We are alive!!

Hi all!!

Just a quick post to update you on how we are doing since I realized my last post was over a month ago (yikes)!!

Evan did have a "mild" seizure as we were packing up on a Sunday preparing to go home from our big friends & family camping trip.  Just one more day would have marked 15 weeks since his last seizure.  It was a hard pill to swallow...with each seizure we are hopeful it is the last, especially as so much time passes between.

So, when faced with the reality, we focus on the blessings.  We were so blessed to have so many kids and adults around to help.  Evan was actually riding his bike at the time (wearing a helmet...ALWAYS a helmet!) and reportedly bumped into a parked truck and then wandered into the campsite it was located at (not people we knew).  Kids who were with him recognized something was wrong and alerted us as well as some friends who were in the next site and everyone flew into action.  By the time I got to him, he was already coming out of his seizure.  We were very thankful that we didn't have to administer his Diastat, and so thankful for all the friends and family that we were surrounded by.

I was also thankful this seizure was so mild in comparison to the last two.  In my mind, this tells me his Lamictal does do something, and that it wasn't at a therapeutic level during those last two seizures.  Lamictal is part of our tripod...medication, diet, and naturopathic medicines.  If one leg is not up to snuff, the whole thing is off balance.  I feel a bit of relief knowing that he is at a more therapeutic level.  When I first wrote that, I initially I felt more comfortable...but I didn't feel that was accurate and honest.  Comfortable isn't something we have truly experienced in relation to epilepsy since Evan's diagnosis.  That simply doesn't come with the territory.  Feeling a bit of a relief is a win in my book!

We have been on several camping trips since (with at least one more planned) with great success.

This week the focus has honestly been on back-to-school preps.  Oh and where, exactly, did this summer go?  Wasn't 4th of July like last weekend???  Finished up the school supply shopping, got some new kicks for the kids, a few new shirts, and Evan got a haircut since he wants his hair longer these days (and Mama don't know how to do that right).

My handsome lil' man all ready for 1st Grade!

Tonight is "back-to-school" night at the schools, so we will be dropping off school supplies, medications, and rushing around trying to get everything packed in that we can (see classrooms, teachers, sign up for PTA, get planners....the list really does go on!).

AND... I am working on a bigger post (or two)....so stay tuned!!

Camping Fun!

First, and update....we are still (carefully) counting the days since Evan's last seizure.  He seems to be doing really well (knock on wood), but we are still in Def Con mode, carefully watching, listening, and worrying (and praying that the last seizure was the last)!

2009 - both boys have been camping since
 they were literally just months old!

Camping is one of our favorite family activities.  Both my husband and I have great childhood (and adulthood) memories of camping trips filled with adventure, exploration, staying up late around the campfire, and of course, S'MORES!!

For Evan, he gets to enjoy most of that.  Staying up a little late is ok, but he is in bed before just about everyone else.  AND...NO S'MORES!!  The sugar, the carbs, ugghhh!!  All a MAD diet no-no!  The good thing is, because Evan is in bed rather early, its easy to wait to do s'mores until after he is in bed.  BUT, that doesn't mean he isn't without his share of special treats.

TREATS and SNACKS:

Ok, lets hit this point first.  Its often the most important in a kids eyes as they build up quite an appetite hiking, exploring, walking downed trees, riding bikes, and (as seen below) hunting crawdads catch and release style.  That was his first time, and he was SO proud of himself and excited.  Highlight of that weekend for sure.

2015 - This was the best pic I could get of him with a crawdad.
Tried to get him to smile but he was busy concentrating on holding it,
then off and running searching for more!

Gah!  I digress!  Back to treats and snacks....I always am sure to bring other treats for him so that he doesn't feel completely left out.  The Hemp-Hearts cookies are a big one.  You don't worry about them spoiling or melting, they are a cookie (need I really say more?) and he truly loves them.  As we make camping preparations at home, he will watch (and often help) make the cookies...but he doesn't get to eat them until camping (I know, I'm cruel).  The suspense makes the reward feel so much more special.  He will proudly tell others "I get to have a cookie later!!" and it makes me smile.  He is happy...and I am happy because he feels included and like he is getting a special treat, and also because I know how good they are for him and his brain.  

OH!  And FLUFF!!  You can't go without fluff!

