Sunday, March 28, 2010

The Timeline

My parents tried a modified version of the ketogenic diet in the 80's without it being very successful. When I was a freshman in college, my neurologist suggested that I try it again and told me to go and get Dr Atkin's book. I followed everything to the letter. Even as a 18 year old, away from home. I wanted it to work SO bad. I ended up gaining over 30 pounds in 6 weeks and my seizures got worse. I have the stretch marks to prove it! I only weighed 98 lbs when I graduated from high school so my body really rejected putting on that much weight, that fast. My parents and I decided to abandon the diet after a few months. I am sure that my experience would have been better if I had a real medical team, had started the diet in the hospital and wasn't just shooting from the hip, reading from a book.

Therefore, I was leery of the diet as treatment for my son.

After more information (knowledge is power) and a lot of thought, we have decided it's the next step. BUT...we have to wait. The dietitian that knows the most about it is currently on maternity leave. We have to wait for her to come back to work. At this time, we are looking at being admitted on the week of April 26th. How is it that the last few years I have been spending my birthday in places like hospitals and airports? Both Brian and I just need to celebrate at the six month mark!

We are not positive that this is the true date, but it's all we have for now. Hopefully, something will happen and we can go in and start sooner.

Saturday, March 27, 2010

Utah Keto Kids

We spent a wonderful morning with three other families who have a child on the ketogenic diet. All boys, all under 3 years old, all of them the only-child. It was awesome! There were weird moments where I felt like I was working again. I had to keep reminding myself that I was there as a parent. I guess it's just hard to shut that part of my brain off. :) All of these people are amazing. Every story is different, but has some of the same themes. I am sure that we are going to be great friends. Crisis brings people together, and let's be honest, we are all in crisis right now. I have known some of their stories from blogs, but it was so great to finally meet everyone in person. We are going to keep getting together because we can all use the support and great advice that we can give to each other about this and that relating to the diet and seizures.

There were some other people there as well, what warriors! I teared up when one person told me that she was not allowed to adopt. She was deemed an unfit mother because she had epilepsy. She was educated, her seizures were under control and she loved children. I need to remind myself every day that we have come far. There are still miles to go, but at least there is more knowledge and acceptance than there was 30, 20 and even 10 years ago.

Here is a picture of our new buddies.Notice none of the boys are looking!

I am so glad that we got the opportunity to do this. It would have never been possible without the Internet. What a resource! To anyone that comes across this and wants to participate, even if your child is not on the diet, leave a comment with your information or you can find out more about our group on the Epilepsy Association of Utah's website.

Friday, March 26, 2010

Wear Purple

Purple Day is a day that is international to recognize and promote epilepsy awareness. March 26, Purple Day was started in 2008 by a nine year-old girl from Canada with epilepsy. You can read more about her here.

It's a grassroots effort dedicated to promoting epilepsy awareness. Epilepsy affects over 50 million people worldwide. 3 million of those are in the United States. That's more than Multiple Sclerosis, Muscular Dystrophy, Cerebral Palsy and Parkinson's Disease combined! I remember when I heard that statistic for the first time, I was shocked.

I have my little purple ribbon pin from the Epilepsy Association of Utah on my purple trench coat. It's just a little reminder to me that as much as we can talk about it, the more comfortable people become with the subject. There is lack of information and so many misconceptions about epilepsy. It lacks serious funding due to its poor awareness. So many other disabilities and struggles have incredible fund raisers, foundations and backing from legislators. Hopefully, this will change. We need to spread the word, like Cassidy, she's a warrior. Wear purple!

Wednesday, March 24, 2010


It is amazing what fear can do to a person. It has caused some to have super-human strength and lift cars, or fight cancer. It has caused others to wither and withdraw. I think we have all learned something from fear.

Like the example that I could not go out in the dark on our rural farm to take the garbage out, even when I was a teenager, without major anxiety and running involved. I was afraid and certain that the juvenile delinquents from the nearby Ranch/detention center were hiding in our large pine trees, waiting to attack me. How funny is it that I ended up working with kids that were even worse off behaviorally than the ones I was afraid of for all of those years? We all have little things that end up being big things, because of fear in some way or another. I am no longer afraid that some teenage boy is going to attack me. I have enough self-defense skills from my jobs to be certain that I can restrain them. Things that keep me nervous or awake at night now are things that are totally different than the things that did fifteen years ago. Some are the same.

