Suffering

I haven't been able to get the word suffering out of my head recently.  It just follows me around like a real-life version of Jiminy Cricket, constantly there, unable to shake, just lingering.  Every time I watch her seize, when I see her confined to a chair, when she is laying in the same spot on the floor, as I lift her from point A to point B, essentially all. day. long.  The mental follow up thoughts are why, and for how much longer?  It really is such a delicate place to be, unable to comprehend life without her in it, and wondering when G-d will end-all of her pain and suffering so she can actually be able to truly rest. 

I often wonder what she must be thinking and experiencing herself.  What does life look like through her eyes?  We don't get the opportunity to know her thoughts or feelings.  We assume the majority of what she is communicating.  We make unthinkable decisions on her behalf.  Her body does the same thing on repeat daily, with only stopping if she is sick.  Days full of seizures and the aftermath that they bring.  Medications that I am sure cause side effects she doesn’t even complain over because it is her norm. She is forced to experience constant seizures that are unable to be controlled and unwilling to give her an opportunity to truly participate in life. 

It breaks my heart to watch her suffer like she does.  It breaks my heart that we have failed to bring her any type of relief no matter how much we have done or how much we have tried.  It breaks my heart that there is not a single thing we can do to stop this vicious cycle of attempting a remedy and failing miserably or sometimes less miserably.  It doesn’t help and I don't want to be told: "she doesn't know any different" because that does not make it okay.  It does not make it justifiable.  It does not make me feel even an ounce better. And most importantly, it does not reduce any of her suffering.

Now what?

Prior to the official CDKL5 diagnosis, we were told by the epileptologist who originally read Sonzee's EEG that she was most likely not going to outgrow her seizures.  At the time it was Sam who was told this when he asked him if he thought she might.  The doctor never went on to explain why he felt that, nor did Sam push for clarity.  I took that statement to mean the reason behind her seizing wasn't "a good one".  When she gained the CDKL5 diagnosis, we feared her getting the infantile spasm diagnosis, but held onto the fact that at the time she had only 50% chance of them occurring.  Sadly, it wasn't her that was spared.  Although we didn't have any sort of seizure control it was during and then after failing the specific infantile spasm treatment that I feel like we started losing this battle.

For close to 5 years we have made every attempt under the sun to try and alleviate some of Sonzee's seizures. We have failed a ridiculous amount of medications, had a device implanted, attempted CBD and THC with her very own medical marijuana card and knowing it most probably wouldn't help, still tried the CBD that became FDA approved last year.  Don't get me wrong, everything we have done has in some way made a slight difference, we have achieved some minor victories with these little CDKL5 wars, but it just isn't anything substantial enough to allow her to gain skills or not suffer all the time from constant seizing.

This past August for the first time in her life I said, "no more".  No more to the "maybe it will work", no more to the "let's just see", no more to the "we don't know", no more "trying it out".  After close to 5 years I know how this game works.  We had enough history to say "no more" was a completely educated statement.  However, when you aren't alone on a journey like this it takes both parents to say "no more".  Sam wasn't quite on board with what he calls giving up.  He wasn't quite ready to throw his hands up in the air and say we have given it our all, and so despite my better instincts I said "One more time, and this is it.  We give her a hardcore med and you see that it won't work and she will lose her head control and then that is it, we are done."

As of Thursday last week our epileptologist said, "if it isn't working, wean it as slowly as you started it".  So here we are, like I anticipated with just another medication/combo failed.  There is no victory in "being right", in "knowing" this was going to be the outcome.  There is just pure defeat, sadness, and anger that her CDKL5 diagnosis continues to prevail.  It continues to wreak havoc on her body and especially her brain.  It continues to not cut her any slack or let her have a victory.  It just leaves us all sitting here wondering..."now what?!"

It's been 4 years....

It's been 4 years and yet I was caught off guard on Friday.  I would like to say this is rare for me, but for some reason this past week, I have been experiencing all sorts of whacked out crazy sensitivities and emotions.  Maybe it is the accumulated exhaustion of participating in this journey over the last 4 years?  Maybe it is the fact that I prefer to not deal with a lot of my emotions because I tend to write a blog post about how I am feeling in that moment, press post, and then move on.  More often than not that way of living has seemed to work best.  But then there are those moments, like Friday where three concepts slammed into me at full force despite the fact that I have dealt with them multiple times over the last 4 years.

It became extremely clear to me on Friday that I am not over Sonzee receiving her CDKL5 diagnosis.  So for those of you just starting out, 1 year, 2 years, 3 years, 4 years or even more into hearing the string of characters "CDKL5" it is completely normal if you have yet to accept its fate or if today it is just clicking what it might actually mean.  As I sat with Sonzee's epileptologist and she answered the same exact questions I have asked every PEMU stay since 2015, on Friday, it clicked.  Even if we gain some sort of control of her seizures, which we all agree she most likely won't ever be seizure free nor will she likely ever be 90%, it won't change her background and it won't change the fact that CDKL5 is the reason she is able to do what she can and not able to be typical.

