Brains Are Equally As Important As Boobs

*cough*  Um, hey there!

This space has been pretty dead for a lot of reasons, the main one being that we are just in the middle of surviving.  It is hard work.  Don't feel neglected though, you're not the only one!   I've been neglecting my hair, my church callings, friends, Fall baking (and we all know how important that is to me) and a host of other stuff....it's a group thing! ;)

I decided to clear the cobwebs and dust the old blog off though for something important.  It might take me three hours to write this post, since Cole is in his cycle and I can only write when he is resting in between seizures, but here it goes.

It can really bother me when I have people come up and tell me how glad they are that Cole is doing so great.  Huh?  What are you talking about?  Sometimes I just nod my head and say, "Yeah, it is great".  No one really wants to know that we have been to hell and back multiple times this year.  It's possibly my worst year ever; but, kind of like the tech who did my MRI yesterday said, "But you look like the picture of health!"  Yet here I am for yet another test! ;)  We need to work on our sick face, I guess.

It is obvious that these particular people only get their information from the snippets of this and that on Facebook.  Just because we haven't been in the hospital, doesn't mean things are going great.  It is because the hospital told us that they really can't help Cole any more.  That is our reality.  We just have our mobile Emergency Room here at the house with our team and equipment spread everywhere.  We batten down the hatches and hunker down whenever the bad days hit.  We have been occasionally having really good days, and we celebrate that, but the bad days would make even seasoned veterans shake in their boots.  Even we like talking about the good days more than the bad ones.  Not a lot of people can relate to having to watch their child shake and turn blue multiple times, among other things.  I'm glad for them, but it makes conversation difficult for some when they can't immediately find something in common.  It's uncomfortable.  So they just get what they can from those bits of social media and call it good.  Hey, we like to talk about the weather too!

Turns out, taking pictures of seizing children is really hard, who knew?

Now I love social media, especially Instagram.  It lets me see pictures of my nieces and nephews or friends that we live so far from, that is seems like a world away.  It is a way that my grandparents can see pictures of Cole, even though they have not seen him in person in 4 years.  It is also just a way for some people to stalk others and believe that they have the whole truth and nothing but the truth.  No matter how many "keeping it real" posts you do, no picture or status can explain everything about someone inside and out.  Nothing can compete with a sincere, genuine interest in someones life and that's what real friends are for, not just online acquaintances.  There is a place for both, but just because you follow someone on social media does not mean that you really know them.  I have actually had someone tell me to my face that, "The entire universe knows when Cole has a seizure.  It is all over the Internet!"  Wow.  Just.  Wow.  I was so shocked that I even came home and went through all of my posts of any kind.  I was questioning myself and wondered if it was really TMI as this person had been describing.  Not even 1/16th of anything that really happens to Cole makes it to "The Internet".  I didn't mention it once, during 346 convulsive seizures last month.  We consciously choose happiness, and choose to focus on the good.  Sometimes that is hard work, but we function better that way.  Being depressed can also be hard work.  Just because you don't see graphic posts doesn't mean that it is sunshine and rainbows around here.  I don't mean to be a downer, but this person obviously didn't choose to get to know us intimately and did not understand our day to day life.  That's okay!  Just don't make assumptions.  I don't assume that you are self absorbed if you post a picture of yourself, or if there are more than two posts in a day.  Or if everything looks perfect, then you must be deluding yourself that you are perfect.  Or if you go and have fun without me that we are no longer friends in real life.  Who makes up these secret rules anyway?  Maybe that is why I have really backed off on most social media.  It is a platform to automatically judge something or someone, with a picture or a sentence,  and I don't like that.  I'm going to keep my feed full of things that are important to me, because it is MY feed!  You should do the same.  I'm not going to stop being on Facebook, because that is where I connect with other Dravet and 4 Paws for Ability parents.  I get good information there, amongst the garbage.  I am just not sure when being real friends was replaced with pushing a like button.

No one wants to come up to me and automatically be my friend if they saw a picture of me floating around where I was covered in drool, holding a child that looked like he had been beaten up.  Most likely they would want to stay away, or call authorities.  I get that.  It's a side that I don't particularly like either, but it is real.  Most would prefer this.  Don't we look cute?

Take yesterday for instance.  Cole fell forward and hit his head on the wall as he started to have a seizure, even though I was right there and caught him.  I just happened to catch the bottom half as he went down.  Those red marks on his noggin are not blood, this time.  That's not just casual conversation that you can bring up anywhere.  It would make the majority of people feel unsettled if I came up and started describing the details of our day to day life.  So how much is too much information?  Where is the line between advocacy and emotional vomit?  I have seen some other parents just share too much, even for me-who tends to be an over sharer, according to some.

