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.

Dropped Off

Hey Friends-
Sorry it seems like we have dropped off of planet earth.

Our little world has been chaotic, to say the least, these last few months.

The extreme Reader's Digest version:
* Make A Wish was awesome.  Cole struggled.  We had fun in between the seizures and took over 400 pictures
* Cole has been in ICU 3 times and was almost taken via air ambulance to Miami
* I can't count how many times we have changed and tweaked meds
* Normal tonic clonic count right now is around 15 to 20 daily.  Mostly at night.  Never thought that could be normal
*We drove to Florida and stayed inpatient for 6 days.  Had to detox Cole and have some tough decisions ahead
* I don't have lupus!  YAY!  I do have fibromyalgia, and possibly osteo arthritis.  I've tried a few things and think that maybe I found something to help with the pain
* We are taking Cole to Seattle for a week to have an in depth Mitochondrial study done
* Brian and I got to go to Hawaii for a week with my parents and siblings; something that has been planned for 6 months.  By the skin of our teeth and with the help of 7 nurses, two good friends and a pack of teenage boys (our friend's sons), Cole was taken care of.  Sometimes we had a ratio of 3 adults to 1 kid, but it happened and we are grateful!  I have missed my Hawaii home so much
* We don't sleep.  At least for more than 2 or 3 hours at a time
* Showering has become totally optional
* Our finances are more than a little strapped
* Slugger is still awesome
* If you are our friends "In Real Life" we are so sorry that we are neglecting you
* We are glad that we didn't switch jobs last month.  Brian's co-workers have been awesome about our crazy schedule
* I have over 300 e-mails in my inbox
* We got "fired" from therapy because Cole has not been attending over 80% of his sessions (due to seizures, mind you).  I am not sure I have the strength to pull out Tiger Mama and fight this one
* I don't watch TV any more
* I gained 7 pounds in Hawaii and it was totally worth it!
* ESY Summer school started today and I am really pumped about his IEP and the goals for the next year
* It is very hot and humid around here.  Or it is pouring rain
* Cole has a new kiddie accordion and it is hilarious to watch him play it
* Had a Neuropysch eval and found that Cole is still severely delayed in a lot of areas, but has made awesome progress in others
* We are grateful for insurance

There are a lot of Grand Canyon sized gaps in there.  All in all, we are tired, we are stressed, we are still married, we are still happy and trying to find the good in every day.  We live minute to minute and that means things like dishes, blogging and changing our clothes don't happen on a regularly scheduled basis.  Our lawn looks like a jungle, our hair is unkempt, but we are trying to do what is best for our boy.  Sometimes that means just sitting back and letting go of the things that you thought were important and realizing that they really weren't that important at all.  Or maybe I am just trying to make myself feel better about not vacuuming? :)

Peace and Blessings, Friends!  One of these days I will jump back on the bandwagon.

Just How Bad Is Bad?

So things have continued to be a whirlwind around here.  People ask me how it has been going and honestly I don't know what to say.  I don't want their pity or to make them uncomfortable.  Sometimes they don't want to know, sometimes they do...but not all of it.  I probably just say, "Not great" or "Okay".  Translation: Bad.  For those of you who wonder just how bad is bad?  Here you go.

We had a Christmas Miracle, Part II; but not until we went through our personal version of hell.  December proved to be very trying.

The Rocephin shots brought some relief.  Cole was still struggling up to the day that we left for our vacation.  Then he had 5 glorious days.  There was still plenty of myo's and the dreadful nocturnal tonic clonics, but no day time major seizures!  Christmas was not marred by the beast, like it usually is.  Yes, there was still plenty of stress and waiting for the other shoe to drop and behavioral issues and myoclonics and, and, and....but we recognized that we were witnessing a miracle.  A 12 hour journey, including incredible bladder control by Slugger, was completed without incident and there was time with family and loads and loads of presents!  The antibiotics did what we thought they might.  Gave him a little break in the cycle and at just the right time.  We are so grateful.