This led me into the 2nd revelation; the one where it becomes clear that even though I don't speak the words and I don't put much faith into it, somewhere in my soul I still believe there is hope for her, because it is during moments where I feel the wall slam into me at 500 miles per hour that I realize the slamming feeling is because I was obviously holding onto some sort of hope.  The hope that maybe one of these PEMU stays it will reveal she does not have an abnormal EEG background.   The hope that one of these PEMU stays will reveal she isn't seizing unless we notice and hit the red seizure button.  The hope that one of these days she will wake up and be typical.

Which led me to the final revelation that we are never going to fix her.  We appreciate who she is, we love her the way she is, but honestly, if you told me a specific amount of money would make her be able to become a typical child, I would pay it plus a tip.  I do not know why all these 3 items became clear on Friday.  I have heard the answers before, I am sure of it, and I do not know why, but for some reason, it all clicked and since then it has been weighing me down like a ton of bricks.  I am having an extremely difficult time comprehending that nothing we do for her will ever make her better.  No medication is going to stop her seizures, no medication is going to clear up her background, and no medication is going to fix her...but for some reason knowing this we still cycle through medicine cabinet trying to find the answer....and it's been 4 years.

Rerun

We are more than halfway finished with weaning one of Sonzee's seizure meds.  There is always the initial joy of watching skills return to her that we had somehow forgotten she once had, then there is the brief, but still, present sorrow that presents itself when we realize our choice of medicine is the reason the skills were put on hold.  Pair that with the fact that her seizure presentation was not significantly reduced or impacted by the medication, and knowing that our PEMU stay is going to present another medication as the (what is most certainly not going to be a) solution, and well, that continues to be Sonya's story.

This cycle of repetitious history you would think would make us wiser or at least pave the way to a clearer outcome, but for some reason, our continuous game of groundhog day meets real life is not changing.  Then there is the worst part that we somehow forgot happens when Sonzee is in a medication fog and it becomes temporarily lifted, her endless battle with her GI system.  The whimpering and pain that had seemed to subside, that we were optimistically thinking her gut rest had aided seem to be popping back up here and there.  The Aha moment always catches me off guard, takes me a day or two to actually realize I am entertaining and then smacks into me like a ton of bricks.  The question presents itself, "Was the gut rest and TPN the answer to her pain, or was the increase in her seizure medication masking her ability to process it?".  This answer, like every other one that is asked that would require her to be able to give us the answer, will always remain one of those unknowns.

The potential defeat that would come if the answer is the medication was masking her response to the pain will be so soul-crushing I am not yet at a place to fully even entertain it.  The potential disappointment that would follow if the answer is that the solution was yet again another failed bandaid will just be completely deflating.  Either way, the situation remains "wait and see", the question will soon enough become, "now what? ", and the answer will be whatever is feeling best for us to do for her at that time.

When?

I feel like this April, in general, hit me like a ton of bricks.  Deep down I know the reason is that we have been on this journey for 4 long years and even though each minute brings on something slightly different, the meat and potatoes are always the same.  It is the same race for a cure, the same challenge to find seizure control, and the same tight rope walking of managing a nonverbal 4-year-olds quality of life. The years seem to go by, the medicines and equipment change here and there, but the routine of it all stays the same.

Honestly, it is quite daunting.

It seems we are always trying to find the perfectly shaped bandaid to cover whatever difficulty Sonzee is facing, yet each time I feel like we are living out a real life version of one of those arcade games where you have to hit the chipmunk as it pops out of the hole with the rubber mallet.  Each time we manage to get one chipmunk back down underground, sure enough, the next one is popping up.  Sometimes I am quick enough to smack the chipmunk head on, a good portion of the time I maybe nick the side, but the majority of the time I am completely off the mark as I hover wondering which of the holes the chipmunk will emerge from.

Last night while dinner was warming in the oven, I was finishing up with TPN preparation, my sister and her family were hanging out waiting for the rest of my family to come over for dinner, and Sonzee was in her ppod, when she started having a 19 min and 50-second seizure.  That was not her first seizure of the day either, however, it was her longest by 5 minutes.  I stood next to her videotaping for the 10 minutes the seizure tracker app allows me to record, sent an email asking them to consider expanding the length of videos that can be saved on the server, and waited next to her until the entire 19 minutes and 50 seconds had passed.  Then, as if this is normal, because it is our normal life continued with getting her washed down and dressed for her TPN connection, yet as usual, I was left wondering what kind of life is this for a child, why does she have to endure this, and when is enough, enough?

Butterfly Effect

While I don't regret any decision that we have made for Sonzee, I do often wonder how a different one could have maybe, possibly, affected her presentation with CDKL5.  Deep down I know that really the impact of severity lies mainly in how the mutation itself blends within her body, but it doesn't stop me wondering about "what if".  The challenge I have with "what if" is far back do I go?  Where exactly does my one small change begin? 