Now, why all the hype?  November is Epilepsy Awareness Month.  Did you know that?  Are there people in your feed that are bringing awareness? Or is it just too much information?  How many people talked about Breast Cancer in October?  Wore pink?  Even professional sports teams, talk shows, the radio, bakeries, etc. participated-the promotion was every where.  Look, I am all for boobs...I have them, even if they are slight; and I have nothing against Breast Cancer.  In fact, I have someone that I care about who is fighting it right now.  It is a horrible, horrible thing to go through.  I just want to bring light to the fact that it is somehow easier to talk about boobs than brains.  Are people more comfortable with it because they know so many other people with breasts?

That doesn't make sense really, because there are more people will brains than breasts.  All people have brains, whether we tease about it or not.  No one on the Wizard of Oz was wishing that they had a great rack!  Some are more willing to talk about mastectomy's than the fact that my child will never have a chance a remission.  He doesn't have the options like chemotherapy or radiation.  He will have Dravet Syndrome forever.  He will never be a "survivor" in that sense where he is "free" from his illness.  It deserves just as much advocacy or more.  A body can live without boobs, but not without a brain.  Did you know that there are more deaths per year from Epilepsy than Breast Cancer?  More.  Foundations like this one have my respect but they are few.  We are lucky that we can have this roller coaster we are on remind us that the downs can make you feel like you are going to puke, but the ups are thrilling.  We try to focus on the ups.  If you are our friend in real life, via the Internet or even just an acquaintance who happened to stop by our site, maybe you could take a couple of moments this month and educate yourself a little about seizures, know as much about them that you do about Breast Cancer.  If talking about brains or seizures makes you feel unsettled, just look at a couple of websites, like CURE or Dravet Syndrome Foundation or American Epilepsy Society.  Or you can think about Cole.  It is easy, because he is pretty cute.  We are going to continue to be advocates, even if makes others feel uncomfortable.  It is important, to us.  In our world, it is not too much information.  It is the reason we started this blog.  To educate others and provide support.  I'm not promising that I will be writing frequently, but enough people came up to me at the Dravet conference and mentioned my blog that I know it is helping someone, some where.  Here is to hoping that we all can have more days like this one.  Outside, walking, talking, eating by mouth.  Things that we can easily take for granted, but for Cole they are a victory.

Surrounded By Greatness

I have never really been star struck. I can have a conversation with a CEO or a governor and I won't get nervous. I remember being nervous the first time I met Dr. Dravet. She just represents so much emotion in my life. This year was much better ;)I love that this conference not only gives you the opportunity to connect with other families, but with incredible doctors; who could end up helping you in the future.
The consultations are incredible and you have the chance to have one on one time with the best doctors in the world...without having to pay a dime! I try to tell everyone that you are entitled to a second opinion, and a third and a fourth. You are the best advocate for your child and should totally trust your doctor and treatment plan.I had the opportunity to once again share meals with these people and get to know them outside of their offices. It was something that really impressed me at the first conference.
We had the opportunity to hear from doctors around the world with the magic of the internet. There were presentations from Italy and Australia, even though the doctors were not physically present. We can give each other feedback and spur ideas for new research and treatments. It also gives us the opportunity to laugh. I made Dr Miller laugh more than once with a recount of our summer. See, even he thinks we are never boring ;)

DSD4

Home from the Dravet Syndrome Spectrum Disorders 4 Biennial Conference! I have been working for months and months to prepare for this and I was so busy the entire time. I am so glad that we got the opportunity to participate in something that we are passionate about.

When I was deciding what to pack, I had to conclude that I have a severe addiction to stripes. It might be hereditary.I spent a lot of time putting together these bags for the families and doctors. Special shout out to my amazing committee!I even had Dr Dravet herself sign my book! Can you believe that she didn't have a copy? I was pleased to be the person to present her with a copy of her own book. It was amazing that we were able to give these to every family.
She is not a fan of getting her picture taken. I got a better photo later on in the week. So much happened! We saw old friends, made new ones and learned a lot. I will need to break it all up or the post will be a mile long!

Spotlight

I got the chance to be interviewed for an amazing blog: This Little Miggy Stayed Home. Miggy is a true rockstar and I am honored to be a part of her spotlight series! She is an incredible artist, her paintings are beautiful. She has also been featured on design blogs, is a musician and mom to her adorable daughters, Princess Sparkle Pants and Lamp. You might have seen some of her stuff floating around on Pintrest, but her trailblazing with Lamp is what I respect most about her. I have enjoyed her blog for a really long time and we have been trying to do this for a while. So, I will post our conversation over here on Warriors. Go check it out!