Like walking into a crowded store by myself, searching for the exit, and wondering if I have a seizure, who will help me? That particular anxiety ebbs and flows. Exercise shouldn't be scary. It sure is for me. Wonder why I never exercise? It's mainly due to fear. Fear that my body won't (and has not in the past) handle it well. I won't go to the gym without my sister or someone I know. So, congratulations 24 Hour have totally been making money off of me!!!

I think I have had a healthy dose of fear this weekend.

Cole had a long seizure on Saturday that was a combination of three different kinds of seizures. This one has really affected him. Thankfully, he stopped seizing before the paramedics arrived so we did not have to go to the hospital. However, he has been really delayed with his speech and language skills. He hardly spoke for the remainder of Saturday and struggled on Sunday. I would ask him a question and he would try to get the answer out and it would just present as babble. Each day has been better, but he is still not talking as much and has forgotten quite a few things he knew before. He can't find things when I ask him and say words that I know he knows how to say. His speech therapist told me that she could really tell a difference from last week to this week, so I know it is not all in my head. It has really scared me.

Let's just say I haven't been sleeping much. Add that to Brian being gone almost all of last week, and I have only been averaging a couple of hours of sleep a night for the last 10 days. Not good for me. Not good for Cole. Unfortunately, I can not take any kind of medication to help aid the process, or I will have a seizure. Nothing is worth that. So I just get to be alone with my thoughts and have even crazier dreams than normal (and my normal is pretty, freaking crazy). Lots of prayer, lots of thinking about positive things. I am really ready to go back to Hawaii it seems, because that is what I keep thinking about in the night. I have planned one awesome trip! Too bad we can't go anywhere for an undetermined amount of time :)

Everyone has fear and anxiety in one way or another. It is a natural instinct, designed to protect us. Why don't we go down a dark alley that has a person looming at the end? Good fear. Protective anxiety. My anxiety has been better over the last couple of months. I do not have nightmares where I wake up screaming or jump out of my bed anymore. I know that fear is real and that we have to acknowledge it. Sometimes we as a society are taught that it is bad to be afraid, that we should be superhuman. We suppress uncomfortable feelings and it ends up affecting us in the long run. Sometimes it comes out in our dreams. I think that as long as it is controlled, you can learn from fear. It takes looking inside of yourself and getting to the root of why you are afraid.

I am afraid for Cole's safety. I am afraid that Cole might have Dravet Syndrome. This new diet scares me. I am afraid that my body might give out. I am afraid of a lot of things, but I also balance that out with what I am glad for, or have no uncertainty about. I am certain that Brian loves Cole and I. I am certain that hot baths can help anyone :) I am certain that I was pre-destined to be Cole's mother and that I need him as much as he needs me. I am certain that with faith, everything will turn out the way it is supposed to. I am certain that I am supposed to learn things from my experiences and from others. This is the main reason for this blog. To express myself, but also teach others. It takes skills and positive thinking to get through something scary. For me; lots of positive re-enforcement and visualization. If I wake up in the middle of the night with my heart racing, I turn to my clock and its glow reminds me that I am in my bed, safe and sound.

It's okay to be afraid. Just don't let it consume you. If it is affecting your life to the point that it interrupts your daily routines, talk to someone about it. There are probably things you can do to help, you just don't know about it.

Sunday, March 21, 2010

Family Links

I am so glad that Brian and I got to attend the Family Links conference! It is a conference for families, caregivers and professionals who work with or have someone that they care about who has a disability. Lisa, who has her own set of challenges, has been my friend since high school. She told me that we really needed to go this year. She and her husband were planning on attending with us, but as things happen when you have a kid with special needs, something came up and they were not able to make it. It is put on by the Utah Parent Center every year. Their link is on my sidebar.

The speakers were great. The food was AWESOME. The price was amazing, and they have scholarships for people that can't even afford to pay the menial cost. It was a real "cup filler" for us. Sometimes it is really hard to accept that two out of three people in our family have a disability. Cole and I look and act normal the majority of the time. It is a hard concept to wrap your head around when everything looks just fine. Sometimes people close to us even have a hard time saying, "disability, epilepsy, syndrome, disorder" and other hard words. We just have seizures...period. The opposite is true because those seizures affect our life to the point that it is a disability.