The daily tonic clonics came back while we were gone.  Then right before we left things settled down again, making us happy but confused.  Even with picking up a cough from traveling, he had an even longer break, 8 days-which has not happened in over a year.  Then things picked up fast and furious.

Re-cap on the last few months:
September-19 GTC's
October-17 GTC's
November-24 GTC's
December-40 GTC's
January to date-18 GTC's

So what exactly do these numbers mean?  It really doesn't seem like they are that high...well, except for that 40.  That number reflects only major seizures.  What is major?

For us, right now, major seizures include most or all of the following:
Loss/altered state of consciousness
Full body convulsions
Drop in oxygen saturation
Need for rescue medications
Lasting over 1 minute
Post Ictal period that includes slowing of speech, sleeping, or Todd's Paralysis
Loss of bowel or bladder function
Post Ictal Blindness

A pretty big list!  This means that Cole is still having plenty of seizures that we don't deem "major" right now.  We don't even count it unless it meets some of this criteria.  So-he is having GTC's (especially at night) that we are not adding to the tally, because they are less than a minute and he doesn't need oxygen or meds.  However, we still have to go through the pain of having our little boy scream in terror, clutch his face and shake all over.  The thing that sucks (pardon my language) is that we can't do a dang thing about it.  All we can do is hold him and let him know that we are there for him; and then not be able to fall asleep for a long time.  He usually goes right back to sleep, me not so much.  This is happening on average 6 times a night.  Saturday, it was off and on all. night. long.  He is occasionally having complex partials right now that we are calling "major", but not as often as in the past.  They are almost always generalizing, so they are still being classified as GTC's.

Cole is still having plenty of myoclonics and other small seizures, lasting only seconds.  Hand tremors, eye flutters, micro muscle spasms, foot drops, little jerking motions.  Occasionally I catch absence.  If I had to ballpark guess, I would say small seizure average is around 700-1,000 a day.  I don't count (or I would be running around all day making tick marks into a notebook).  Some days are okay, some days are horrible and it looks like he has been eating Mexican Jumping Bean larva.  We also know that he is having a lot of myo's in his sleep, some that are not even noticeable unless he is hooked up to an EEG.

So, what do we do now?  We have tried more AEDs (anti-epileptic drugs), less AEDs, dog meds, antibiotics, I guess that it is time for blood pressure meds.  For the record Cole has been on: Phenobarbitol, Levetiracetam, the Ketogenic Diet, Clonazepam, Depakote, Topamax, Potassium Bromide, Clobazam and now Verapamil.  Plus a bunch of stuff that is considered "alternative" or "adjunct" or "supplemental".  That is a lot of meds and treatments for a kid who is not even 5 yet (hooray for a birthday this weekend)!  Verapamil is looking like it is going to be added to the list of failed meds.

Basically I guess it all boils down to the fact that our life is an emergency right now.  If I seem tired, distant, on edge, depressed, silly, don't make any sense, or act down right crazy...forgive me.  I am working on little to no sleep and huge spikes of adrenaline then the crash.  Sometimes I can't even recover before it is time again for life and death situations.  Oxygen saturation at 14% is a true emergency.  Just because we have not been hospitalized during all of this doesn't mean that it isn't serious.  Watching your child struggle and suffer is one of the hardest things in the world to witness.  Feeling helpless is right up there.  We have basically every thing the paramedics have to offer us right here-portable suction, oxygen, rescue meds, pulse oximeter, experience.  So in between mourning the Mom I Would Have Been  (love this article) and keeping Cole alive I have been finding time for a little bit of yoga (hello, Sadie Nardini on YouTube!), paying bills, having a good/decent attitude, driving to therapy 5 times a week, occasionally making dinner, having spontaneous dance parties, finding time to snuggle with my boy and appreciate every day that he is here.  It is pretty rough around here, but he is the reason that I get out of bed every day.  He continues to laugh, entertain me, get into trouble and be the cutest little boy on the block.  All he cares about is making a gigantic list for his birthday.
Top wishes include:
Building a bowling alley in the basement..."With a sweeper mom, a real bowling alley."
Ping Pong Table
Ride On Excavator
Tuba
A real pirate sword
Indoor swimming pool
Saxaphone