I will also seek out other snacks that he gets primarily when up camping such as low-carb/gluten-free meat sticks and a dish of some "nacho" cheese stuff (be sure to look at ingredients list and carbs as it definitely can vary!).  We are also sure to pack his go-to favorites (almonds, pistachios, macadamia nuts, pork rinds, cheese sticks, olives, pickles, sliced fresh veggies, etc).  That way he has a good variety of preferred snacks.  Just be sure, when giving a snack, that there is some fat content.  For example, if I give him some fresh veggies I also ensure he has something with it that has a higher fat content as well, even if its just some cheese or nuts.

MEALS:

I try to do as much food and meal prep at home before we go so that I can relax and enjoy the great outdoors as much as possible.  Breakfast is often omelette cupcakes or eggs n' sausage with a bit of fruit, both easily reheated in foil over a campfire of in a pan.  The eggs...not the fruit! 

We keep lunch simple as I think the kids often see it as an unnecessary interruption of their play.  Often its just deli meat and cheese with salad or some favorite sliced veggies.  

Dinner is sometimes what we are all eating, and sometimes a substitute if what we are having is not MAD friendly.  Hot dogs are almost ALWAYS on the menu for one night.  I like brands that are not only low in carbs, but that also have no added nitrates or nitrites (I have the same criteria when looking for deli meats).  Hot dogs can also be a good quick n' easy lunch.  In the past up camping, we have had a version of Philly cheesesteak sandwiches that the meat/cheese/veggie part is MAD friendly.  So he just gets his Philly without the bread but gets to share in the super delish part.  Or maybe its a foil-pack dinner with a mix of kielbasa (or some other fatty meat) and preferred veggies and some dip.  Whatever it is, we make sure dinner comes with some veggies/salad and, depending on the carbs he has had that day, maybe a bit of fruit for desert.  AND, because they are good for his brain and very low carb, I don't hesitate if he wants a "second" desert of his fluff and/or cookies (see above on Treats and Snacks).

BEVERAGES:

We have come up with a few things that help Evan to feel more part of the kid crowd when up camping. As they are slugging down soda and juice, he is drinking his "fizzy water " (flavored seltzer water).  LaCroix and Dasani are both brands around here that have zero carbs, have a good variety of flavors, and come in a can for that "I'm drinking a soda" feel.  When the kids are sipping hot cocoa in the mornings, so is Evan.  His version is just 100% coco powder dissolved in some hot water, then I add his heavy cream and about 3-4 stevia drops and voila!  MAD Cocoa!!  You can even put a dollop of "fluff" on top for the whipped cream!  Then, we all are drinking water, Water, WATER to ensure we stay hydrated...especially if its a scorcher of a weekend.

OTHER CONSIDERATIONS:

As any parent of a child with epilepsy knows...planning is key!  So, when we go camping, we choose places to camp that are not too far from emergency services (about 20 minutes from the nearest fire station is about our comfort level).  We have had to decline camping trips in the past because they pushed that level beyond our comfort zone, but know we were doing the right thing.  Evan's life and health is of utmost importance, and given the severity of his seizures as well as complications he has had in the past, we just can't risk it.  Its also important to KNOW where those services are.  Do a little pre-planning and mapping.

We also have a plan.  If Evan were to have a seizure when up camping, we don't wait.  We hop in the car and start heading for emergency services right then and there with his "grab bag" in hand so diastat can be administered en route if needed.  If he comes out of it on his own, or even if he needs diastat but responds and has no complications, fine...we turn around, happy to return to camping.  BUT...if he has a prolonged seizure that the diastat is not bringing him out of, or has complications as a result of the diastat (BOTH of which have happened to us!) then we are already on our way to medical help!  Its horrible to think about, but its our reality.  We have to think about such things, now.

We don't want epilepsy to control our lives or stop us from doing what we love.  We still do what we love to do, as a family and individually...but with added preparations and safety measures in place to do what we can to minimize the risk.  We cannot take away all risk...risk is part of life, and part of living.  And we choose to live.

From a few years ago (2012 or 2013) with a good friend.
Captures the spirit and joy of kids and camping.

Def Con

Does this happen to any of you?

I feel like we are walking on eggshells right now.  On borrowed time.  We are past the usual timespan between "episodes" (see previous post on "Superstitious" if you want to know why I'm using these terms...just a little stitious!!).