I am very high functioning at this point in my life. Cole not so much. I heard something really powerful at the conference. Someone said that disability is something that everyone has to go through. We're all going to die. Most of us will age. Sometimes we break things, have surgery, become ill and can't do everything for ourselves. It is something that everyone will have to experience, just not at the level of people who have an actual diagnosis.

We learned a lot about keeping our relationships intact, which is something that is so hard to do when you have this problem (Epilepsy, Down Syndrome, whatever) in the forefront of your mind. Friendships, spouse, and familial relationships suffer. We even got a free book from the keynote speaker because we registered early. Yeah for free stuff! We also learned about some great programs in our state that we never would have had a chance to otherwise. We talked about legislation for the future and the reality that programs like DSPD are so under-funded that the only way things are going to get better is if the parents start kicking and screaming.

We learned a lot about parenting and were able to mingle with others that 'get it'. The snow cones, Cafe Rio, Maggie Moos and other stuff didn't hurt :) I am so glad that even though we had to round up three baby-sitters and move our other schedules around...we went. Both of my sisters that live out-of-state are here right now, so it was hard to not spend time with them. It was important for Brian and I to take a 'time out' so to speak and we really talked a lot about the next couple of months and how we are going to try and prepare for the struggle that lays ahead.

We unfortunately came home to reality. Cole had a visit from his friends the paramedics less than an hour after we returned home. We didn't have to go to the hospital, but he's still not doing so well today. I'm just glad it happened after we got home. Who knows where we will be living next year, but I loved the conference so much that I might just come back for it.

Saturday, March 20, 2010

Life As A Contact Sport

This is a re-post from our family blog.

After months of multiple falls and injuries like thisand this where we had to get his forehead glued shutand theseand others.

We got a helmet. We call it the "hat".Cole has been pretty good about wearing it, but it doesn't protect from all falls. I am glad that it has cut down on the constant massive green spot on his forehead.

How about this one?You can't really tell, but the fat lip was received in nursery after a drop seizure and the double bruises on the forehead are from one fall without the helmet and one fall with, when it moved to the side.

Thursday, March 18, 2010

A Change of Heart

They have tested me for diabetes, parasites, cancer, and a whole bunch of other things, but everything comes back inconclusive or normal. No one ever tested my heart. You can imagine my surprise when a neurologist at Primary Childrens heard my story while my son was in the PICU and asked if I had ever had an ECHO. After all of these years, no one had considered my heart. He suggested a syndrome that disguises itself as epilepsy that I might have, Long QT Syndrome. I turned out that I did not have this particular syndrome but after some pushing and a lot of tests, they discovered I had a very large Patent Foramen Ovale (PFO). Everyone is born with one, but mine did not close and stretched as I grew. This large hole in my heart that has been closed with a titanium device. The cardiologists I saw thought I was insane because I wanted all of these tests without symptoms, but I am glad that I kept being persistent. Sometimes the squeaky wheel gets the grease. My cardiologist who performed the surgery (I have seen three) told me that he couldn't believe that I haven't had a full stroke, especially during pregnancy. I had a TIA (mini-stroke) that I am aware of and possibly others, but have not had any other major episodes since surgery. When they told me about the PFO it was another "Maybe this is the reason" moment. Unfortunately, I have had a seizure since my surgery and still have severe headaches, but stroke prevention was the main reason for the closure. My heart has inflammation around it so I occasionally have chest pain and my heart races from time to time. This has not caused me to seize.

I would suggest for anyone that has severe headaches or seizures, to get their heart checked. There may be an underlying problem that can not be heard with a stethescope.

Wednesday, March 17, 2010

What We Have Tried With Cole

Cole started by taking Phenobarbitol after his second seizure and hospitalization. It is one of the only choices for very small children. We stayed with that drug, on multiple doses, for a year. As parents, we did not like the side affects and he continued to have seizures. We started to taper with the consent of our neurologist to see if we could get to a point where Cole was more alert. During the very slow taper, Cole started to develop absence and drop seizures. We changed to Keppra in September of 2009. He was finally old enough to try it and I had been on Keppra longer than any other drug in my adult life. He is now on 4mL twice daily. We just increased his dose starting in February.