Geezo, Cole!  Expensive taste, big dreams.  I wish that I could grant them all, except for maybe that real sword.  Right now, my biggest dream is for me to actually be able to count the number of seizures every day.  Maybe even get to the point where we have a day or two completely, totally seizure free.  Hey, if Cole thinks we can build a regulation bowling alley in our house, I can dream about a day when I can see my little boy get to act and feel like a little boy.

The List

In the last few weeks Cole has had a downward spiral.  For those who have been asking and have Dravet kiddos of their own, here is the list of things that we have tried and the rundown on what has been happening.  This isn’t even the half of it, but for record keeping purposes I will hit the highlights.

October-Cole starts seizing more often.  At this point we have practically stopped using benzos and rescue meds in general.  He has once again become immune to them and we fear withdrawal symptoms.  Also, in prep for starting Onfi.  Only used rescue meds 3 times all month.  We go to Camp For Courageous Kids.  I still need to write about that.  It was wonderful!  Had our first 3 Tonic Clonics in one day.  We stopped Potassium Bromide in late August and the month of getting it out of his system has ended.  Start Onfi.  Largest break in between major seizures was 4 days.  Every seizure looks different.  Different types, different times, different lengths.  There is no regularity or ability to predict what is coming next.  This has kind of been the theme of Dravet, but this year has just been mind blowing.  It makes Sluggers job extremely hard and training new nurses difficult. 17 major seizures recorded.

We prepare for Superstorm Sandy.  End up evacuating anyway.  We were gone for 5 days.  Drive 14 hours home.  The next day, Daddy leaves for NYC to help with the aftermath.  He is gone for 2 weeks. 

November-Get a small break when we increase Onfi.  Have 7 days with no major seizures.  Then things get hairy.  Daddy is still gone.  Have a nurse quit and so only have coverage 3 days a week.  Start Anat Baniel Method Therapy.  It is a very slow process with Cole and his sensory issues.  He doesn't like strangers to touch him.

Cole starts having at least 2 tonic clonics every day.  Nothing is stopping them.  Onfi, double Keppra, and rescue meds are hardly working when we use them.  Still using all rescue meds and double Keppra sparingly.  Cole starts having major regressions.  Reverts back to oral phase, acts a lot like an infant and starts sticking every thing in his mouth.  Has some potty accidents.  Loses some of the songs he knew before.

Brian comes home and the next day we leave for Miami.  Read about our Florida adventure HERE.   24 major seizures recorded, not counting nocturnal.

December-We drop the rest of the Onfi.  Cole finishes his amoxicillin on the 1^st.  We get ready to start Verapamil.  Want to go back to school and get settled into routine before we start something new after all of the travel.  Silly us.  The 2^nd reintroduces daytime TCs.  It is so weird how he has a honeymoon every time he is on high dose antibiotics.  We start a love/hate relationship with 911.  We call them at least once a week all month.  If you know us at all, you know that it is totally abnormal for us to get to our breaking point so often.  Cole continues to live his legacy and stops seizing once we call, or once the paramedics show up.  Whether we wait for 29 minutes or 8 minutes, the story is the same.  It does not work if we pretend.  He knows J We have to be serious and dial for real.  We start the Verapamil.  Cole catches a cold the first day he goes back to school and shares the love with Mom and his main nurse.  We stop the Verapamil, after one whole day!  Still not sure if it works for him, but we couldn’t know while he was sick.  Also didn’t want to take the chance of a major drop in blood pressure when he was ill.  We take him to the doc, strep negative, flu negative and throat culture is negative. He loses his voice and looks horrible, but still has some stamina.  The entire month the longest break he has from tonic clonics is 2 days, and that only happened once.  The myo’s abound.  The TCs ramp up from 2 a day to 3 a day.  Every single day.  Cole regresses further and does strange infant-like behavior like chewing on his feet and licking the floor.  We try double doses of Keppra, since that helped on the airplane in Florida, kind of.  It helps maybe 1 out of three tries.  Mom gets super sick and wants to curl up in a ball and hide.  We don’t have nurses, so this makes things interesting.  Cole, per his M.O. continues to be sick, for a long time.  At this point, Cole has been de-sating to the 30s and 40s during major seizures and will hover for minutes even with 5 Liters of oxygen.  He is congested and occasionally coughs, but it is just a virus, right?  We throw around the idea of possible pneumonia.  I am talking to the pediatrician daily. 

