Who Is Affected?

We want our readers to know that epilepsy doesn't just affect the person who has the seizures.  It affects other family members, friends, employers etc.  For this reason, we asked my Aunt Jen to write a post from her perspective on my diagnosis of epilepsy.  Aunt Jen was a HUGE support to my mom and dad during the early days of my diagnosis...

 

I was asked to write a post about how epilepsy affects the extended family. Kait is my niece. I was pregnant at the same time as Kim and helped to take care of Kait the first few months of her life until I had my own baby. Kait spent a good part of her early years along side her cousins. We homeschooled as well, lived in the same town and the kids all grew close. My sons love her beyond her being their cousin, she is loved like a sister. The day Kait had her first seizure we were all dressed up getting ready to head north to watch one of my other niece's get married. Text messages and panicked phone calls and the decision to send my husband and sons north to be there for the wedding and me flying down the highway to get to the hospital to be with Kim, Ken and Kait, knowing the rest of her family were already 2 hours away for the wedding.

 

When Kait's diagnosis was given I think we all had a bit of a jolt. There is no known family history and I can't say it's ever been something that really crossed my mind. To learn that it can come on at any age was a shock. There was no dipping our toes in this pool, we were pushed. Kim and Ken were great about advocating for Kait and getting as many answers as they could. Learning about what epilepsy is, how it's treated, and educating family as they learned themselves. I don't think the boys were as nervous as I was about Kait's first visit post-diagnosis. Kids are so much more accepting and ready to roll with things. Kim and I talked, and I shared with the boys what they should do if Kait had a seizure when alone with them in a room, or outside playing. As months went by and we learned more about the kinds of seizures Kait was having (you mean there's more then one kind of seizure?) I found that for me, for my sons and husband this wasn't something that we could just go, "oh she has epilepsy" and just let it go. I asked questions, read, lots of facebook post sharing, fundraisers and  event walks. I won't ever define Kait as my epileptic niece. I have 2 nieces (a wonderful new addition to our family and as it so happens also Kim's patient) that have epilepsy. This doesn't define them. Kait has worked hard to make sure it doesn't restrict her. When she comes to the house or we travel down there, it's in the back of our minds that she could have a seizure, but we have been educated in how we can respond . We welcome Kait AND her ever present (albeit hairy) partner Jack.

 

As Kim and Ken walked this road with their daughter, they had and continue to have a whole gaggle of family and friends following along. Kait is their daughter, but they certainly aren't alone. Epilepsy didn't just happen in their home. It follows them everywhere they go.

We would like to also let our readers know, that no matter who you are or where you live, you are NOT alone...

Little Angels Service Dogs

The following blog post is from Katie Gonzalez, director of Little Angels Service Dogs.  Please note, I do not know Katie personally, but I have heard some wonderful things about her from her clients. Katie has a few books published on training service dogs that you can check out on her website: Little Angels Service Dogs

If you are looking for a service dog company, I encourage you to do your research into different companies.  Ask for references, talk to past clients, ask about training methods, ask around on social media sites, and check out the BBB for their rating.

Again, I do not personally know Ms. Gonzalez, but I do know a few of her clients, across the US, who are absolutely thrilled with the seizure alert/response dog they have recieved through Little Angels Service Dogs.