We were worried about Cole's development because he had not started using words. He just babbled a lot. We got his hearing tested and found that he has perfect hearing.(he can hear an airplane from inside the house) We had a speech therapist evaluate him and he is now enrolled in the Early Intervention Program with the school district. He has a Speech Therapist and a Teacher that each come to the house at least twice a month to work with him. He has made great progress since he started this treatment in January 2010. It is a great program at low cost to the parents. Some people even qualify to get these services for free. You can get information here if you live in Salt Lake County.

We tried an alternative therapy at the University of Utah hospital called neurofeedback. Insurance does not cover it and the treatment is very expensive. I knew that if medication didn't work for me, it was most likely not going to work for Cole. After 5 months of going to the hospital at least twice a week for neurofeedback, we stopped treatment. It was not working for Cole and was really expensive. This treatment has not been used a lot with small children who have seizures, but has been very successful with other ailments.

We tried homeopathic treatment for a short period of time with Cole. We did not see any results and due to having so many treatments at once, we discontinued it.

Cole's most recent EEG in February 2010 has shown more abnormalities and that his absence seizures are increasing. Cole is on the maximum dose of Keppra for a child his age. He does not have a lot of major side effects, but continues to have seizures. Brian and I feel that it has lowered his seizure threshold because he went for many months without a grand mal after being on Keppra. We have decided that our next step is to put Cole on the ketogenic diet. His neurologist concurs and has put multiple kids on this diet with good results. He is on a waiting list and will probably go into Primary for 4 days to start this diet sometime in April. It is going to take a huge commitment to do this, but anything is worth the possibility of not having seizures.

Tuesday, March 16, 2010

Things I have Tried

The journey has been long. At times I feel like I have tried everything under the sun and then some other-worldly things. I have been on every anti-convulsant out there. Keppra, Topamax, Dilantin, Tegretol, Phenobarbitol, Meberal, Depakote, Mycelin, Tranxene, Lamictal, Diastat, combinations of these and probably some others that are not on record. I now know with recent research that if someone is not controlled with medication after trying two or three drugs, the likelihood of ever achieving control with medication is not very high. I even tried birth control for a time to help control seizures when a physician suggested I might have catamenial epilepsy.

There have been plenty of alternative therapies that I have tried also. Chiropractic, acupuncture, homeopathic, massage, the modified ketogenic diet (without a team...that was awful), nature paths, and others . My parents took me off of sugar, my mom even tried to make a sugar-free birthday cake in the 80's (it didn't turn out so well). I saw some guy that had a shop above a garage who put copper plates on my head and rubbed his fingers around on a machine that he made me swear to never tell the government that he had. He made me drink "living water" and alove vera. I hung a metal weight from my head while I was laying down, to stretch my spine and take pressure off of my nervous system. I have had a chiropractor place me on a special bed that made waves in water to help my back. Small machines that sent electricity to my nerves telling them, "Don't seize! Don't seize!" There was a time that I was taking 52 pills a day in college. A combination of natural medicines, anti-convulsants and vitamins. I can swallow 19 pills at once :) These and other treatments were all going to be "the one" that made everything change. We tried everything, just hoping that this would be the treatment that helped.

During all of this, every physician I saw could not give a reason for my seizures. All of my tests-EEG, MRI, CT came back normal. Someone told me once that my epilepsy was probably due to birth trauma since I had to be delivered with assistance of a vacuum and I have absolutely no history of seizures on both sides of my family. I spent a week at the University of Utah when I was 23 for an intensive video EEG with hundreds of electrodes. After praying for a seizure (you can't imagine how weird that was), I finally had one after a week of not sleeping and just eating french fries and sugar. My mom went to push the button to mark the beginning and the entire computer system crashed. Lovely! The only thing the doctor could tell me was that my whole brain is involved and surgery was not an option. They suggested the Vagus Nerve Stimulator, but the side effects were not worth the risk of only "possible" control.

The brain is such a mystery. No one really can say that they understand it. After working professionally with physicians for years, I understand why they say, "I PRACTICE medicine". The human body is so complex that only God can comprehend everything about it. They really are just practicing. I had a lot of anger for many years towards the medical community, because they couldn't "fix" me. They weren't trying hard enough, they didn't care, etc. I have let go of those feelings and it sure makes my life easier. After all of the specialists I have seen, and after working with physicians professionally, I know that they are just people. SMART people. There are some that just have a horrible bedside manner, but they work hard. There are others that are empathetic, but you don't feel they are trying to push the envelope. My advice is when you feel comfortable with a physician-you're lucky. Take it and run. You might have to try three or more to find the right fit. I am so grateful that my sons neurologist is someone that I connect with and listens to me as a parent and someone that has epilepsy. I wish that my parents would have had someone like him when I was younger and they were going through some of the same struggles.

