Regression

Medical Dictionary

regression  re·gres·sion (rĭ-grěsh'ən) Noun

1.  A subsidence of the symptoms of a disease.
2.  A relapse of symptoms.
3.  Reversion to an earlier or less mature pattern of feeling or behavior.
4.  Relapse to a less perfect or developed state.

I have not been really up to date with Cole's condition on this here blog.  Although I try to keep it real, I don't write about every thing that happens in our lives and every thing that I am feeling.  It will stay that way, since the majority of you are people that I have never met.  However, sometimes I feel like it is important to be honest about the reality of Dravet Syndrome.  I think that it helps to know that someone else out there is going through the same things.  Feeling the same frustrations.  I try to be positive and funny most of the time but in the end, this is my reality.  


The truth is that the last few months have been kind of a hazy blur, punctuated by seizures and watching our little boy slip away.


Dravet spectrum disorders are regressive.  Children with Dravet Syndrome often regress and lose skills.  Sometimes they regain them, other times they do not.  Things can be fine and dandy in the developmental region and then one day, one seizure amongst hundreds, can take away their ability to talk or their ability to walk.  You just never know where and when and how.  It is the how that is the most frustrating.  These kids can have a 3 hour status seizure, and be just fine afterwards, but it is a 3 minute seizure that ends up sending them to heaven.  The unpredictable-ness (is that a word?) of it all drives more than one parent to this side of Crazyville.  Me included.


We have just stopped recording seizures.  It is not the smartest thing to do, since you need to recall the last time something happened.  But in all honesty, it is just downright depressing.  How many, what meds, when did we call the paramedics, what did it look like, how long....it gets to be too much.  When we were asked how many on average we thought he was having per week, we just had to shrug our shoulders and lift our hands in the air.


The last six months have been more than a roller coaster.  The ups and downs have made me want to beg the operator to let me off of the ride, so I can lose my lunch by myself, and not in front of everybody who is watching.  Alas, I am in it for the long haul.  December was incredible, a true miracle.  We said that there were angels with us, one named Slugger, and we have only gained a deeper appreciation for that little respite.  January invited the tonic-clonics back into our world and then it just kind of went down hill from there.  February someone was sick the entire month, and Cole only attended school a handful of days.  March things picked up and the myoclonics were forceful.  The eye flutters showed up on a daily basis, but were to the point that I could count those particular seizures.  I remember talking to a friend during the National Walk for Epilepsy about eye flutters and commented that my son's had never been as bad as her son's.  I just watched in amazement at this little boy, who looked like his eyes were constantly rolling and his eyelashes were batting up and down so often it kind of made you dizzy, and thought, "At least we don't have THAT problem yet".  I set myself up.  


April was more than interesting with a couple of trips to the hospital and an ICU stay.  However, there was one 35 minute seizure that changed it all.  Not long in length, considering, but after that particular seizure Cole took more than 2 steps back.  He slid, like he was on a slippery slope and had lost his footing.  Bouncing down the hill, his speech took the biggest hit.  He started to stutter-really bad.  He has regressed and reverted to oral phase and is sticking everything in his mouth-like an infant.  I even had to physically move him because he kept chewing on a table in a restaurant.  He is particularly stuck in the phallic phase and is constantly touching himself and exploring.  Not so great when you are in pre-school.  He is back to toe walking, giving himself propioceptive pressure.  He can not even go to the bathroom or take a drink, without seizures interrupting the most simple tasks.  He can not communicate his desires very well and it makes him very frustrated.  Brian and I would watch videos of our little boy, from February, and we would just get sad.  Our smart, witty child was completely different.  Here we are near the end of May and these skills have not come back.  Before, he has always bounced back to baseline within 4 days.  It has been over four weeks.  Cole is 4 and a half.  Almost to that magic number of 5 years old when most Dravet kids start to plateau.


May has been full of new seizure types.  Ones that have no warning or leader seizures.  We have been plowing through rescue medication like a kid at a candy store with his allowance clutched in his fist.  Every day we walk an extremely fine line of, "Should we?".  The meds have been losing efficacy, but it is obvious that he needs them.  At this point, Cole is constantly seizing, going to seize, or recovering-so he smells like a seizure the entire time.  Even if I try to bathe him after a tonic clonic.  Slugger has not alerted in over 3 weeks.  It is like going into a house that reeks of garbage, but by the end of your visit you don't even notice it.  Slugger is so used to the smell of "Seizure Cole" that he can't do his job.  It is heart breaking.  Even though he is a wonder dog, he is not a robot.   


I will do a more in detail post of our Miami findings and new action plan later, but the bottom line is-Dravet has proven to us, again, that it can always be worse.  Comparative to Cole's EEG from last year when he was having 70-200 seizures per day, he is now having 200-400 per day.  On some days, I am sure we rocket into the thousands.  


It is so hard to watch your child struggle and be totally helpless.  You know in the back of your mind that you are doing every thing humanly possible to help them, but you still hate to see them suffer.  


In the midst of it all, there have been some great little moments.  This kid is a champion and he teaches me about strength.  He will still blow me away and do crazy things like singing the alphabet for the first time, ever.  In this period of strife he has been able to count to 10 without skipping a number.  Little things have become giant things and we so appreciate them.  We jump up and down to celebrate milestones that others might take for granted.  In between the bouts of Keppra rage and the calls to 911, this boy has shown me that I can never underestimate him.  Put no expectations on him.  Even if I think it can't get worse, and I know that it can, he proves to me day in and day out that he is a true Mini-Hulk.  So, in between all of the bad-we try to be happy.  There are days of tears and more days than I would like to admit where I just wish that I could crawl under the covers and hide.  He gets me moving though, my little boss.  If I am late for work, he will definitely let me know.  Crawling in with me and snuggling in between the twitching.  A bittersweet 4 am wake up call.