FRIDAY, JULY 27, 2012

Special Needs Spotlight: Cole

I am Niki, wife to an amazing man and mom to 2 kids--one human and one very special dog. I am a cardigan addict, love to cook and I have epilepsy. I was a medical social worker in my previous life, but now I have the cutest boss ever, my son Cole. He keeps me busy! Cole has Severe Myoclonic Epilepsy of Infancy (SMEI) or Dravet Syndrome. Dravet (draw-vay...it's French) is rare and only about 1,000 people in the world have been diagnosed with it, though I am certain that there are more out there who have not been properly diagnosed. Cole is one of the rarest of this group, since he has an inherited genetic mutation on his SCN1A gene, from yours truly. Only 5% of SCN1A mutations are inherited. Dravet is one of the worst forms of Intractable (very difficult to control and treat) Epilepsy. Despite his daily struggles, Cole is a happy kid who likes to swim, pretend that he is in a band and loves jumping off of furniture. He adores his service dog, Slugger and goes every where with him. He is ridiculously funny and is always making us laugh. He is my warrior boy. I write about our journey on www.epilepsywarriors.com

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Miggy: You have a unique situation (a spotlight first I believe) in that you and your son, Cole, both have epilepsy. Did you know your son would probably have this disease? How did your experience as a kid shape your perspective and fears when it came to your son having it as well?

Niki: This is going to be really hard to condense into the Reader's Digest version! First-I had no idea that I had a genetic form of epilepsy. No one on either side of my family has seizures and all of my tests come back 100% normal. Doctors eventually told me that it was a fluke and that maybe it was caused by birth trauma. I never worried about having children with epilepsy. I am a perfectly mainstream individual who got straight A's, has always been independent and never needed any kind of special assistance. I drive, I worked, I have 3 degrees, I was "normal"...whatever that is :) I had a difficult pregnancy, with some issues that all resolved before I delivered, but we had no idea that there was a problem with Cole. He had awesome APGAR scores and I was infatuated with him from the moment I saw him. He was absolutely perfect in my eyes and for the first 6 months he was meeting all of his milestones. Hindsight is 20/20 and I can see now that there were issues from the beginning, but I was a first time mom and had nothing to compare it to. You can imagine my horror when Cole had his first seizure at 6 months old. I knew exactly what was happening and in the forefront of my mind was, "I did this!" In short, it was a very long road to get his diagnosis and through many tests we have discovered that I have something called Generalized Epilepsy with Febrile Seizures Plus, or GEFS+, and Cole has Dravet Syndrome. Even though we both have an SCN1A mutation, our epilepsy is very different. My experiences growing up with something that no one really understood has definitely made me more empathetic, but has also caused me to grieve a lot. I never really knew I had a disability, but I did know what it was like to be different. Try explaining to your date why you passed out and peed your pants. :) Even though Cole and I look absolutely like anyone else on the street, we are very different. You would never know from initially meeting either one of us, that something was wrong. This has been a blessing and a curse. Over the years it has caused a lot of heartache to realize that even though I turned out to be extremely high functioning and independent, I know that Cole will not. However, doctors told my parents after my first seizure, which lasted 45 minutes, that I would either be, "Severely retarded or dead by morning". That obviously did not happen, so I spent my entire life consciously defying the odds. I know to never place limitations on Cole, because he will prove me wrong every single time. Even though he will need to live with me for his entire life, I know that he can do almost anything, just in his own special way.

Miggy: Tell us a little about your epilepsy, vs. your sons. Are you symptoms and the type of seizures similar? How do you handle this double-duty care?

Niki: Wow...even harder to condense. Like I mentioned above, our epilepsy is very different. At this time, I am seizure-free and have had stretches as long as 3 years where I have not had a seizure. There were periods where it really inhibited me, but at this time, I manage well. Mine always stop on their own, but Cole needs immediate medical assistance for his bigger seizures. Cole's longest stretch seizure-free was 5 months, before his diagnosis. At this time, he is having anywhere from 200-400 small seizures a day. With bigger ones that need medication to stop it about once a day. He has seven different seizure types, where I have only had three and in adulthood I only have one type: tonic-clonics. Cole is constantly seizing, getting ready to seize, or recovering from a seizure, so he has to have someone with him-always. Privacy is a thing of the past in our house. He had to wear a helmet for a while to protect him when he fell constantly. He has Diabetes Insipidus (has to do with your kidneys) and Reflux. He can not feel pain like other people and has literally ran around on a broken foot for two days. He has no awareness of safety. He has been on special diets. He also has dysautonomia and has a lot of issues related to this. He can not control his body temperature, so he needs a cooling vest or lots of layers if he goes outside. Even taking a bath can be enough of a trigger to cause him to seize. He also needs special prescription glasses with special FL-41 lenses in them since he is sensitive to light. He is triggered by noise, new experiences, patterns, weather, textures, the full moon and who knows what else. He gets overstimulated very easily and will have more seizures any time he is agitated. He has spent so much time in the hospital that he has actually said, "We're home!" when we pull in to the parking lot. The paramedics know us by name:) His longest seizure was over 3 hours. There was a time when we actually were homebound for an entire year and a half. We did not go anywhere but the hospital. Even just walking from the house to the car was enough to cause him to have a major seizure.