At this time I am not on any medication and have learned what triggers my seizures as an adult. STRESS. Life is definitely not stress free, but having epilepsy no longer plagues my life, it empowers me to be able to take care of my son and hopefully reach out to others who are struggling.

Cole's Story

Cole was six months old and had just been diagnosed with an ear infection earlier that day at his pediatrician's office. I brought him home, gave the first dose of antibiotics and settled into our routine of comfort. Rocking. I swear I spent eight months in that glider! He had finally fallen asleep after being exhausted from staying up the previous night in pain. I was exhausted too. Brian had just gotten home from work and had run out to the store to grab something. I felt Cole's right arm stiffen and then it started to twitch, then his whole right side. Immediately I got scared and knew what was happening, having had seizures for my entire life and working in a hospital for my profession. My son was having a grand mal (tonic clonic) seizure! I looked at the clock, laid him on his side and frantically called 911. I was so glad that the ambulance was just minutes away from our home, totally the opposite of what my parents had to go through whenever I was seizing. The nearest adequate hospital was 45 minutes away from our rural farm. I even vented to the poor operator, "I have no idea how my parents did this!" She told me that I was being extremely calm and I mentioned my profession as a medical social worker on a high-risk long-term unit. I saw this kind of thing all of the time at work, but this was my baby.

Brian came home while I was on the phone and waiting for the ambulance to arrive. He had only experienced his first seizure 6 months previously, 3 minutes after our son was born. He had no idea what to do, so I just handed him the phone and coached him through the few minutes until the paramedics arrived. By this time, Cole's entire body was involved. The men stormed our tiny living room that was full of furniture and baby paraphernalia. They administered this great drug, Intranasal Versed, my parents did not have anything like it and now we use it all of the time! Cole's seizure stopped 13 minutes after it started and right before we got to Primary Children's Hospital. This begins Cole's story. We got the usual first seizure talk at the Emergency Room. "Lots of kids have seizures. Just because he has had this one, doesn't mean he'll have another. His fever just must have spiked with the ear infection. Blah, blah, blah." Cole came out of his post-ictal state, we set a follow-up appointment and they sent us home. We reassured my parents, who were miraculously coming through town, to just continue on home. I was terrified. So many things were running through my mind, in the forefront..."I did this. It's my fault".

I have no family history of seizures and all of my tests have normal results. I was assured that my epilepsy was not genetic, so I was not worried about having children with seizures. I was reassured over and over that this was just a fluke thing and that he would be fine. Brian and I were really concerned about leaving in a couple of weeks on a vacation that had been planned for a year. What if Cole had another seizure? My caring and understanding extended family, reassured me that even if he did, they had seen plenty of my seizures and could take care of him. They told us to continue with our plans. They would (and did) take excellent care of my little boy. He finished his round of anti-biotics and by the time we had returned home from our vacation we had convinced ourselves that it was a febrile seizure, just like the ones many other small children randomly had with high fevers.

I had scheduled Cole's six month well check and immunizations for a couple of days after we returned from our vacation. August 6, 2008 I took him in as a happy, healthy little boy. He had his shots, continued to be off the charts for height and we went home. My husband came home from work and my brother-in-law came over for dinner. We were sitting in the living room afterwards and my BIL was holding Cole. He said, "What's wrong with your arm?" to Cole and then tried to move it. It was stiff and started to jerk. We gathered everything and got to the hospital in record time. I am so glad we lived close to Primary. Cole stopped seizing in the ER and we started to talk to the doctors about epilepsy. They ordered a spinal tap, MRI, CT and a bunch of blood work that was not ordered on our previous visit. My parents were surprisingly, in town again. My poor mother had to leave the room when they did the spinal tap as I am sure a whole lot of suppressed memories came rising up. We all thought we were in a nightmare.