While the obvious choice would seem to go back to around the time her mutation occurred, for this specific exercise it isn't the ideal choice.  I need her to have the mutation in order for me to let this alternative "choose your adventure" book to unfold.  With the intention clearly outlined I would go back to our headstrong desire to wean Topamax.  The drug that we understood only afterward was also referred to as "dope-a-max".  The drug that we also learned mid-wean in some children can actually keep the brain activity clear of hypsarrthymia.  The one diagnosis we prayed she would never receive because that would mean she fell victim to x-linked dominant infantile spasm syndrome-2.  That diagnosis was listed on the right side column of her genetic report that I had specifically asked her doctor if that meant she would have.  The one that her doctor replied to with, "I would like to think not", and yet, we knew she had at least 50% chance of developing due to the fact that CDKL5 is an early infantile epileptic encephalopathy-2. 

Had we never weaned Topamax would her EEG background never have developed into hypsarrythmia?  So many spirals down the rabbit hole came from that one diagnosis.  Would she have gained more skills vs the regression that we never noticed until we looked back on pictures of the skills we had forgotten she once acquired?  Alternatively, would she have never emerged from the fog that we didn't realize she was in due to that same drug? 

Even though it practically went hand in hand with the date of her last dose and when her background shifted, I suppose we could say she was bound to get hypsarrythmia regardless?  Maybe it wouldn't have mattered what we did because she was meant to be the 50% to keep the statistic what it is?  I really do not regret our decision to wean Topamax, we did the best we could with the information we had at the time, and I will chant that mantra for the rest of my life.  But I would definitely love to know if we would still have the same Sonzee and the same outcome of her EEG background with just having gone through a slightly different journey

Keep on moving

3 years 5 months and 11 days ago Sam and I made the "controversial" decision to start our then 7-month-old baby Sonzee on her first dose of CBD oil.  I remember giving her the oil via a dropper into her mouth under her tongue a couple of times a day, and especially while she slept.  I remember the fear of dosing her incorrectly, the initial skepticism over whether it would work, and the curiosity of whether it would actually work for her.  I remember being cautiously optimistic, but at the same time, there was a very large part of me waiting behind the scenes to pull the cord that sent the room into a full-blown celebration when it would be the answer, HER answer.  I remember the initial feeling of defeat when that was not the outcome, HER outcome.

Over the course of 2 years, she would try multiple brands of oils, pastes, and types.  After each unsuccessful attempt, we were hit with mixed emotions.  Was it the brands we were choosing? Was it the dosing?  Was it the type?  Was it an allergy to the carrier oil/base? We felt disappointed because we felt surrounded by so many success stories, why couldn't she be one of them?  In my dreams, I planned on purchasing a billboard to join the bandwagon of spreading how medical marijuana was medicine, how it really does work, and how much better it is than pharmaceuticals.  Yet every time we found ourselves let down, trying to rationalize why it didn't work.  Then someone would share their success with another brand and we would talk ourselves into trying it again.

For the majority of 2018 we said we were done with any CBD oil, but then Epidiolex came to the market.  The jury was inconsistent even among kiddos with CDKL5, but it seemed again the vast majority who were on the trials had amazing success, so naturally we had to try it.  The day the FDA approved doctors for prescribing Epdiolex was the day Sonzee's epileptologist wrote the script.  With eagerness and anticipation, she too was curious and excited to see how Sonzee would do, we were her first patient to finally get it and start it in December.  As usual, I didn't allow my mind to run too far off into the land of CDKL5 miracles, but I definitely put more than one egg into the basket.  Which is why my heart is hurting and feeling a heavy-weight as we are in the process of weaning what was her "hail mary".

I wish I could convey in words to those of you not parenting a child with refractory epilepsy exactly how it feels to know there is absolutely nothing you can give your child that will ever stop her seizures.  I wish I could express the heavy-weight mixed with airlessness that resides in my chest over the fact that nothing will ever work, but yet we are incapable of not trying more cocktails, more useless combinations of pharmaceuticals, or potential new hail mary's that will pop up along the way.  I wish I could adequately explain the pain and suffocation that never goes away because as long as she is alive she is suffering multiple times a day for 10+ minutes each time and there is nothing we can do for her.  Nothing exists to correct the awfulness that ONE little misspelling on ONE gene has caused.

Sadly, our chapter with CBD is coming to an end.  Part of me doesn't want to believe that, and the other part of me says "just let it go."  It has nothing to do with her age, with the brand, with the dosing, with type, and/or with the base.  It is just like every other epileptic medicine (natural or not) that works for some and doesn't for others.  Even though we have been down this path before with so many medications, breaking up doesn't get any easier.  We will eventually get over this loss, it will take us some time for us to allow ourselves to believe something out there will work.  But eventually the disappointment won't feel as fresh and the optimism (while never as high as it once started) will slowly build its way back up, and no matter how many more times we will inevitably find ourselves traveling down the same exact path, we will do it with a smile. Because, as Albert Einstein said, "Life is like riding a bicycle.  To keep your balance you must keep moving."

If only

It was "one of those days" yesterday.  Sonzee's seizures were nonstop, she cried when she wasn't having them, she slept after she had them, she was in visible pain when she was awake, and she was having a very difficult GI day.  All in all, by 5pm I was trying (unsuccessfully) not to cry by my desk and by 6:30pm I was officially over the day.  I managed to get myself under some sort of calm by adding makeup into my shopping cart and posting an epilepsy awareness post; at least the latter makes me feel like I am doing something to help.