If he is quiet for too long...I tense up.  If he doesn't respond as quickly to questions...my stomach flips into a knot.  At night...strange sounding movements and I'm holding my breath, praying as I check on him.

We are hoping for the best.  Always are.  Hoping the last seizure truly was the LAST.  But, we can't help feeling like that his epilepsy is just sitting there, toying with us, amused every time we jump as fear washes over us.  We are always in a state of Def Con....ready to fight, ready for battle.  I can only hope that we are truly ready when (and IF) epilepsy decides to strike.

Traveling

Vacations are a necessity for us.  And I'm not just talking about family vacations.  My husband and I take an "adults only" vacation every 2-3 years.  For us, it is a time when we can take off our "parent" hat and focus on being husband/wife and best friends.  After kids are grown and gone off on their own, it will be just us...and we want to be sure we are still well connected as a couple when that time comes.

Of course, when any parents travel (with or without kids), there are always worries.  When you have a child with epilepsy, that is definitely magnified!  Our trip was a little over a week after his latest seizure (see last blog).  It was not easy for me to get on that plane.  I struggled with myself...the mom/emotional side in me wanting to stay, in part in fear of what I had so recently seen and experienced.  Each time that side reared up, the other side of me was able to rationalize and calm the beast... to an extent.  In reality, I knew we needed this, and I found some comfort in the thought that God has a plan, and I need to trust in that plan, whatever it may be.  But, there were also things I needed to do in order to make this a successful trip.

One necessary piece that is needed to enjoy a vacation sans kids is knowing and being able to trust that my kiddos are in the best hands possible.  We have the blessing of having grandparents that watch the kids for us, so we know they are in loving and capable hands.

After we have kiddo-care arranged, its all about the prep work.  Making sure there are sufficient medications and supplements (Evan takes several, prescribed by his Naturopathic Doctor), writing out a schedule (medications, activities, bedtime routines, etc) to take guesswork out of it for the caregivers, ensuring there are medical releases signed, contact information (both for doctors, etc as well as for us), ensuring school knows who the primary contact will be while we are gone, and ensuring ample food for Evan's specialized diet is on hand.  I usually start on all of this at least a week in advance as I know I will think of things to add as the trip gets closer and as I move through my day.  You'd be surprised how many things we just do and don't really think about!

For this trip, since we were going to be out of the country, we also added an International plan to one of our cell phones so we could be contacted in the event of an emergency.  With this plan we also got unlimited texting, so were able to text here and there throughout the day if we wanted...and grandparents could get in touch with us as well.  ("Where are the hemp seeds?"...yup....I got that text and was honestly extremely happy because they could easily reach us if they needed ANYTHING!!)

We were fortunate to have WiFi in the condo we rented.  Well, I guess these days WiFi is just about everywhere, so maybe the word "fortunate" is becoming less applicable.  Pretty soon, if not "already" in some places, it will be expected!
But, I digress...
FaceTime!  This is where I was going with this.  Each morning, we would FaceTime (Skype would work, too) with the kids.  We were able to see they were doing well, talk to them before they started their day, make sure grandparents were surviving (is the wine supply holding up?).  At least for me, this allowed me to better enjoy my day and truly relax knowing all was going as it should at home.  Everything else I turned over to God.  At that point I had done all I could, the rest was in His loving hands.

The result...a successful and relaxing vacation!!

Raw Reality

I think, on some level, I have been avoiding writing this post for weeks.  I don't particularly like the emotions it is making me re-live and confront.  But, it is my reality, and I do feel like by sharing it may help others.
**Please note...this is a post into a deeper and darker part of my life with epilepsy.  If you are easily upset...you may want to skip this one.

       (*deep breath*)

Let me start by saying...I HATE SEIZURES!  And I am not a person who truly "hates" by nature....so for me to say that is saying quite a lot.