After the MRI, we went back into the trauma room and Cole started seizing again. The doctors could not get him to stop. They gave him Ativan, a loading dose of Phenobarbitol, Fentanyl and started a prophopol drip. At this point they had to intubate him and eventually put him on a ventilator. I was calm on the outside, because I knew what was going on. I had been in these situations before with patients. Never my own flesh and blood. I explained what I could to Brian, everything was going so fast. When they decided to intubate that is when I really started to freak out inside. I worked with patients on ventilators. I had never had a seizure so bad that I had to be on one. Plus, his heart was still racing after all of those heavy drugs. In the end, they told me his seizure lasted for approximately 2 hours.

Our entire family was traumatized, as everyone would be. We spent a week in the hospital. 4 days on the ventilator in the PICU and the rest on the neuro floor. All of his test results came back normal, just like me. We came home on Phenobarb. Cole did not have any more seizures until February.

Cole now has four different types of seizures that we know of. Drop seizures (atonic), Grand Mal (tonic-clonic), complex partial and absence seizures.As the year 2009 went on, Cole had tonic clonics with and without fevers. He also started to have some partial seizures where he would just tremble on one side. Summer came and we noticed that he was rolling his eyes and his head would drop every so often. It was happening more and more and the neurologist told us they were seizures. Cole had participated in a few EEGs by now and all of them had come back normal and inconclusive. We just were told to watch him and report any changes. These seizures where his head just falls forward for a second are called, absence seizures...because he is absent for a moment. Cole had another EEG in September 2009 and it finally showed some abnormalities. It was concluded that he has over 100 absence seizures a day, even in his sleep. We decided to take him off of phenobarbitol because of the side affects and started Keppra in September.

Cole started having drop seizures in the summer of 2009, where he will just pass out and drop. They happened occasionally at first. The drop seizures have progressed to the point that he has an average of 30 a day and he has to wear a helmet.Cole is now an active two year-old. His fine and gross motor skills are almost a year delayed. His speech has been more delayed, but is progressing. At the beginning of 2010, he could barely speak. He is now forming sentences. We are hoping that the ketogenic diet will at least decrease his drop and absence seizures. It would be wonderful if they could stop completely.

UPDATE: August 2010
Cole has been on the ketogenic diet since June. His drop seizures have practically disappeared. He no longer has to wear his helmet, which is wonderful! His absence seizures have also decreased. However, he still has all 5 types of seizures at this time. The myoclonics and absence during the night have increased since the initiation of the diet. He continues to have complex partial seizures and has had more frequent tonic-clonics, though they have drastically been reduced in minutes. The average length for tonic-clonics before the diet was 20 to 30 minutes, sometimes longer. He has not had one over 5 minutes long since the initiation of the diet.

Cole has been diagnosed with Dravet Syndrome, which is a rare form of epilepsy. There is a 1 in 40,000 chance of having Dravet, and only around 1,000 cases are reported in the world. There are probably more that are not officially diagnosed. Dravet is a regressive disorder, which means Cole will get worse as he gets older and possibly lose skills that he has now. At this time, it is likely that he will be dependent on his parents, for the rest of his life. He has a mutation on his SCN1A gene and other features of the disorder. You can learn more about Dravet here.

He also has other symptoms that have not been categorized into a diagnosis. We are seeking out specialists at this time to try and get him all of the help that we can.

At this time, Cole is still on the ketogenic diet. His drop seizures have gone into hiding, unless he is outside. He now has 6 or 7 types of seizures that we can categorize. His seizures have become more frequent, though they do not last as long. We have been very pro-active with the rescue medication and give it almost immediately now, resulting in controlling most seizures within 10 minutes. He is still sensitive to light and temperature and a lot of other things that are typical to Dravet Syndrome. We are hoping to get a service dog for Cole to help him become more independent.

Cole continues to have 7 different types of seizures: tonic-clonic, absence, atonic, myoclonic, atypical absence, tonic and complex partial. He still has hundreds of seizures a day, most of them are very short. He was on the ketogenic diet for over a year and has since been weaned off due to complications. The diet helped to control his atonic drop seizures and he still does not wear his helmet at this time. Cole has been progressing with his speech and language, but continues to remain delayed in some areas. He will be starting special needs pre-school in Sept 2011. Cole shows many signs of dysautonomia, something that is common with kids who have Dravet. He is sensitive to light and temperature, has a rapid heart rate and bouts of excessive thirst. He is also sensitive to patterns, noise and overstimulation including getting excited or angry. He had a g-tube to help with medication and for the times that he stops eating completely or is dehydrated. At this time, he sees specialists at Miami Childrens Hospital Brain Institute every six months. Overall, he is a happy boy who enjoys his version of life since he does not recognize that he is different. Cole will be receiving a special multipurpose service dog in October 2011, who will hopefully become his best friend.