It does not feel like it has been that long since I have been in this position.  The one where everything between the last melt down and the one on the horizon becomes too much for me to keep bottled up and eventually I turn into a New Years champagne bottle being opened.  I know this is all just part of the repetitive cycle that comes with the situation, but I hate when it gets to this point.  Within the next 24 hours I will no longer be able to hold in the tears; it is ok, it is time for them to come anyway.  By Thanksgiving I will have be able to smack a smile on my face and almost feel the same behind the scenes, and by next Sunday I will have pulled myself back together to face the next unknown period of time.

If only this was not the reality.  If only things could be easier for her and I did not have to watch her suffer so often.  If only there was a magic potion that could be created to completely fix the damage that has been created and will continue to be by her mutated CDKL5 gene.  If only I could close my eyes, go to sleep, and wake up to a Sonzee who was born with a complete CDKL5 gene.  If only prayers such as the ones I have relied on for the past 3 years 9 months and 8 days could actually come true.  If only. 

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Cycles

Her alarm was going off loudly.  Her nurse was in the room with her and I was trying to get dinner on the kids plates after a long day.  I do not know why, but after 3 rings of the alarm I start to get irritated that someone couldn't just press "snooze".  I have a list of potential reasons, but I am sure I would have to really dig deeper to find the real root, and honestly it just annoys me, there really is zero harm in it continuing to sound.  Regardless I stop putting food on the plates and I walk to the room.  I don't get the door to the hallway closed behind me before I hear "It's ok, it's alright Sonzee, I am here, it's ok". 

I walk through the space between her two bedroom doors and walk next to her bed.  Nurse Teri says, "Ya, it's a seizure, we are at 1 minute...it's ok Sonzee".  I bend down next to her feet, rub her ankle, and then rest my face against her foot because every once and awhile these damn seizures get the best of me and no matter that I have watched her seize over an hour between the past two days, this 1 minute causes the tears to just swell in my eyes.  I wait for a pause in nurse Teri's consolations and then say "No Sonzee, it isn't okay that you are seizing, nothing about this is ok, but nurse Teri and I are here...", then I give her a kiss and have to walk out because I don't want nurse Teri to see my face. 

I get into the hallway, close the door after walking out and take a deep breath before I walk back into the kitchen.  I manage to get the tears out of my eyes before getting back to the girls.  They know Sonzee was/is having a seizure because we are all used the alarm by now, and her oldest sister decides she wants to say how she feels bad for Sonzee because of the seizures and that she does not go to the same school as them.  I honestly do not remember what her sister replied to her with because I was in preservation mode and just wanted to do whatever I could to not face them, not hear them, and not have to talk to them.  The one skill I am still (barely) holding onto is not crying and being emotionally upset in front of them, so that was only my priority, well that and getting them fed and in bed so I could get the tears out of my system.

So here I am at 10:51pm with my YouTube music on in the background, my individual serving of cake as my dinner, and my desk looking like a toddler emptied a box of tissues for fun.  It seems that not only does Sonzee's GI system and seizure presentation follow a pattern, but my emotions share a similar cycle.  I wonder how long it will take for this history to stop repeating itself because clearly it is more than 3 years 7 months and 1 day, and I should probably ensure my Amazon subscribe and save has extra tissues next September.

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A "new year"

This past Monday and Tuesday we celebrated Rosh Hashana (the Jewish New Year).  On Monday morning Sam and I debated whether we would be bringing Sonzee to the synagogue in order to hear the shofar (blowing of the ram's horn).  In general I am usually the one that is in favor of bringing her along to family events, while Sam tends to play devils advocate and suggest that Sonzee would much rather not walk .3 tenths of a mile in 105 degrees and sit in a loudish room, "stuck in her chair".  On most occasions she will be in pain, just have had a seizure, or present in some other manner that will make me side with Sam, but on Monday morning, I simply did not care.

Her first seizure of the morning was at 7:57am, seizure number two came a little after 9am, Sam was holding strong with his opinion, but I am more stubborn, and after all this is Rosh Hashana, SHE IS GOING WITH US.  Sam left with the older kids, and I put her baby brother for a nap while she was sleeping the seizure off.  A little after 11 her brother woke up and I was getting everything into the stroller and I told myself I was going to check her one more time to see if she was awake, and if not, I would leave her home.  G-d threw me a bone, she was just waking up, so I told her nurse to get her up because she was coming with us to synagogue, and off we went.

Seizure number three happened in the back of the synagogue, but she was there, she got to hear the shofar sound, and she received the (Cohen Gadol blessing) priestly blessing while she slept in her wheelchair.  We were going to be eating lunch at friends and we decided she and her nurse would come with us and hang out there versus going home.  It was on big seizure four of the day (within 6 hours from her first) that she was given her loading dose of keppra and snuggled on the couch with her nurse.  What a way to welcome a new year...good thing the secular calendar has another celebration in 3.5 months that we can hit refresh for.