THE MOST RECENT HATE TRIGGER:
It was weeks ago that Evan had a cluster of breakthrough seizures...each worse than the last.  It was a nice evening that became chaotic quickly.  It started with just an eye twitch, then a large round of vomiting followed by inconsolable crying with no discoverable cause.  To make matters worse, we weren't home at the time.  Once we had calmed him and gotten us cleaned up, we thought we were in the clear, so we headed home.  For some very strange reason (intuition?), I decided to sit in the back with him.  We were nearly home when seizure #2 hit...this one started with more vomiting, and then his more "classic" seizure activity of facial tics, eyes fixed and dilated over one shoulder.  It ended before we got home, and before the 5 minute mark.  Once home, we stripped down.  For the second time that night we were both covered in vomit.  I took him upstairs and he proceeded to go into yet another seizure.  This time, no waiting...Diastat...STAT!!!  As if all of that wasn't bad enough...

The Diastat did work, his seizures slowed and eventually stopped.  But his breathing slowed as well.  He was now a limp shell, laying mostly naked on the floor in the rescue position.  His face started to become pale and his lips had a bluish hue to them.  This was new to us.  This was not normal.  In a panic we called 911.  As I called to Evan, trying to bring him to some level of consciousness, I agitated his chest with my hand to encourage deeper breathing.  It was helping...but his breathing was still extremely irregular and shallow.  If I stopped, so did he.  It seemed to take forever for everything...for his breathing to regulate, for the paramedics to get there, for it all to be over!!  I felt so helpless, so lost, so scared.  I didn't know what was going to happen or if he was going to be ok.  All I could do was pray, call to him and keep rubbing his chest...watching for signs of further distress.

Thankfully, his breathing did regulate.  The medics did come and assess him, and we did go into the ER as they were suspicious that he aspirated on his vomit at some point.  Sitting in the ER leaning on the rail of his hospital bed while he slept, I started to cry a bit.  Up until that point, I've never really asked God "Why?...Why him?...Why us?".  I feel some shame in admitting that I did question God and His plan.  But, I did, and then I simply prayed.  A nurse came in and I quickly pulled myself together as he was wheeled off for chest x-rays.

In the ER

In the car on the way home, I was nearly trembling as I felt all the emotions welling up just below the surface, and I silently prayed my husband wouldn't touch me or say anything caring as I knew the flood gates would open.  Now, having them open wasn't what I was afraid of.  I was exhausted, it was after 3am, and I wasn't sure I would have the strength to close those gates once they were opened.  I felt as though I was suffocating, and only imagined that it would be worse if those gates opened at that moment.  Honestly, I didn't cope with my pent up emotions until almost 24 hours later when I broke down in my husbands arms and just sobbed.  So much fear, sadness, and a dash of relief that Evan was ok came pouring out.  It was horrible and good at the same time.  An absolute juxtaposition of emotions.

THE POINT:
But...this all isn't the point of this post.

The point of this post is my hatred for epilepsy and seizures.  The point is the tireless battle we are fighting.  The fact that every moment of our lives is now lived with the added stress of epilepsy and all that goes along with that diagnosis.  Living in fear...praying that we don't someday wake up and find that SUDEP has taken our beloved child.

It was only a few days before Christmas that he last had seizure activity (small celebration...almost 4 months between seizures).  It was another cluster of seizures in the wee hours of the morning.  My husband heard strange noises coming from his room and insisted we needed to check on him.  I thought it was just his normal movements.  Reluctantly, I went in to his room and when I saw him, my hear stopped!  Panic entered my body.  His little body was limp, unresponsive, and face down in his mattress, laying on urine soaked sheets (he NEVER wets at night unless he has a seizure).  After I removed him from bed, he went into another seizure.  It terrifies me to this day (and brings tears to my eyes) to think what could have happened if my husband wasn't so insistent...if I had succeeded in dismissing the noises as "normal" and simply rolling over and going back to sleep.  I feel panic just writing this... panic and guilt!  I'm his MOM...I should have known!  The thought of what could have been keeps me up at night.  Every time I hear movement from his room my heart stops, my eyes grow wide, and I feel adrenaline and panic entering my veins as I listen intently to decipher if it is his normal moving in his sleep, or if there is a seizure-like "rhythm" to the movement.