We ended up moving across the country to get him better care and even though it took us away from every thing we knew, it was the right decision. He has gotten a little better with the light issues, so we try to get out a little more now and maybe we are just getting braver as time goes on. Still, every time we walk out of the door we take a risk; we are armed with a lot of paraphernalia, including a nurse and Slugger, just to take care of him. Sometimes it is weird, little things that we totally can't avoid that get him, like the carpet at our church. So-Cole doesn't go to church. We have to figure stuff like that out through process of elimination and avoid those places. He goes to a special education pre-school after a long battle and I am so proud of him. He loves it and has really come far. We have worked long and hard to give him the best life possible. The most difficult thing about Dravet Syndrome is that it is constantly changing. He is always having new seizure types, new triggers, medications that were once working, stop working. Always something new to try to figure out. We have become great detectives, but sometimes we have absolutely no idea what is causing what. Handling double-duty can be difficult. Cole needs someone who knows him really well and is medically trained to be with him at all times. So, this makes going anywhere really difficult. We can't just call a baby-sitter. I have not slept in the same room as my husband for over 2 1/2 years now since he sometimes has seizures at night and needs someone with him. I know that if I am stressed, have not been sleeping well and have not been eating right, I am setting myself up for a seizure. Show me a special needs mom who doesn't meet all of that criteria! :) I just have to make a really conscious effort to not get burned out and try to take down time every day. Doesn't always happen though-hey, showering is overrated! I truly just try to cherish every day that I have him with me. Seriously, that was the short version! Good questions! :)

Miggy: What are the biggest worries you face for Cole?

Niki: Honestly, I wonder who is going to be able to take care of him. There is a high mortality rate for kids with Dravet, a lot of children die in their sleep, but there is not a lot of research out there since the population is so small. He could live until he is 13, he could live until he is 30. I have no idea. His care is so complex and life-consuming that I worry about who could handle it if something happened to me or my husband.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Niki: Stuff like this happens to us every day. We love to laugh and find humor in our life. A lot of the funny conversations lately revolve around Slugger. People act like we can't hear or see them while they talk about us or don't notice them taking pictures of him. I was orienting a new nurse the other day and had Cole's many medications laid out on the table. Cole picked up the Diastat (a rectal suppository), showed it to her and exclaimed, "This goes in my butt! I just laughed and said, "Yep! It does" and moved on with my orientation.

Miggy: How can people best approach or respond to Cole? Is there something you wish other people knew so as to avoid awkward or hurtful situations? Again, perhaps you have even better insight since you dealt with this as a kid as well.

Niki: I wish that people would take the time to get to know Cole. He is adorable and totally worth the time even though it can seem overwhelming! We, as a family, can be hard to understand since there are so many limitations on what we can/can not do with him. Don't be afraid to ask questions. I would much rather that you ask than come up with your own answers. It won't make me feel awkward. Not a lot of people understand epilepsy, heck-most doctors don't understand it! Don't be afraid to talk about it. It is a part of our life, but it doesn't define us. Also, if you see someone who is having a seizure, or trying to assist some body who is having one, ask if they need help. I know it looks scary, but sometimes they could really use your assistance.

Miggy: What is the biggest lesson you’ve learned since becoming a special

needs mom?

Niki: ALWAYS be flexible. Don't sweat the small stuff.

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A huge thanks to Niki and a yee-haw for the spotlight being back! I have to say, this is another one of those spotlights where I feel like I've just had the glimpse inside the life of a supermom. As all-consuming as Cole's care is, I appreciate Niki's ability to laugh and find the joy in her life--because it is joyful. I think that's one trick to life with special needs kids and one trick to life in general. Thanks again Niki!

As always if you or anyone you know would like to be a part of the special needs spotlight series, please email me at thislittlemigg at gmail dot com. And if you've emailed me and haven't heard back, please be patient--I've still got a day job you know. :)

Have a great weekend.

Exciting Research

This announcement just came out:

One of the distinguished speakers at DSD4 is Jing-Qyong Kang, MD, PhD, of the Vanderbilt Brain Institute, Vanderbilt University Medical Center, Nashville, Tennessee. Dr. Kang was awarded the 2010 Dravet Spectrum Disorders Research Award. Dr, Kang's main research goal is to try to understand the molecular basis of Dravet Spectrum Disorders that are associated with GABAA receptor gene mutations, in order to identify possible therapeutic targets.