I will admit her presence with us all day was 100% selfishly directed, but is it too much to want some normalcy?   As Sam left with the older kids yesterday, he said "see you at 11:30", I yelled back, "no you won't".  He said "You have to hear the shofar", "So does Sonzee", I retorted.  I will admit that I threw myself a toddler tantrum and refused to go to synagogue because "If Sonzee was not going, neither was I".  I was angry, to be honest, I still am.  While she had fewer seizures today, (thanks 3200mg of Keppra, VNS, and Fycompa for doing what you're designed to do?) I am still a bit bitter.  I just hope Monday is not going to indicative of what is in store for her year to come, but I suppose if it is, it isn't anything we aren't used to. 

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Epilepsy Blog Relay: Subtle Seizures

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

When our daughter had her first seizure it was not in a way I would have thought a seizure would look like.  It was subtle, quick, and questionable.  I honestly wonder how many seizures in her first days I missed, or how many I saw but attributed to something else.  I often wonder if I felt them in utero, or if her first one occurred right after birth.  In hindsight, the "wonky eye movement" we saw, that was attributed to just being "weird baby" have become her trademark.  So many times her simple eye roll will be missed by those who are unfamiliar with her, and to be honest even those who know her extremely well can still miss these types, or just think she is being sassy.  They are so fast that epileptologists who are not her own have missed them on an EEG.  They happen when you turn your head to pick something up, when you blink, when you open the fridge, or when you rub your eyes.  They are less than a second and look benign.

So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, "Oh wow, I never would have known that was seizure" and "How did you know that was a seizure?" The worst part about her trademark eye rolls are that they are just as devastating to her brain as her other types.  They tend to occur in clusters, seconds apart, and for lengthy periods of time.  They are the most difficult type for us to stop.  It is this type that resulted in a call to 911, multiple rescue medications, and at the time a new to her fancy diagnosis of "non-convulsive status epilepticus".   

Before 2015 I had never thought about seizures much less known anything significant about how they might present.  Our family has now seen so many various presentations of seizures that our family is quite proficient in identifying most (if not all) types of seizure activity.  It is amazing that our 5, 6, and 8 year old can tell you the intricacies of different types of seizures.  What is so important to know about seizures is that they are not always obvious and they are not what you might envision.  

NEXT UP: Be sure to check out the next post by Abby Gustus Alford at www.livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.

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Getting too comfortable

This past week I feel like I have been sucked into an uncertain realm of chaos.  The little control I thought I had over anything has vanished into thin air with such speed that I can feel its whiplash.  I have looked up at the sky about five times since last week convinced that my life is listed in the dramatic comedy section of G-d’s library.  My brain is overtired, I am physically and emotionally exhausted, fear of the unknown is debilitating, and I feel like my world is closing in on me.  Moments like these I wonder where things would be if we did not have the CDKL5 component.  How would I be different?  How would our life look? 

The way my brain functions these days I know has been significantly influenced by what I have been exposed to over the past 3 years.  I know I have reason to have the thoughts and fears I have, but that does not change the fact that I wish that were not the case.  I wonder if there was a study done on my brain in January of 2015, before the birth of Sonzee, and then now, how things might look different.  Surely the psychological effects of watching your child seize every day and face near death experiences must play a role with how your brain continues to function from that point forward. 

I know the events of last week sent me into this 100mph tailspin because they caught me completely off guard.  I bought a new hospital bag weeks ago after a parent in a local support group raved about a new backpack that comes with a charger and speakers among tons of storage pockets.  It was on sale at Walmart and I thought, “I have to have this even though we haven’t had a need for one, because the current bag I use has only two compartments”.  It came and sat in Sonzee’s room with the tags on every zipper. 

Last Monday Sonzee went to school, she had her typical day and had a seizure with her nurse.  All afternoon her nurse, Sam, and myself sat waiting in anticipation for her next seizure.  When it happened at 6:10pm, I said “oh, there we go Sonzee…we have been waiting for it”.  Never had one seizure resulted in the use of 911, or as much medication as we loaded her with, for it to stop.  We have used the same cocktail to help with a day when she has a ridiculous amount of seizures, but this was our first experience with a seizure not stopping on its own, and even after rescue meds.  I guess that is what I get for getting too comfortable.  I guess that is what I get for thinking, “why would I need to have the new bag packed?”

You would think that I would have learned in 3 years there is no such thing as “letting my guard down” or “getting comfortable”.  It is just not possible.  Things can easily change in a minute, seizures have quite a way of smacking me back into reality when I start to get content with what her "typical" is.  I now have her new hospital bag packed and ready to go in her bedroom.  I can bet the majority of the money we have that it will get used again.  It will be when I am least expecting and at the moment I have gathered enough strength to think “things are going so well, how could they possibly change?”