Dravet has shown us that we can find our groove, only to have it change in an instant.  So we are constantly trying to adjust, tweak and make decisions that will lead to a better quality of life for Cole.  He is still having all of the same seizure types, with different presentations.  Every day changes.  What was normal a couple of weeks ago is not normal for today.  Cole remains a strong, happy warrior.  Even though his body is racked with seizures and his brain just can't catch a break, he surprises us daily.  We have learned to never say never when it comes to Mini-Hulk!  In the last few months since updating, he has become potty trained, has learned to ride a bike (with training wheels) and has traveled for long periods in the car!  His new buddy Slugger, who joined our family in October 2011, has changed our lives dramatically.  We are so thankful to 4 Paws For Ability for putting all of the time and effort into each one of the dogs that graduates from their facility.  Cole continues to see the team at the Brain Institute at Miami Childrens Hospital in Florida.  He really enjoys going to school when he can and his favorite part is riding the bus.  At this time, we are doing all that we can to ensure quality of life over quantity.  As we watch the little boy that we know and love slowly slip away, we have hope and faith that he will regain his skills but cherish every moment that he is with us.  We are so thankful that we have the chance to be his parents and learn from his strength and resilience.

Cole is still constantly changing.  He loves to confuse doctors and his parents.  He is the definition of resilience.  Overall he has no idea that he is different and proves to us each and every day that you can be happy and laugh even through the darkest struggles.  He has so many restrictions in life, but he shows us how to be happy and how to celebrate the big things and cherish the little things.  His best buddy Slugger is still proving that he is worth his weight in gold every day.  He is so important to our little guy and is the first thing he asks about when he wakes up and the last thing he talks about before they fall asleep together.  Cole continues to see many specialists and doctors and we are going to Miami Childrens Hospital on average every 4 months.  His seizures are to the pointe where he is having around 2 or 3 major tonic-clonics every day and around 8 or 9 major nocturnal frontal lobe seizures every night.  He still has hundreds of myoclonics a day.  He has made a lot of progress in school and will be going to a special education kindergarten class in the fall with his nurse and Slugger by his side.  We are so thankful for our wonderful school.  It has totally been worth the move across the country to get him what he needs.

*If you want to contribute to Cole large medical debt, you can contact us by e-mail or use the PayPal button on the sidebar of our website.*

Monday, March 15, 2010

Niki's Story

I am a cardigan addict. If I had an extra hour in the day, I would spend it reading. I have a thing for shiny shoes. I wish I could run a marathon. One of my dreams is to live on the beach, with the mountains nearby. I will have the improper use of an almost every post. My grammar on this blog would probably make my Honor's English teacher, Mr Fagg (yes, that is his real name) shudder and I totally overdo the bold and italics. However, that is the great thing about blogging, there are not many rules. I use emoticons, way too many explanation points and no one really cares, or at least do not make it known that they care. It's great! I am known to be really competitive and have sustained a Wii-related injury.

I am also a mother, wife, friend, advocate, social worker and a bunch of other things. I like to cook, have a thing for organization, and I have epilepsy. My first seizure was when I was 7 months old. It lasted over 45 minutes. The doctors told my frightened parents that I would either be severely retarded or dead by morning. Neither of those things happened.I have my strong family to thank because I never felt like I had a serious disability. I knew I was different, but they instilled in me (with help from a stubborn streak) the feeling that I could do anything I wanted to. I have always had a defiance when it comes to someone telling me I can't accomplish something because of my limited body. 'They' said I would be severely delayed and wouldn't be able to learn...I got straight A's. 'They' said I would never be able to go to college...I started three days after I graduated from high school. 'They' said I would never be able to move away from home...I have lived in Israel, Hawaii, and multiple other towns away from the farm where I grew up. 'They' said I couldn't attend my high school graduation...I was doped up with Valium, but I was there. I have been a director for several companies, my professional resume is quite stacked for someone so young. The list goes on and on. Hard work and being more than a little independent has gotten me to where I am today. Not every one is this way, but I feel grateful that I have lived a semi-mainstream life. It was all about the attitude that nothing could keep me away from something that I really wanted to achieve.