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Can dogs be trained to alert to seizures in advance? YES! We are very aware that most of what is said about seizure alert dogs opposes this idea - but we strongly disagree. Our training methods vary greatly from what is traditionally taught. We will not hide our secret, because this knowledge is not something that should be hidden. When other schools adopt our methods and begin training their dogs with the same techniques more people will be helped - and that is our greatest goal! With any amount of research you will have read that only certain dogs can alert to seizures - that it is something they do naturally - and they cannot be taught to perform this miracle. Let us explain our difference in thought; The dogs who alert naturally to seizures are the dogs that care; these dogs are distressed that their beloved handler is having a seizure. Why do they care you ask? Because they are naturally anxious dogs by breed and personality. Many of these dogs are displaying outward signs from their distress of knowing their handler is about to have a seizure, such as barking, whining, pacing, clinging to their handler, etc., but many other dogs are alerting in their own way by yawning, licking their paws, or hiding in another room, of which are all also signs of distress from a dog - it is just that in many of these cases the handler would never put two and two together; that their dog is licking its paws 20 minutes before every seizure for example. But in the hopes that the dog will naturally alert in a visible way trainers will hand-pick dogs who are naturally anxious, hoping that the dog will inadvertently alert the owner before the seizure occurs. This is where we go further. We do not believe that only anxious dogs can sense seizures - we believe that ALL dogs can sense them - but that not all of them care. So how do we get them to care? We play what is called 'the alert game' with our dogs. When we say 'Alert' the dog is trained to paw at our leg to get a tasty treat that is reserved only for this amazingly fun game. The dog starts to LIVE for this game! They can hardly wait to play it. Then here comes the miracle ... When the disabled recipient comes to San Diego for Handler Training we show them how to play the alert game, and we make certain the dog loves playing it with their new handler.... Then we cut off the game. We instruct the disabled recipient to only play the game right after they are recovering from a seizure. Pretty soon the dog realizes that the only time they get to play this amazing game is when their handler has a seizure. The dog senses the chemical changes in their handler's body - they know a seizure is about to happen - they know the game is about to happen - and they come over and paw at their handler's leg to play the game. That's it! The dog is saying, "Hey, it's time to play the game!" The handler knows, "My dog says I'm about to have a seizure." All we need is a dog who pays attention to their surroundings, and a dog who likes food. We don't have to guess anymore about what dog is anxious enough, and how might the dog inadvertently alert to the seizures, and will the dog ever put two and two together. This does not mean that everyone can have a dog that alerts to their seizures in advance.If someone has seizure activity in their brain, but shows no outward signs of a seizure to the point that they don't notice their own seizure activity, then they cannot communicate to the dog in a way that would be consistent. When we are playing the alert game with the dog we are telling them that they are supposed to play it during seizure activity. But if the person has seizure activity, exposing the dog to the stimulus of the seizure activity, but then no alert game is played, the dog will not understand because it is not consistent. Many people have smaller seizures that they don't always recognize. This can also lead to confusion in the dog. It is obviously ideal that each person have a dog that can alert to their seizures in advance, but in some cases it is likely that we won't be able to communicate to the dog effectively based on seizure activity. Seizure AssistanceOur dogs are also trained to assist after a seizure. They are trained to locate and retrieve a phone for their handler to call for help if needed. They are also trained to help brace or balance their handler for stability after a seizure, or to lay on top of their handler during a seizure to prevent injury or a flight response. In certain cases recipients will ask that the dog be trained to retrieve a family member in another room. We can also train a dog to dial a specially designed Assistance Dog Telephone that has a large speed-dial button made for a dog's paw. These phones can be programmed with a pre-recorded message that will alert others that you are having a medical emergency and ask them to respond. This way, even if the person were unconscious, the dog could still get outside help. Seizure Assistance and Alert Dogs for Children and InfantsBecause of our alert game we can train the dog to alert a parent that their child is going to have a seizure. No more worrying! It is such a relief for parents to know when their child will have a seizure. The Facts* Dogs usually alert to seizures in consistent time intervals - for example, one dog will consistently alert 15 seconds in advance, while another dog alerts consistently 50 minutes in advance. There have not been enough case studies to determine if these time frames are based on the specific dog, or based on the person. * No trainer should ever guarantee a dog's level of assistance because all dogs are different. However, our number one goal is to get you a dog that is alerting to your seizures in advance. If the dog does not do that, we will exchange that dog for another, at no cost for the dog. After all, if the dog is not assisting you, then what is the point?

Meet... Mariah:)

 

Meet Miss Mariah.  My beautiful daughter had her first seizure march 4, 2004; that day had changed my whole family’s life around... Our days at of reading books and coloring and enjoying everyday life became very hard. We were living in the hospital trying to find a medicine to help control her seizures, test after test. We had no explanation to why she had developed epilepsy!

The day came that is a mothers worst nightmare, the doctor walked in and said Mariah had Lennox Gastaut syndrome!!(Is a severe form of epilepsy.) Seizures usually begin before 4 years of age. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods. Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning or information processing, along with developmental delays, and behavioral disturbances. Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In 30-35 percent of cases, no cause can be found.) My heart sank, the tears rolled down my face because I already knew what it meant!!! It took me a few minutes until I could talk but I stood up and said "what do I have to do" The doctor said "we are going on the ketogentic diet today!" I am know weighing all her food and making sure I have the right amount because if I didn't it would have threw the diet out the window, it was tough I had a child that could not have birthday cake at her friends birthday, it was very hard to explain that to a 4 year old. The day came where the seizure where back as strong as ever, every time I turned around she was on the ground seizing .. I couldn't keep up with the seizures... She was having 150 a day...

We were back in the hospital as my parents and I was begging for answers, just something to let us know anything at this point, still no answers! The surgeon had came in to talk to us and said "this is your best option is to have brain surgery, the doctor wanted to do 3/4 corpus colostomy to help control the seizures. I had three days to prepare for a brain surgery for MY ANGEL, I cried, sleepless nights, everything you could image I was going through... She did great after surgery was up walking, talking, I was hoping this was what we needed to do to get rid of the seizures!! NO SUCK LUCK!! Mariah was seizure free for 4 days. We had fewer seizures in everyday life but no control... It was six months later the surgeon came into the hospital room again and wanted to complete the corpus colostomy all the way and put a VNS in to help control better!! It took me a couple of days to decide if this was our best choice because her left and right brain cannot communicate any more... We decided to go through with it... It took her a little longer to come back around but she did!! Mariah was seizure free for a little longer this time... the seizures returned!! Now what?? We have tried every medicine and medicine from Canada...

The end of February Mariah got really toxic from a medicine, she was VERY sick!! The doctors would not take her off the medicine that was causing all of this sickness...I begged, I cried, I felt helpless!! I finally put it in GODS HANDS I could not live everyday like this!! The next day the doctors said it is time to go somewhere else; we are sending you to Memphis Tennessee... After six long weeks of the battle the doctors took her off of this awful medicine!!