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Purple

Yesterday was Purple Day, a day to help raise awareness for Epilepsy by wearing the color purple.  For me, to be honest, I just love any opportunity to make something cute or fun about CDKL5 and whatever situation we are faced with as a secondary consequence.  I picked out Sonzee's outfit on Sunday night, and even decided on wearing purple leggings in advance of 7:00am in the morning.  I went onto Facebook and chose the frame I wanted to display for my profile picture as my first attempt to spread awareness of a day that effects 3.4 million families in the nation.  In fact, according to the Epilepsy Foundation "there are more people who live with epilepsy than autism spectrum disorders, Parkinson’s disease, Multiple sclerosis, and cerebral palsy combined", and as of 2015, the CDC reports 0.6% of children 0-17 have active epilepsy*.

20-40% of those who suffer from epilepsy will have drug-resistant epilepsy, which is defined as a patient with epilepsy who does not become and stay seizure free with adequate trials of two anti-epileptic medications.  Sonzee fell into this category by the time she 2 months old, and sadly not much has changed.  Over 3 years she has been on at least 7 seizure medications, while each new drug gives a sense of hope, reality has said otherwise.  Unfortunately, for some reason each dose change, each new medication, each potential for some relief continues to give me a split second of hope and a subsequent broken spirit.  

It was fitting that for 36 hours (12 of them during epilepsy awareness day), Sonzee had not had any of her big seizures.  It was enough time to get excited, not enough time to truly enjoy the moments, but enough time that I am mad at myself for considering the medicine and VNS changes we just made would actually work.  It was enough time for me to be left wondering how I gave into the false sense of hope again.  My mind filled with the thoughts, "You know better",  "Why did you do that to yourself?", "This is not the first time this has happened, you knew how this would end", my heart is filled with brokenness, aching, and longing for a different outcome for her, and my eyes, they are filled to the brim with tears, again.

If you asked me when I was 4 what my favorite color was, I would have eagerly told you it was purple.  It has always been my "signature color", and if you know me personally, you know it was an accent color almost 10 years ago at my wedding.  Yet for the past 3 years it has become a color that I rely on to spread a message.  Maybe one day there will be a cure for epilepsy, but even then, I will not ever look at the color purple the same.

*https://www.cdc.gov/epilepsy/about/fast-facts.htm

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Epilepsy Blog Relay: Time

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

Before you become a parent, you are continuously told "time goes by so fast", "cherish every moment", "Before you know it, your children will be out of the house", and so many other phrases that insinuate life is about to move a whole lot quicker.  You smile and nod at everyone who tells you these phrases, and you might even think you understand what this means, but then your child is born, and your comprehension of those words and phrases take on a whole new meaning.  From the second your child is born you are instantly placed into a lifelong game of tug and war with time, wishing time would speed up, yet simultaneously begging for it to slow down.  If you become one of the chosen parents who are gifted a child with epilepsy, all the above takes on a whole new meaning.

That moment you witness your child's first seizure, or the moments following the realization that what you just witnessed was your child's first seizure, the concept of time takes on an entirely new meaning.  Seconds have never felt so long, yet by the time the next seizure occurs you wonder how time flew by so quickly.  There is now a new version of tug of war, this time it is wishing time would fly by faster so a seizure could end, but then praying time would stand still so you never have to experience those moments ever again.  Yet just like with everything else, the clock does not slow down, it does not stop, it just continues to tic on by.

If your child has epilepsy secondary to a life limiting diagnosis, the tug of war with time game takes on another shift.  Your life revolves around time and an unspoken ticking clock that only you are aware of, that can make you cling to every aspect of the seconds going by, no matter how good or bad they are spent.  You prefer for them to be spent with your child experiencing more happy moments vs moments filled with seizures or other medical complexities, but yet you will take any and all moments you are gifted with him/her.  

Living life with a child who has epilepsy makes a person appreciative of time, never knowing what each second holds, you learn to accept whatever comes your way.  You soak up every second, hoping and praying it won't be the last, but with the fear of the unknown, and realistic potential of that occuring keeping you on guard and in the moment.  You do your best to always be in the moment, but try not to be paralyzed by it.  You anticipate the next seizure while trying to not live in a constant state of fear or panic.  One of the hardest parts of living life with a child who has epilepsy is learning the balance of holding onto time, while also trusting enough to let it pass by. 

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...Seizures...

It was at some point in April 2015 where I became so used to watching seizures occur that they lost their "wow factor".  Sonzee was only 2 months old.  I have seen so many varieties of seizures, so many different presentations that it takes a lot to make me lose my composure.  The first time of a new seizure type it usually takes me a quick second to adjust, but then like becoming comfortable with any new area of parenting, they too just become the normal.  We have been used to 10-15-minute seizures since August, some have needed oxygen, thankfully the majority do not.  This past weekend however, was the very first time Sonzee had a seizure longer than 15 minutes.  We gave her rescue medication and expected her to stop seizing, but it was not until 7 minutes later that she finally came out of it.  I admit the thought of dialing 911 crossed my mind, but I knew she was fine and I knew she would stop, and she did.