It doesn’t matter what we do.  If we use rescue meds, the seizure doesn’t stop.  When we used to administer medication like Diastat or Versed, at least it helped to prevent future seizures that day and would give him some sort of a break.  Cole is seizing again within a few hours, even with Diastat.  Has 26 major tonic clonics (this is not including the short nocturnal ones) in 12 days.  During all of this we call Dr Miller.  He suggests that we start Bromide again for a short-term solution.  We know that he broke out in a rash about 2 ½ weeks in to it before.  So, back to dog medication we go.  Immediately we notice that Cole’s speech declines.  By the second day, he is slurring his words.  By the third day, he is drooling even without seizures. We are just looking for a short-term solution.  Something to just break the cycle of seizures.  We know that Cole can’t handle long term Potassium Bromide.  We see our son slipping away from us.  Call Dr Miller again.  Don’t want to wade into any more old medications.  We could start increased eye fluttering, maybe even those evil drop seizures could come back?!  Things are already bad here, why would we want to possibly make it worse?  So, we get into “illogical and completely bizarre” territory.  Discuss things like IVIG or prednisone.  Heaven help us, ACTH comes up.  Also high doses of antibiotics…to control seizures.  Illogical.  Remember how Cole had a honeymoon with the Amoxicillin?   As bizarre as it seems, some kids with Dravet have decreased seizures on high doses of antibiotics.  There are side effects, but it is less risk than steroids.  So-we decided to start 3 days of 1000mg Rocephin shots, that day.  Cole gets 6 huge shots in the behind.  Fun...not really.  Dr Miller wants to keep up the Bromide for a week and we talk about steroids as the next approach.  By now, we are on the fourth day of Potassium Bromide; Cole can barely speak at all.   He is drooling like an infant and does not want to eat.  His gait is slowing.  He is grabbing his face before a seizure, going tonic and then scratching himself.  He looks like he has been in a fight with a rabid raccoon.  Perfect for those family pictures next week.  Brian and I decide to take him off Potassium Bromide.  This entire time we are vacillating between deciding to go or not to go home for Christmas (cross country flight).  The next morning, Cole wakes up shaking like I have not seen him for a long time.  The tremoring and myoclonics are so intense that his whole body is involved.  Almost into tonic clonic territory.  We wonder if it is due to this, due to that.  Always having to play detective.  We give him a double dose of Keppra and 5 mg of diazepam.  Decide to continue with the antibiotic shots.  I say, "We are not going home".  Cole improves throughout the day and regains some speech.  He still sounds like a drunken sailor and cannot say the ABCs, but hey…he is talking!  We’ll take it!!!

The entire day of the 2^nd antibiotic shot, he does not have a tonic clonic.  We are still holding our breath, but so grateful for the small break for our child.  His color starts to come back; he doesn’t look like death warmed over.  Day 3 of the antibiotic (today), at the time of publishing, he has had two big seizures.  Better than 3!  So-if you really feel like nothing is working and your child just keeps clustering no matter what you do,  go out on a bizarre limb and try high doses of antibiotics.  Or maybe not.  It is not a long-term solution, but worth a shot.  I think.    31 major seizures recorded, not counting nocturnal, and we have 11 days left.

