doesn't walk into traffic) and the dog will be seizure response water rescue trained.
Upon delivery Jonny will be licensed as a service animal in NY. In Texas you will have to comply with the ADA. Texas does not have service animal licensing.
July 8, 2010
A few days ago, we had a routine visit with the neuro and he recommends surgery again (first left temporal resection was in 2003). I scheduled the EEG monitoring, which means a week in the hospital and taking her off her meds so she will have seizures so they can map them. The only thing I hate about this is, I don't want her off her meds! Last time we did this she seized for days...non stop. It was horrible to say the least. Sarah was upset about the doctors decision and didn't want to do it. Of course, they scheduled it the first week of school (which finally she likes school and doesn't want to miss!) So after a long weekend of praying and thinking about it, we decided not to go ahead with the monitoring or the surgery (I canceled the appt). No one around here has a good feeling about it, so why go forward with it.
Well funny thing, I was surfing around on facebook and found Seizure Alert Dogs for Life. I called Jon, the owner. All I can say is what an incredible person he is for training these beautiful German Shepherds!
I don't know how all this came together in just a few days, but I strongly feel this is the direction God is pointing us toward.
The hard part now is the money! So now as quick as I can, I am going to plan a benefit to try and raise the money to get her this dog.
This dog means independence for Sarah. This dog means that I will always have an extra pair of eyes on her, to keep her safe. She could actually go shopping without a chaperone, she would be able to things that normal teens do. It would give her the confidence to venture out, right now she doesn't want to go to school functions because she's afraid of having a seizure and no one will be around to help her!
So please if anyone is listening out there, please please please help us get this seizure alert dog for her!
Well funny thing, I was surfing around on facebook and found Seizure Alert Dogs for Life. I called Jon, the owner. All I can say is what an incredible person he is for training these beautiful German Shepherds!
I don't know how all this came together in just a few days, but I strongly feel this is the direction God is pointing us toward.
The hard part now is the money! So now as quick as I can, I am going to plan a benefit to try and raise the money to get her this dog.
This dog means independence for Sarah. This dog means that I will always have an extra pair of eyes on her, to keep her safe. She could actually go shopping without a chaperone, she would be able to things that normal teens do. It would give her the confidence to venture out, right now she doesn't want to go to school functions because she's afraid of having a seizure and no one will be around to help her!
So please if anyone is listening out there, please please please help us get this seizure alert dog for her!
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