Yesterday was the first day this week I had not received a phone call from school telling me Sonzee had a seizure.  I was honestly a little surprised considering she had 2 within 2 hours of each other before school, but when I walked into her classroom I saw her nurse and teacher standing next to her and I said, "I was thinking it was odd you had not called me yet".  She was already a few minutes into her seizure when I gave her kisses, rubbed her arm, and started to talk to her teacher.  Her nurse was doing the timing and we were just waiting for her to stop.  Minutes continued passing by, her nurse letting me know every so often where we were on the time.  A mom friend walked by the classroom, we spoke for a little, and Sonzee continued to seize.  I met her school occupational therapist and she and a couple of others gathered around to learn about Sonzee's seizures.  The clock ticked on, 13...14.... 15....I started to take out her rescue medication and at 16 minutes I told her she had 10 more seconds before I had to give it to her.  10...9...8...7...6...5...4...3...2...1....rescue med given.

Then we waited.

We all continued to talk about her seizures and then finally 7 minutes later it stopped.  We were finally ready to head home and Sonzee agreed because she went from seizing to being rescued to playing with her hands.  I mentioned to her nurse, "Only Sonzee could go from having a 22-minute seizure that required rescuing, to playing with her hands as if nothing happened".  I do not like that her seizures are like the "boy who cried wolf" and it makes me a little sad that they do not all impact me, and that I can sit around for 20 minutes while she seizes carrying on as if she was watching Octonauts on T.V.  I know I do not have the psychological capabilities of entertaining each one like it won't be happening 3-5 more times each day, because they will, they do, and this is just part of her life, but it just hurts that this is where things are at.  

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How? Why? When?

Seizures have been consistently horrific since their debut (again) after the brief VNS miracle wore off back in July, however, this month it appears Sonzee is about to break her personal monthly record.  With three days of January still remaining, as of Sunday she was tied for October and December with a minimum of 415 minutes spent actively seizing each of those months...that is at least 6.917 hours.  Those numbers do not represent any questionable activity or brief spasms (even in clusters).  She has required at least one rescue medication a week since October, and we are extremely conservative with giving her those.  I am at a loss for words, I really do not understand, how does this happen? when is this horror going to stop? what is left for us to do?

I know this is what life is when CDKL5 is the diagnosis, but I am having such a difficult time accepting this for Sonzee.  She hardly complains except when the seizures are so horrible for her that they cause her to whimper afterward.  She puts up with every episode like a champ, sometimes even continuing on with whatever activity she was previously doing rather than falling asleep.  Regardless of how she handles each one, none of them are okay, none of them should be happening.  Why won't they just stop?  Why won't these medications we throw at them actually work?  Why is there absolutely nothing we can do for her?

I have become so used to seizures being part of our daily routine, their shock value has become nonexistent to me despite how dangerous they are and can potentially be.  I vividly remember the days when I wondered who would let their child seize 30 seconds much less 2 minutes before administering a rescue medication like the directions stated.  Now I wonder how I could possibly give her a rescue med at only 2 minutes when she will typically stop on her own around 5-6 minutes.  I have found myself saying, "what's 10 minutes?"  Are the addictive properties better or worse than the potential brain damage she could be experiencing?  Her brain activity isn't typical regardless, so I would prefer she not be exposed to more medications and so the clock can tick on. 

I wish someone could tell me how any part of this should be considered normal?, or why she continuously has to suffer? or when it will stop.  If I could have one wish granted it would be for her to wake up and have a functional CDKL5 gene, but until then I will continue to wonder how? why? and when?


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Epilepsy Blog Relay November Post: Creativity & Epilepsy: Poem

This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!

I wish that the seizures would just stop and go away,

They always wreak their havoc whenever she's trying to play.

They make their grand debut in any manner that they please,

Resulting in a watch and wait scenario that causes all to freeze.

When the random jolts and movements have finally come to an end,

We sit and stare and process all that occured trying to comprehend.

Why do they keep occuring? How is this even right? 

It doesn't matter what we do, we seem to keep on losing this futile fight.

As parents we do what we think is best and throw everything we've got,

Medications, surgeries, alternative attempts, anything to give our kids a shot.

Some relief might be temporary but it never lasts long enough,

Thankfully our kids are resilient, brave, and extremely tough.

One day there might come a time when these events will no longer occur,

Unfortunately waiting any more time for this to happen is not something we parents prefer.

In the meantime we will keep on trying to do our very best

to put up with these episodes and continue on our epilepsy halting quest.

NEXT UP: Be sure to check out the next post tomorrow by David Monnerat at www.epilepsydad.com. For the full schedule of bloggers visit Living Well With Epilepsy Blog Relay.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

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I do not know the specific amount of times I have uttered the words "I quit" over the past 4 weeks.  I have actually perfected my knack for finding the perfect gif to accompany my "quitting" depending on what exactly Sonzee seizure related issue has driven me to fall to the depths.  I keep being told I am not allowed to quit, but honestly, I am losing my ability to keep running this marathon.  Consider me the person on the side in a tent drinking a very large bottle of water, procrastinating continuing the race, needing a very long pep-talk, and also a huge push to get back on the path (there inevitably was a bribe of a large glass of wine, mounds of comfort food, and someone pulling my hand).