Dr. Kang explains her pioneering research: "As we know, mutations in GABAA receptor and SCN1A genes are frequently associated with epilepsy ranging from simple febrile seizures which remit as patients age to severe epilepsy with mental compromise like Dravet syndrome. In general, most Dravet syndrome patients are associated with mutations in SCN1A. There are a few pedigrees of Dravet syndrome are associated with mutation in GABRG2. Animal models have demonstrated that SCN1A mutations impair GABAergic interneuron activity. Thus understanding GABR mutations may shed light on understanding the underpinning mechanisms of both groups of genes.

"In the last two years, with the help of the funding support from Dravet organizations, we have characterized a number of GABRG2 truncation mutations associated with epilepsy/Dravet syndrome. We have demonstrated that all these truncation mutations resulted in the loss of function of the mutant alleles. These mutant GABRG2 subunits may have different protein stability and are degraded inside cells at different rates. Consequently, the different GABRG2 truncation mutant subunits had different dominant negative suppression on the biogenesis and trafficking of the wild type partnering GABAA receptor subunits. "

The different truncated mutant GABRG2 subunits have disturbed the cellular homeostasis which may lead to neuronal dysfunction at different levels.

"We hope our work could help pave the way for identifying a novel therapeutic target other than the conventional anti-epileptic drugs which may eventually lead to a cure for at least a subgroup of epilepsy/Dravet syndrome patients. I am extremely grateful to Dravet organization for supporting my research." 

Meet Dr. Kang and other Dravet experts at DSD4.
Requests for small group patient/family consultations with faculty physicians are available on a first-come, first-served basis.
Space is limited, so register today for:
 The 4th Biennial Professional and Family Conference for Dravet Spectrum Disorders
August 16-19, 2012
Minneapolis, MN
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Also, this article gets me excited and features our own beloved Dr Miller

DSD 4

I posted this on Facebook, but for the rest of you (lovely lurkers included), I wanted to make sure that you hear the news!


The 4th Biennial Professional and Family Conference for Dravet Spectrum Disorders is coming up in August!  This conference is one of the best things we have ever attended.  This year, it is going to be even more amazing.


An announcement from Joan Vogel Skluzacek-Founder of the IDEA League (now Dravet.org):
The doctors and other speakers who we are inviting to participate as conference faculty are showing remarkable enthusiasm and support for this event this year. Seven clinical epileptologists with special interest and expertise in DS have already agreed to provide small group consultations in addition to giving their talks. Some are going to great effort to work this into their schedules, around their vacations, etc., and they are very willing to volunteer their time and effort to prepare and give their talks and consultations. As a parent and as a Dravet.org volunteer it is very gratifying to get this insight to how much they care and how great their interest and enthusiasm is for doing this work and helping our cause. It is going to be a wonderful conference!


I can not tell you how excited I am about this.  The number of physicians attending has really increased, and this is so wonderful to a community that is relatively small.  It is totally worth the time and travel to meet with these doctors and have them consult on your child's case.  These consultations would cost you thousands of dollars if you met with these physicians at their respective hospitals.  Plus, it also provides them more insight into DSD, helping our future.  I also want to add, getting to know other Dravet families from around the world is amazing.  I would encourage every one, even those who do not have a proper diagnosis, but have this feeling that their child could fit into the category of Dravet Spectrum Disorder or Ion Channelopathy, to try their hardest to attend.  The conference is in Minneapolis, Minnesota this year, August 16-19.  Plus, for those in the U.S. most travel expenses for attending medical conferences are tax deductible-bonus!  Here is the link for registration.  You can even invite your therapists and pediatricians, they can get credit for this conference.


This conference is only held every other year, so do not wait.  It doesn't matter which organization you are affiliated with, this conference helps all of us, and the doctors who treat our children.  We actually attended, last minute, before we even got Cole's proper diagnosis.  I knew in my gut that he had Dravet Syndrome, but the doctors were not on board yet.  You can imagine with my personality, that I went in to it wanting to learn all that I could, if this was going to be our new life.  It can be a little intimidating for newly-diagnosed or undiagnosed parents, but let me tell you this-I am SO glad that we went.  I learned more in two days than I had in hours upon hours, upon hours of looking on the internet for two years.   For those who have had a diagnosis for a while, or have older children, these presentations will not be as much of a shock to the system, more as an education.  I have been in the medical field, professionally, for a long time but I learned things about bone health, genetics and other subjects that I had never learned about at work.  It was here that Brian and I introduced the FL-41 lenses to other parents who had photosensitive children.  It was here that I started giving iPad demonstrations to anyone that would listen, parents and doctors alike.  Some were so impressed by my passion that they wanted to provide iPads for multiple children and now it is a vital part of their charity.  Others found that there was a better alternative to bulky, expensive communication devices they were using.  We were at the conference when we first got to meet families that had seizure alert dogs from 4 Paws for Ability.  It was also the first time that I had really talked to a family that had a service dog (there were 4 there, if I remember-it's been 2 years!).  It was here that I learned about Miami Childrens Hospital, and had lunch with most of the Ion Channel Clinic team.  You know what a blessing Miami has been in our lives, but I was first impressed by their staff at this conference.  It was here that I met Cole's local neurologist, before we moved East, in fact I sat next to him at dinner one night, and also watched him play the piano on another night.  You don't get those kind of opportunities at your regular appointments.