 I still don’t know if we are going to go home for Christmas.  But really, what if this is his last Christmas?  Won’t we regret staying just because we were scared?  Our life the last few years has taught us to live to the fullest.  So we will probably put him in a drug-induced stupor, board that plane and hang on for dear life.  Who needs performance enhancing drugs, bungee jumping, marathon running and rock and roll?  Just get a child with Dravet Syndrome and you can have all of the adrenaline rushes you could ever ask for! J

Our Florida Adventures

We had our 6 month visit with Dr Miller scheduled for November.  We decided to move it from the regular clinic day and combine it with our Thanksgiving break.  Two birds with one stone! 

Before we even got to the hospital, we had all sorts of drama.  Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying.  Somehow taking care of a seizure at 30,000 feet isn't so easy.  Landing the plane, also not so easy.  We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight.  God has a sense of humor!  Cole made the flight, but had a severe seizure at baggage claim.  We were quite the sight.  Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on.  Hey-he didn't have one ON the plane!  The next day he was so bad that we considered calling 911 and going to the local hospital.  However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day.  We didn't call, Cole made it through the night.  We got up the next day and headed 3 hours south to Miami Childrens Hospital.

While we were there, Cole had his first sleep study.  Results show there is no major change.  He is still seizing throughout the night.  No sleep apnea though, hooray!  We discussed with Dr Miller the increased frequency in tonic clonics and myoclonics.  Cole had not been sick lately and we felt like we had a baseline established, as fluid as it was.  Bottom line was, we knew that the Onfi wasn’t working. 

Dr Miller, as great as he is, basically tells us during our appointment that we are running out of options.  Which we kind of already knew, but it is hard when one of the best doctors in the country for what your child has, tells you that he can’t help you.  Cole has tried 7 or 8 meds at this point and has failed them all except Keppra-which we really don’t think is working very well anyway.  So we decide to get off of Onfi.  Next stop, Verapamil (a blood pressure med of all things).  You know we are all about Plan A, B, and C…so after that, it is time for Stiripentol or revisiting old meds.  We discuss alternatives such as VNS, medical marijuana (which is illegal where we live), IVIG, steroids such as ACTH or prednisone.  He wants to see us in 3 months.  Okay, now things are really getting real.  On the day we visit Dr Miller, Cole has three tonic clonics.  He also seems really sensitive to light.  Much more than usual and is hiding his head under a blanket.  I will say again, seizures in the car, on the freeway are definitely ranked in the worst top 5 places to have your child seizing.

The next day all hell breaks loose.  Cole has 4 tonic clonics and was basically in NCSE (non convulsive status epilepticus) the entire day…we just didn’t know it.  He is inconsolable and we can tell that he is in terrible pain.  He is actually complaining of eye pain.  For a kid who has run around on a broken foot, twice, this is huge.  The light sensitivity is very intense and he wants his special glasses on even indoors.  We try a double dose of Keppra, Motrin, Tylenol…nothing is working.  We contact Dr Miller and tell him we suspect a migraine.  He tells us to give a combo of Benadryl and Aleeve.  By tonic clonic #3 we are getting anxious.  We give Versed, it doesn’t help.  Cole can’t hold up his head, is drooling profusely and can barely speak.  Yet, he doesn’t want to be left out.  The boy is adamant that he is a part of the holiday party and refuses to sit out in the car with me.  So I take him inside and he sits on our laps, wrapped in a blanket as we eat and looks the definition of disabled, which is rare for him.  But he is there and he breaks out a crooked smile; such the definition of resilience.  At TC #4, it is evening and we call the on-call neuro, who told us she was extremely nervous and wanted us to come in.  It is never reassuring when a neurologist admits to you that they are nervous!  We explained that we were 3 hours away and would have to be Life Flighted, which could take over 5 hours from start to finish since we had to go through the local ambulance, hospital, etc.  She agreed that it could take too long.  Getting through to a new hospital that doesn’t know us and doesn’t know Dravet takes forever.  By the time they believed us enough to call Miami and get the go-ahead, it could be hours.  Remember he isn’t actively seizing at this point so to a regular doc, he would look fine.  She suggested that we actually get in the car and drive down.  At the end of the conversation she gives us instructions to give him Diastat and a double dose of Keppra.  If he has another, we are to call AirMed and get down to Miami.  No matter how inconvenient it is.  The Diastat in combo with the other meds settles Cole’s brain to the point he can sleep, just through the night.  It also tips us (and Dr Miller) off to that his supposed “migraine” was actually bizarre seizure activity.  Since pain relievers did nothing for it and a benzo did, it was probably seizures.  Weirder things have happened with Cole.  Add it to the list of "rare".  Most regular people would sleep for a day or two with all of those medications in their system, not our Mini Hulk!  He only got a 7 hour nap.  We truly experienced a miracle though and made it through the night.  I really didn’t want our first helicopter ride to be in a different state and take a couple of hours.  Thanks divine intervention! J