HATE AND FEARS:
Parents of all children have fears.  And I know tragedy can strike anyone at any time.  But to have it thrown in your face, to brush with tragedy so frequently, for there to be a cause of all of this...THAT I HATE!  I hate feeling scared so much.  I hate that it makes me nervous to go out on a date with my husband, or to take a much needed and deserved vacation.  I hate that I feel compelled to have my phone with me at all times (literally) when he is not with me in case he has a seizure.  I hate feeling utterly helpless and unable to protect my own child from the terrors he faces, especially during a seizure.  I hate that this has already had such an impact on his short life.  I really hate that there are so many out there that are experiencing the same feelings.  I hate the fact that, whenever we want to get away for the weekend, that we have to think about where the nearest emergency services are...just in case!  I hate that we have had to turn down vacations with close friends if it was too far away from services.  I hate the medications and their laundry lists of side effects.  I hate that even neurologists can't give me straight answers to my deepest and biggest questions.

THE HATRED AND "DARK SIDE"
My heart aches for this all to just go away.  I hate that I feel hatred for something so deeply.  Even in Star Wars we are taught to fight feelings like hatred lest you turn to the "dark side".   But my son is being attacked.  I am his mom and I want to protect him like any "mama bear".  But, this attacker hides in the shadows, sits silently just watching and waiting to strike again.
Epilepsy, you are a COWARD and I truly HATE you!
I will fight you with my every breath.  I am throwing everything I can possibly find at you, and will continue to do so.  I will continue to seek out ways to destroy you.  I am fighting you with pharmaceuticals, with diet/nutrition, with naturopathic medicine.  Most importantly, I am fighting you with prayer and the grace of God.  And...I am NOT alone!

Superstitious?

I've never really considered myself a superstitious person.  Of course, when I was a kid, I would step over cracks in the sidewalk, when riding in the car I would hold my feet up over railroad tracks or hold my breath through a tunnel, and I'm sure several more.  But, I didn't really believe my mother's back would break if I happened to step on a crack.  It was just for the fun of it.  More something to do.  And, to be honest, I still sometimes step over cracks in the sidewalk for fun or hold my breath when going through a tunnel.

Of course, some things I would do not because I really believed anything bad would happen, but why tempt fate??  That philosophy has been taken to a new level with epilepsy.  I can't say how many times I have "knocked on wood" when talking about Evan and his epilepsy.  This is also true with the "s" word (ok....I can say it....seizure). Evan hasn't (knock on wood) had a seizure that we know of since the Monday before Christmas.  I was talking to my parents about it and would say things like "He hasn't had an "episode" since the one before Christmas", and I still rapped my knuckles on our wood table when saying it.  Do I truly believe my uttering the word will cause him to have one?  No, but...why tempt fate?

I think Michael Scott of The Office says it best.  "I'm not superstitious, but I'm a little stitious."

Evan's M.A.D. Birthday

Birthdays are usually filled with parties, presents, cake and ice cream.  Evan expects nothing less.  Oh, he knows his cake is not like everyone else's...but that is not a reason not to make it just as special...if not more!

Oh....and this kid does NOT let you forget his birthday is coming!
The day before, it was: "When I wake up in the morning....I'm gonna be 7!!!!" (like every 20 minutes).
And he would say it at the most random times.  We would be talking about a school assignment, or he would be happily playing with cars, when all of a sudden I could feel his energy vibrating and knew what was coming..."HEY MOM!  When I wake up in the morning...I'm gonna be 7!!!"  Yup.  That was our day.  If ever there was a day we were ready for his bedtime, it was then.  Of course it was cute and endearing (the first 347 times), and each time we would smile and confirm his statement.  You couldn't help but smile at his absolute exuberance!

On that special day, he woke to a room filled with balloons.  Well, kind of.  He was so sleepy he came straight into our room (as is his routine) for some "good morning" snuggles and hugs and didn't even notice the balloons!  When he went back to his room to get dressed...SURPRISE!!!  All smiles from then on!  Unfortunately (or fortunately) it was a school day for him.  I packed him a special lunch with a simple "happy birthday" note, and sent him on his 7 year-old way.

To help make his day special, he got to pick what we had for dinner (pizza without the crust), and I made him a special desert that he also had at his party a few days later.  I threw out a bit of a prayer with this desert as I hadn't made it before and some of the previous deserts I had made didn't go over all too well.  This is a recipe I came across on Pinterest.  It sounded good, and looked good, and people had good things to say about it.  SO...jumped in, and grateful I did!!  WOW!  All of us commented on how it tasted extremely similar to pound cake.  Probably the closest thing he has had to any bread in years.  Very tasty...even by us in the family that are not on a specialized diet.