We are now facing the fact that Mariah will not eat or drink anything. I took her to the doctor on Wednesday of course back in the hospital we went because of dehydration... The doctor decided it is time for a g-tube to get nutrient into her system, but she was to malnourished to go into surgery. The doctor put a PICC line in and is getting TPN... She is scheduled for surgery Tuesday!
Mariah now has a GJ tube in placed..She is getting all nutrients through her J tube!!
As Mariah mommy she is "MY HERO" she is a fighter no matter what is thrown her way!!

A Mother's Perspective...



Since this month is Epilepsy Awareness Month, I'd thought I'd let some of our friends share their story about how epilepsy has impacted their lives.  I was going to write the first blog post for this month, but have since decided that it's better to put others first...

Our first writer is Heather, and this is what she has to say:

In the fall of 2009, Travis, our boys, Trav's parents and I were sitting around our living room. Some of us were playing Yatzee on the coffee table. Dakota was standing between the coffee table and the wall. He was wearing a blue shirt and shorts. His hair was still a mess from the night before. It was a Sunday. I mention all of this because the moment is so vividly implanted in my brain. Dakota did the same thing he'd been doing for MONTHS. A thing that was REALLY aggravating for a parent. He ignored us. His dad was getting on his case for being inappropriate during the game and he just IGNORED him. Like, literally turned his head and acted as though he couldn't see him, couldn't hear him. This was the third time he'd done it just that day. In fact, it had become a rather constant event. This time was different because my mother in law, Vic, saw him do it. As Travis reached out to turn Kody's head back toward him, my mother-in-law looked at my father-in-law and said "I think he's having a seizure". She then asked me how often he did that and I responded by saying probably 50 times a day or more. She told me again that she thought he was having a petit mal seizure. I reassured her that he was just being naughty.

After they left, I Googled it. My world shattered. I could do nothing but sit and cry. After reading about absence seizures (or "petit mal" seizures) there was no doubt in my mind that was what was happening to my baby. How in the WORLD could I have let this go on for months and months and NEVER give it a second thought. Monday morning I called our family doctor, who saw him Monday afternoon. It took no more than 10 minutes for Dr. Matzke to decide that we needed to see a neurologist immediately. On Wednesday morning, Trav and I sat in a tiny room as our son was hooked up to wires, laid on a table, and made to have seizure after seizure after seizure. He had so many seizures during that first EEG that I had to leave the room because I was sobbing uncontrollably and begging the tech to stop. By Wednesday afternoon, my baby boy was diagnosed with Epilepsy.

So many people ask me how we can handle dealing with a "sick" kid. I always wondered, when my kids were younger than they are now, how people dealt with kids that have any type of medical, physical, or emotional issues. I always felt so blessed to have very healthy babies. Sure we had flu, colds, respitory issues, etc but nothing that required all of our attention, all of the time. I couldn't ever imagine having to deal with doctors and nurses constantly; nor could I imagine not being able to take away my kids' pain like "those parents" had to deal with. I really did wonder how parents of "sick" kids found the strength they needed to be there for their children. They were awe inspiring to me.

Now, let's get this straight. Kody is not "sick". His seizures are what they are and we deal with them. I had to learn immediately that my curiosities about those "other" parents were somewhat unwarranted. Because, when you have a child get a serious diagnosis, you deal with it. It isn't about you, or your feelings, or what you can or cannot do. You just do. That's it! Am I the strong one here? HECK NO! I still cry almost EVERY time I say the word "Epilepsy". The very thought of the acronym SUDEP sends an unimaginable wave of panic through me. Kody is the strong one. He lives his life. He doesn't have a "disability". To him, it's a situation that we deal with. He takes meds, he gets out of school to go to Denver, and he gets to eat at Famous Dave’s. He's aware that he cannot do the things the other kids do in the same way that they do them, but he CAN STILL do the things other kids do!

Am I scared? Yes. I am so unbelievably scared. I don't know how else to describe what I feel other than fear. It doesn't control me. It definitely doesn't control this situation. But this is my baby. Of course I'm scared. Tears stream as I tell you about my son and his life. They're there not only because of what we've gone through up to this point with Kody, but also because of those who have lost their battle. They're there because people don't understand that he's not ok because he "doesn't have real seizures". Kody has absence seizures and complex partial seizures. Note that they are both called SEIZURES. I don't think anyone has any idea the impact that the statement "Well, at least he doesn't have grand mal seizures" has on a 10-year-old boy who KNOWS that his seizures are just as serious, just as scary, and just as damaging as any other type of seizure. Please educate yourselves. I am raising three boys that can tell you all about the different types of seizures and appropriate responses if you see someone having a seizure. There is NO REASON the world can't know those things, too. The information is out there. The facts are out there.

So, there it is. The shortest version I could give you on my perspective. Thanks for taking a glimpse inside our world. Don't feel bad for Kody, or for any of us. Do right by him, and countless others, by getting involved, by educating yourself so that you can educate others, and by raising awareness. Knowledge is power.

Love,

H.