Those meds carried over and he did not have a major seizure the next day.  However, we got a new surprise at night.  Cole started having major nocturnal seizures.  Tonic clonics that last from 30 seconds to a minute.  He will sit up in the middle of the night, grab his face with his shaking arms and have full body convulsions.  We can only hold him and tell him that we will be there for him.  They are too short to drop his oxygen and don’t need meds.  However, it gets my brain kicked in to overdrive and I just lie there awake, waiting for the next one.  One night he had 9.

The next day, I had my mommy instinct telling me he might have an ear infection.  Mind you, there was no complaints of pain, no major fever, no pulling of the ears, no lethargy, just a hunch.  We took him in and BAM, both ears were infected; they started him on  Amoxicillin.  The rest of our Thanksgiving break was full of nocturnal seizures, but he had a break with daytime ones. 

I was so ready to go home.  I wanted our routine back.  There were rumors flying around that Brian was going to be sent back to New York which stuck fear in my heart but I knew that I had a back up plan for support and we could really use the money.  The hurricane, him being gone, Miami, the holiday and all of these seizures were getting to me.  So, we were grateful for the break from daytime chaos.  Well, at least where seizures were concerned!  We had a great time with our cousins and other family members that we don’t get to see very often.  Plus, it was 80 degrees the day we left!  Is 32 too young to become a snowbird? J

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 ;)

IRL

Welcome to the first in a series of VERY picture heavy posts.It is always great to meet with my Dravet friends "In Real Life". Some have been friends for years, others this is our first interaction.
All are special. These are some of the people who can read me like a book.
Some of the people who cheer/roar for us when we accomplish even minor things.
Or understand my twisted sense of humor, because most of them have the exact same dose of sarcasm.Some come from far away places-We had people from Australia, Austria, Ireland, Israel, Mexico, Cyprus, England, Africa, a crazy big group from Canada and other countries represented this year!
Some are from your backyard. Some are so sweet that you want to pack them up and take them home with you.
The children especially leave huge marks on your heart. I love these two.
Some have an alarming amount in common with you.
But with all of them...you feel a whole lot of love. This is my favorite part of the conference. Making connections. The internet is awesome, but I will always prefer to "friend" someone IRL.

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!

The Day We Should Have Won An Emmy

Category: Best Drama

No, really...we had an episode of ER in our living room. Also, Dear Lisa-be prepared to laugh.

Set the scene-After a torrential storm that left millions without power, the streets are strewn with carnage from the trees that are plentiful. A house down the street has a hundred year old oak in their garage. The family car is ruined. (side note: *cough* the storm was four weeks ago, but we are being dramatic here :) back to the story) The father, we'll call him Brian, goes out to the yard to survey the damage and finds part of the fence has fallen down and there is a 20 foot limb that graciously left his family unscathed in his back yard. He heads out with a shark tooth hand saw, to make the clean up more manageable.

The sexy, intelligent wife, Niki (Hey-I can be dramatic too!) starts to clean the inside of the home. Keeping watch over their child, who wants nothing more than to be out with his father. She has to run outside to bring him back, twice. She carries him in, saying that it is just too hot for him. So she locks the door to put one more barrier in between him and the outdoors.