There is no problem being persuaded to not quit, truth be told I say it because I have no other words to say, but no matter what I cannot quit.  Even though I won't ever end with the best time, and realistically there won't ever be a happy finish, giving up isn't really a viable option.  It wouldn't even make me feel good in the long run.  In my mind it is useless to keep up fighting the useless seizure control battle, but it is also impossible to not keep attempting to break them down.  

I know this is a losing battle.  I know we are up against a beast that is just not capable of being tamed.  I know the havoc these episodes cause to her little brain are irreversible and detrimental.  I know how all of these medications we give to her are just poisoning her body and even if they are helping to an extent, they aren't a solid match.   The constant battle of having a CDKL5 mutation will always be one filled with the painstaking process of trial and error, but quitting isn't going to change that.

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Spoken Words

Before we left the PEMU last week our epileptologist came in to discuss the results of the previous 24 hours.  To say we love her is an understatement because there are no words that could adequately express our true feelings towards her dedication and treatment towards us and Sonzee since we transfered to her care following a PEMU stay in July of 2015.  She is no ordinary doctor; she spends so much time talking with us one on one, answering emails, and visiting us in person when she isn't even the doctor on call.  I am not sure if it is just her personality or all epileptologists in general, but I am so thankful every day that she is the one we have on our side during this journey.

As we were discussing the clusters of epileptic spasms that "she doesn't like", but that we "shouldn't treat with rescue meds" because there are so many and all it would do is have Sonzee fall asleep and wake up and repeat; as a team we decided to turn off Sonzee's VNS, and maybe a 2 week reboot of her system would somehow do the trick and get her some semblance of control.  Within 5 minutes of turning off the device, Sonzee had one of her "typical" big seizures.  These are our normal, part of our daily routine, "whatever, this is our life" type of seizure and so I continue to carry on the conversation while Sonzee seizes and I stroke her body.  Her doctor looks at me and has a vacant, heart broken look on her face, and says "I don't know how you do this, and I am so sorry".  I shrugged my sholders and said "eh, this is life", and then thought about her words as my heart broke for her.

I did not choose to have a child who would experience these atrocious events.  I did not go grow up and wish to be a parent of a special needs child.  This was all given to me.  This is just part of my journey for whatever reason G-d felt necessary.  Yet here is a woman, who chose to study neurology, who decided to study an extra 2+ years to specialize in pediatric epilepsy, who takes the most challenging and complex seizure cases, who has years and years of experience, watching what I can only assume to be her billionth seizure of a child, and it's her job to find the best course of action to stop my child from seizing, but she can't, and so she tells me she is sorry.  I felt more broken for her than I ever have for myself.   I hope she realizes how amazing she really is and if I had that moment again I would look at her and say "I don't know how you do this, and I am so sorry".

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Gambling

I am not a fan of gambling, chalk it up to not wanting to lose, whatever the underlying reason is, I just don't care for it.  There is too much uncertainty involved, too much on the line, and while there is that chance I could win, there is a (bigger) chance (in my mind) that I will not.   There is too much uncertainty when it comes to gambling, and while some people enjoy the thrill of the experience, it honestly gives me increased anxiety, so if I can, I avoid gambling at all costs.

In February 2015 our journey of near daily gambling began, but instead of it being one of those situations where if you lose you can just shrug, walk away, and still go on your merry way, it became a gamble where it turned out even our best chances would leave us pained and drained on all levels.  There is nothing positive about making choices that will eventually backfire or provide more uncertainty.  I, the person who doesn't even like to put my money into the stock market because I consider it too risky, is stuck being forced to gamble every single moment with my 2-year old’s well-being and essentially life.

Last night I was making my new desk calendar on Shutterfly, because this year’s ends on October 31, 2017, and so I began to look through 2017 picture albums.  Every picture of Sonzee represents a decision that we made with the intentions of making her life the best it could possibly be.  We removed a tube from her face, traveled across the country for medical advice, had her undergo surgery, try (and fail) multiple anti-epileptic medications, try various medications to help her GI issues, and had her partake in various therapies (that honestly haven't ever made a difference in her capabilities).  When the tears entered my eyes, I was not sure of the exact reason.  Was it happiness over the ones of her smiling or sadness over the ones of my three typical children smiling without her in the picture because they were standing somewhere she couldn't be, she was asleep from a seizure, or she was in the hospital?  So many pictures involved the blue sheets of the hospital bed, hospital gown, EEG hat, or IV.  Each one represented a gamble we took in her honor to help, yet ultimately failed her in the process.

I try my hardest not to look at our failed attempts as a reflection on our decision-making capabilities or my bad gambling luck.  I tell myself this is just the deck of cards we have been handed and we are doing our best every day.  I try not to get angry over the situation, because it is what is meant to be, for her and for us, but this gambling is breaking me down.  Every decision if it has a positive outcome is short lived, and ultimately ends in heartbreak for us and it seems pain or discomfort of some sort for her.  I wish there was a crystal ball that gave us the right answers on how best to help her, but there aren't any right/wrong...it’s just outcomes that come from the best decision we can make at the time with the information we have....

...but no matter what, it will always be a gamble.

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