The biggest bonus for Brian and I is the friendships that we have cultivated from attending this conference.  You can read a little bit about my experience at that first conference here.  Hardly a day goes by that I don't have contact with someone who I first met at this conference.  We have found our second family.  We have gone on trips together, vented to each other about things that no one else could truly understand, laughed and applauded each others triumphs and asked each other questions.  It was like going to the magical land of Oz and realizing that everyone else was there to see the wizard too.  We formed an instant, dynamic family of sorts. 


Okay, okay I will stop singing praises.  I think you get the picture:)  If you want more information, e-mail me or private message me on Facebook.  I hope to see a lot of you there, and hope that you can get some answers to your questions.

Post-Ictal Blindness and Photosensitivity

I actually wrote this the morning before Cole had his post-ictal blindness spell last week. Talk about ca-razy!
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After having spoken to numerous doctors about Cole's condition, none of them have actually seen a patient who has experienced post-ictal blindness. They have only "heard about it".

Cole has experienced this phenomenon multiple times. He will not be able to see, even after coming out of a post-ictal sleep. The longest it has lasted is two and a half hours. The first couple of times it happened, we were extremely nervous. A number of things can happen during a seizure and we were afraid that he had lost his sight permanently. We now know that is not the case.

We usually know that he is blind when he does not react at all to an oxygen mask coming towards his face-he hates oxygen. He will not be able to focus, track objects and will not flinch if you bring objects rapidly towards his face, such as your hand. He will continue to be blind, even after he has regained function in all other body parts.

This does not happen after every seizure. However, it has happened enough to be classified as "normal". Normal for Cole :)

We had a thorough examination of his eye done under anesthesia, by an Opthamalogist. The structure of his eye is fine, the blindness is totally related to his neurological condition.

We feel that his occipital lobe is extremely involved during theses seizures and possibly damaged. This would also give reasoning for his photosensitivity to light and patterns. His FL-41 lenses help.

So, if your child ever seems like they are blind during a seizure and it continues long after their normal post-ictal period, know that it is rare...but possible. I would suggest adding an Opthamolgist to your long list of doctors. If your child has Dravet, they are probably photosensitive. I would highly suggest looking in to FL-41 lenses. We order ours from the Moran Eye Center in Salt Lake City, UT.

National Walk For Epilepsy 2012

We have been so busy lately with lots going on. House full of company, Jill's House, the walk, spring break, a road trip...I think I need a vacation! :)

We are so glad that we got to attend this year's National Walk for Epilepsy. There were over 4,000 people there! It was hard to get very good pictures of the crowd, because we had to keep moving. I have never personally been to such a large event based around advocacy. It was moving and I felt myself tearing up multiple times. An absolute sea of people, all with one cause, to bring more awareness.I am grateful that Cole is doing better with handling being outside and overstimulation. We could have never done this last year. We met most of Team Dravet before and walked over to the mall. You can't really see our team t-shirts, they say:

Team Dravet

Brought together by chance. Staying together for a cause.

Even though we live here, we do not go to the mall very often, so it was wonderful to be able to see it in all of its glory-construction included :)

Here is Team Dravet, 2012. We had a great turn out this year and hope to have even more next year! It was hard to stay together, but nice to see purple hats amongst the crowd and spot "family".
Speaking of family, all of Brian's siblings were together for this. Something that does not happen very often. We were so touched that they came to be a part of the walk with us.
We got to see part of another family of ours- 4 Paws for Ability! We walked with dogs Bo and, Slugger's sister, Samba. I am sure there were others there! It was great to see so many service dogs in one spot. I must say though, Slugger was one of the most well behaved dogs I encountered the entire weekend. I was a proud mama!

Showing our hometown pride!

It was a powerful thing to think about each person's story and why they were there.
A lot of people had signs and banners. This was my favorite of the day, from Team Epilepsyadvocate.com. It made me really emotional.
I know that Cole will never be society's definition of normal, but I have to completely prove myself every day. In another time, I would not have been allowed to live independently, marry or raise a family. I was glad to have a team that was there to walk for me too.
Cole gave up about 3/4 of the way through. Even though we gave him meds before it started, there were a lot of people and lots of excitement. Plus, no port-a-potties, seriously, for thousands of people they should have considered that all of the museums would still be closed! :) We did not make it all the way to the finish line. The entire walk was over 2 miles, but we did participate in the majority of it. We finished by a vintage carousel that has been on the mall since the 40's. It was good way for Cole to break away from the crowd.
All in all, it was a great day and we are so glad that it did not rain. Thanks to every one who came! Can't wait for next year!