She goes about her work and suddenly hears a desperate pounding on the door and screams from the outside.

Brian: Open it! Hurry!

Niki: I'm coming! I'm coming!

She sees blood streaming down his legs, gushing between his fingers. Has a brief flashback of an incident where her father accidentally cuts his face open with a chainsaw.

Unlocks the door and throws it open. Brian staggers into her arms. She leads him to a seat in the kitchen.

Niki: Breathe! Just settle down and breathe.

Brian's head lolls to the side and snaps back up. He moans.

Brian: slurring-I'm okay.

She grabs towels and removes his hand to see that there are multiple small cuts. There is blood all over her hands. She applies pressure and tries to slow the bleeding. Knowing that her husband is prone to fainting at the sight of blood, especially his own, she tries to keep him talking.

Niki: Stay with me!

Brian's eyes roll back in his head, his face is ghastly white and his breathing is fast. There is a noise in the background.

Brian: He is seizing!

Niki has to make a decision, lead her husband to the floor in case he passes out, or run. She chooses to run.

Brian: Slurring-I am okay. Get him.

Niki runs to her son who is having a seizure and scoops him up. She races to another level of the home where the oxygen is located. His face is blue. She tries to wipe her bloody hands on her pants. As she attends to the seizing child she continues to try and talk to Brian, who is on a different floor, making sure he is conscious. The only response she gets is moaning from above. She sets the little boy up with a pulse oximeter and prepares rescue medication. She chooses not to use it, since it looks as if the seizure is going to stop on its own. The seizure lasts for an agonizing 4 minutes. As she attends to the child, her extensive training is guiding her instincts and she is calm and efficient. After it stops, she makes sure he is okay, lays him on his trusty Service dog and runs upstairs to check on her husband.

Niki: You okay? Just don't look at it.

Brian: I almost passed out.

Niki: I know. Just hold this here okay?

She runs back down to the child, who is conscious and asking to watch television. He seems to have incredible strength and tries to stand. He wants to see his dad. She carries him back upstairs and situates him on a sofa, out of sight of the carnage in the kitchen.

Niki doctors Brian's leg, that is so sweaty it is hard to get a bandage on it. There are multiple small, shallow cuts and he will not need stitches. The cuts are starting to clot, so the bleeding is slowing, mingling with the sweat. Even wiping it down with a cloth is not enough to properly get a bandage on. She asks if he can stand and he nods. She leads him upstairs to the bathroom. She grabs the child, calls the dog and situates them on the floor. She proceeds to help bathe her wobbly husband whose color has returned. After the water drains, she doctors the leg again and helps him out and into the bedroom. She places the child on the bed while Brian dresses.

Niki: *sigh* We all just need to take a break. *laughs*

Pan out-Return to scene of Niki three hours later eating stale cheesecake and watching the Olympics.

Brian: *from a distance* NIK!

Acknowledging the cry, she runs into action.

Niki: Seriously? Again?!

She runs downstairs to find the child seizing yet again, this time harder and longer. Oxygen dips, the child is blind. Meds are administered...twice. There is tension in the air, but the team is efficient. They even work with the dog, commanding him, training him to bark and rewarding him with hot dogs.

Brian: This one is bad.

She nods her head and agrees.

Niki: Poor kid.
Mommy's here. I'm here sweetie. I'm going to help make it better.

The two work together as a great team. Brian runs back and forth for various things. After ten minutes, the seizure stops, rendering the child drooling profusely and unable to speak for an hour afterwards. The parents attend to the child who remarkably has great motor skill control.

Niki's stale cheesecake decides to attack her digestive system and she clutches her stomach, runs into the bathroom and shuts the door.
Close scene.

Open on lights going out in the house. Scan every one going to bed after hugs. Their faces look hopeful for a better day tomorrow.

Music plays in the background. Fade out.

No one could make this stuff up.