Life was never easy. Everyone around me had to struggle to make sure I was safe and taken care of. "They" whoever "they" are including doctors, well-meaning friends and associates, etc. never knew they were just bringing out the fighter in me. Now I have to be a warrior for my son. I want others to know that epilepsy and seizures affect 3 million Americans, with 200,000 new cases each year. That is more people diagnosed with epilepsy, than with breast cancer each year. I have felt embarrassed, judged, hurt, ostracized and a host of other feelings because my brain doesn't function properly. I have had to accept that it isn't my fault, it's not my parents fault, or a doctor's fault. It's just something that happened and has made me a stronger person. I went through a lot of guilt when my son was diagnosed because I had lived through the struggles and pain that comes with a disability that no one really knows a lot about. It's taken some time and some real self-examination to realize that it is not my fault. I have started to turn my guilt into passion. I hope that others out there who know someone who has seizures, recognizes that it is a disability. Also, with hard work, most people with epilepsy can be just as successful as "normal" people. If any of us are really normal!I have had three different types of seizures. When I was younger I had staring (absence) seizures. I also had petit mal (Complex partial) seizures, most affecting only one side of my face. I continue to have grand mal (tonic clonic) seizures, but not to the extent of those in my childhood or adolescence. I do not have an aura, and there were no specific triggers for my seizures when I was younger. My seizures started out like most stories, with febrile seizures. They progressed and by the time I was two years old I was having seizures with and without fevers. There were a couple of occasions that I had up to ten major seizures in one day. I was so drugged that I was either so hyper or so sleepy that I had no quality of life. My parents made the decision to take me off of medication before I entered school. There was no rhyme or reason to my seizures. I could have them when I was sick, or jumping on the trampoline, or for no specific reason at all. I went back on medication in high school, but there was a two year period in junior high where I had no recorded seizures. I also had a period in college where I was 15 months seizure-free and another where I had 19 months without one. The longest period of time is three years, where I had no recorded seizures. It is especially devastating when I have gone a really long time without a seizure and the beast rears its ugly head again. I find it is the same with Cole's tonic clonics.
After hundreds and hundreds of seizures, my epilepsy is fairly controlled. I am not on any medication. Through finding out about Dravet Syndrome and diagnosing Cole, we have discovered that I also have an SCN1A mutation. This does not mean that I have Dravet, but most likely fall on the spectrum of GEFS+ (Generalized Epilepsy with Febrile Seizures Plus). It was a wonderful/heart breaking moment to realize after almost 30 years that my epilepsy is connected to a genetic mutation. At this time, I am rarely having seizures. One of my last was in June 2009. Someone found me in a parking lot, where I was going back to my car after picking up food for my extended family. They called the ambulance and found my Dad's phone number in my cell-phone. They were gone by the time I was coherent. Unfortunately, I have a lot of stories like this. This particular seizure was in the aftermath of a lot of emotional and physical stress, as all of my seizures in adulthood, since 2003 have been. So all I have to do is never be stressed, get plenty of sleep, eat right and everything is okay...yeah, right! My world is full of stress, but I have to take care of myself or I can't take care of or be of any use to anyone else. I am so glad that my husband understands this, because he is the one who pushes me to rest. I would just run around on 'empty' if it were not for him. It seems that a surgery to close a PFO in my heart has made a difference for my seizures. Taking care of Cole on a daily basis makes me realize how important it is to have a strong support system when you have a crisis. Cole's epilepsy is already worse than mine and there are new symptoms appearing all of the time.
I would define myself as eclectic. I love a lot of different food, activities, styles, types of music and so on. I love to try new things. One thing that constantly stays the same though, is how I feel about getting the word out about Dravet Syndrome and epilepsy. I want to make this blog a safe space where people who are struggling with this condition can connect and realize that there are other people out there that are going through the same thing. It is also to help keep all of our wonderful friends and family updated on Cole's progress and treatments. I am sure that my super educated friends with Harvard degrees wince when reading all of the grammatical errors on Warriors, but that is in between their smiles. We use this site as a place to connect with other people. It has brought a lot of good into a lot of people's lives. We hope that it does the same thing for you, whether or not you have seizures. Feel free to e-mail us. We need to spread the word and do something about epilepsy. This condition, just like a bunch of others, needs warriors!
Photos by Capture Me Candid