Professional vs Personal

Here is another article that I wrote for specialneeds.com
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In my previous life (before I was a special needs mom), I was a social worker. My resume is almost as eclectic as I am and I worked with a large variety of people. Foster care, adoption, child protective services, group homes, palliative, Native Americans, teenage sex offenders, elderly, abused, medically fragile, addicted, you name it...I probably ran into them.

During this foray into my personal version of saving the world, I came across many, many people with special needs. My vocabulary included things like Individualized Education Plan, hippotherapy, Autism Spectrum Disorder, Durable Medical Equipment, tidal volume, Advanced Directives and a whole host of other words and phrases that we, as special needs parents, are all familiar with. I had no idea that I would be using these words in my day to day life, when I was not working.

As a director for several companies, I was able to meet and hopefully help parents, siblings and children navigate "The System". I also became fluent in speaking Insurance and Doctor. I seriously believe that those languages should be taught in college. It will get the average person a lot farther than a semester of German! Familiarize yourself with the right terms to keep up with the new foreign languages that will pop up in your journey.

I also learned that YOU are your child's best advocate. You know them the best and you want whatever is going to improve their quality of life. There are a lot of people out there to help you through this, but they will never know your child like you do. Anyone who is disabled in any way needs someone to advocate for them. As a parent, it is your job to second guess. Ask the hard questions and fight for what you believe needs to happen with your child.

Sometimes it can get so overwhelming that you just sit back and nod your head, letting the professionals tell you what to do-because they are professionals! I am not bashing the medical professionals out there. Hey, I used to be one of them! They went through a whole lot of school, tests and other stuff to get them where they are today. Without these professionals, the majority of us would not have a diagnosis to explain what is happening with our child. I used to have to tell my patients all of the time that they practice medicine. Trust them, but be smart enough to do your homework. I also learned that Google does not have all of the answers. Surround yourself with the right people. You have the right to get a second opinion if you want! I think that some of us forget that. Still, go with your gut and follow that "Mommy Instinct" if it tells you that something isn't quite right. If you do not get the answer that you want, ask someone else. "Who is your boss's boss?", is a great question when you hit a roadblock. Come prepared to meetings and research new ideas to present to your team, whether it is at school or a doctor's office.

Right along with being someone who gets answers, you are the best person to show your child love and affection. Sometimes we distance ourselves from things that are hard and make us sad. After being a social worker for years, I have realized that not all mothers love their children. If you are reading this, you are probably not a part of that group. No one can love quite like a parent. Be willing to give professionals all of the information that they need to get to know your child. Talk to other parents who have children with similar capabilities. Above all, don't be afraid to ask for help. You might be surprised who ends up being your personal champion.

I personally wanted to be a social worker because I could help people. It was not because I wanted to be rich or famous. It was hard, mostly thankless work. It really prepared me to be a mother. The people who are helping you today are probably there for the same reasons, they just probably get paid a lot more than I did! In the end, no amount of education can provide the same insight that a parent can.

7 Things You Don't Know About A Special Needs Parent

I really liked this article.

Todd's Paralysis

Cole has had so many "rare" things happen to him in his journey. I wanted to spotlight a couple of them in case there is another mom out there wondering if what is happening to her child has happened to someone else. One of these rare phenomena is Todd's Paralysis.

It will affect mainly one side of his body. It has also switched sides. Most of the time, he can not use one of his arms for a couple of hours after a seizure. Sometimes, it will affect his legs and he will want to walk, but cannot. Occasionally, it will happen with the muscles in his face. One side will droop and he will not be able to talk or smile for a while.

We are lucky that he has not had any permanent paralysis, which can be possible after a seizure or stroke. I just wish that I would have known about Todd's Paralysis before it started happening, time and time again. We had to go through the whole, "Why is his arm not working?!" debacle many times before we recognized that he would eventually regain function. The paralysis would keep switching sides and body parts and lasting for different periods of time. It was so confusing since he was fully coherent and out of his normal post-ictal phase. That was a scary thing to add to the complications of a seizure.

So, if you have a child who has epilepsy and for some reason, even after they are out of their post-ictal state, they can not move one side of their body-it is probably Todd's Paralysis. They will regain the function, you just need to make sure that they rest. Easier said than done, especially with an active toddler who has a stubborn streak like his mama.

Just another quirk to add to our ever expanding medical dictionary.

Stories Of Hope

Cole's story (a piece of it) is now being shared on Dravet.org!
You can go here to see it along with some of our other friend's stories.

Dravet.org, Dravet Syndrome Foundation and ICE Alliance are great resources for parents, doctors, families and patients. There are links to all of them on the sidebar of our blog.

We are so grateful to be a part of all of these networks.

IEP Warrior

Imagine an army coming through the gates. Returning home after a long, tiring stint at war. Some battles were lost, but others were won. The soldiers are crying "Victory! Victory!" as they run into the arms of their loved ones, celebrating with family, friends and even strangers. The war is still happening, but major advancements have been made and the end is in sight.

This is kind of how I feel.

I have been doing the work of an entire army (or at least it feels like it) when it comes to getting Cole a solid education and therapies. I left the Special Needs Preschool building for the county last week wanting to grab anyone I could and just hug them, screaming, "I did it!". Fortunately for the unsuspecting strangers out there, no one was in the parking lot. So I just got in my car and drove home to pick up Cole and Brian so we could go to the pediatrician. Bummer.

The months and months (well, technically a year) of preparing to get Cole into pre-school and have a proper IEP has taken its toll on me. Emotionally and probably physically. I understand how important it is for him to get the right support at school to even give him a chance at a proper education. It is one of the main reasons that we made the move East.

I've got document after document. Letters, therapy notes, psychologist evals, medical records, and other mumbo jumbo that says my son needs a full time nurse, he needs special education, he needs this, he needs that. After all of the hullaballoo that we went through last time, this particular course of testing and meetings have made me go in with the utmost preparedness, ready to draw my guns and get them blazing in seconds if I came up against resistance. Last time I was prepared, but was not even given the chance to speak. I knew I could not be silenced again. Fortunately, I did not have to put up much of a fight this time around. I assembled enough information (or perhaps overwhelmed the committee with so much information) that they did not put up much dispute. Now, I didn't get everything that I wanted, but I was willing to take what I could get. It is leaps and bounds ahead of where we would have been if we had stayed where we were.

Cole will be going to pre-school 5 days a week, starting in September. He would have only had 2 or 3 days a week in UT (IF we could have gotten him in). He will be there for 3 hours a day, and have transportation by bus. The school is only 3 blocks away! There are considerations built in for his light and temperature sensitivities. His behavioral issues. Communication goals. Participation and attention goals. I am very pleased with the outcome. He'll have Physical Therapy and Occupational Therapy (not enough, and no Speech...but I'll take it). The entire meeting, the committee took my suggestions and changed the IEP accordingly.

HUGE battle won: he will be there with a full time nurse, devoted specifically to him and his needs. I still have to go to a Medical Review Board to get our private duty nurses that we have at home able to come to school with him, but the county nurse and the director said that I am more than prepared. They feel that the board will grant this to me for continuum of care. They were kind of surprised to find out that I had already learned about the battle that was going to have to take place and that I was ready for it. See, normally a kid who needs nursing at school has to have a nurse from an agency that has a contract with the district. The have only rarely let in nurses from another agency. Otherwise, the school has to pay Medicaid for the hours, and a huge billing mess ensues. So, I see their point. However, my child is not cut and dried. I need him to be with nurses for an entire day that are familiar with him and all of his seizure types. All of his different rescue meds, which ones to give for which type of seizure. When to give them. To have one nurse for a couple of hours, then go to school for 3 hours with another nurse, who I can't really talk to (because they would be employed by the school), and then come back to another...just wouldn't work. So, HUGE victory on the horizon for me with nursing. Remember this? You might understand why I wanted to hug complete strangers. I was so complimentary to all of the committee members. I let them know that I have been around the block so I could compare..and they did an awesome job!

Another huge battle: The didn't even question the dog. Taking a service dog into school can prove to be a real challenge for a lot of people. When they heard how trained our new friend is going to be, they just put it into the IEP and moved on. I'm certain that this had something to do with it. Thank goodness for pioneers! We won't have those issues, since there will always be a nurse there to act as a handler and 4 Paws provides all of the proper certifications. Still, I'm sure it had something to do with the immediate acceptance that we were going to bring a service dog into school. We'll have to wait and see how it really goes in November, but I got a flat out, "No" last time.

There is more fighting ahead, more battles to be won...but the opposition is not as vicious this time around. My heart carries many battle scars, but it is very full today knowing that I have done something to help better Cole's life.

Spoon Theory

This week is all about awareness.

Here is an incredible story that a friend shared with me, which illustrates what we go through every day. Sometimes, the spoons have run out by noon. Occasionally, having to be a spoon counter for two is draining. The life where wandering Target is a luxury, instead of a spoon thief, is an honest to goodness dream sometimes.

This story shares a bit of how it feels to live life with a disability, but not look sick. Each day is about counting your spoons and using them appropriately. It explains a little bit about why we can't do what everyone else does, when everyone else does.

Always have a spoon in reserve, always use them wisely.
Enjoy!