The simple and awesome recipe can be found here:
http://www.genaw.com/lowcarb/pound_cake.html

The entire recipe works out to about 6.3g net carbs
Out of this recipe, I made 10 cupcakes (so about .6g net carbs/cupcake)

After making the cupcakes...
1.  I cut off the top,

2.  Added some of his "fluff" (made a batch with berry flavored Stevia drops, and added in 4 blueberries and 2 strawberries for flavor, color and nutrition),

3.  And topped with 2 blueberries and one strawberry.

Super simple!!

With all the add-ons, the net carbs of this beautiful and delicious desert is a whopping 2g net carbs.

Definitely a desert we will be making again!!

Sick Days and M.A.D. Mac n' Cheese!

For the parents of a kid with epilepsy, sick is never good.  "Sick" puts us on edge, watching, waiting, wondering if, and more likely, when a seizure will strike.

Evan came down with a cold over the weekend.  Thankfully no seizure as a result...and we were throwing everything at it to help his body.  Vitamins, rest, humidifier, naturopathic remedies, extra fats, etc.  This time it worked...but there are no guarantees.  The feeling isn't so much that we won...but that we got lucky this time.

I sent him to school on Monday as he seemed to be on the upswing of his cold and doing relatively well.  When I was nearly to work, I got a call from the school that he was extremely tired and fell asleep on the bus on the way to school.  So, I flipped around to go pick him up.  On my way I got to thinking about how epilepsy changes sick days for me.  My older son is at the point where if he has to stay home from school sick (not high fever sick, but "just-not-well-enough-for-school" sick), I could go in to work for a while, or run an errand or two if needed.  He is old enough and quite capable of being left home alone for a while.  I got to thinking, that when Evan is that age, that will not likely be an option.  It is very possible I will always feel the need to be home with him when he is sick and more prone to seizures.  At the moment I thought this, it was a moment I felt yet another loss.  Partly for me, but mainly for him.  Being old enough to stay home alone has been a rite of passage for my older son.  Something Evan will likely not experience until he is much older.  I know there are potential devices and safety plans and work arounds that will likely allow him more freedom than what I was thinking at that moment, but in that moment I simply felt more loss.

The thoughts didn't last too long before I had a self-talk and reminded myself that we take what comes when it comes and we do our best.  We cannot predict what will happen in the future, so it is silly to spend too much time there dwelling and worrying.  We will adapt and figure it out.

Thankfully Evan's little body just needed a little extra rest as about an hour after he was home he was asking to go play outside.

That same day I had been craving a good, homemade baked mac n' cheese (oh so sinful!!)...so guess what was for dinner Monday?  Yup....nummy baked mac n' cheese.  Evan found out what I was planning and decided he wanted to participate...so I had to come up with a M.A.D.-friendly option on the fly.  I had decided to give cauliflower mac & cheese another shot.  The first time I tried this was years ago.  I followed some recipe and it did not go over well.  Honestly, I tasted it and couldn't blame him.  We haven't tried since.  I was glad I decided to give it another whirl as this one turned out much different.  I made it and served it, and he devoured it.  Success!!  We all had a taste...really not bad!!  I think we all could adapt and eat it as a healthier option to the recipe I had made for the rest of the family (which was the ooey, gooey carby noodley sinful one).

The recipe for the M.A.D. version is below.  Its really is pretty simple as well as fluid (so easy to tweak if ya want - get creative!!).  With some things it was "add a little of this" and "add a little of that".  If you tweak it more and find other yummy ways to prepare it, please let me know. I'm always open to trying new things.  I did fail to take pics of the process as I really wasn't sure how it would turn out, and only got a quick snapshot of the end result.  Sorry, its all I got, folks.

___________________________________________________________

Evan's M.A.D. Baked Mac n' Cheese:

• 1/2 c. steamed cauliflower (I used frozen florets thawed in the microwave)
• 1/2 c. sharp cheddar cheese (shredded...can also use whatever you have)
• heavy cream
• 1 T to 1/4 c. Alfredo sauce to taste (jar...I used Bertolli.  This is *OPTIONAL but helps flavor)
• mustard powder
• paprika
• turmeric
• crushed pork rinds

1.  Preheat oven to 350 degrees.

2.  Melt the cheese into the heavy cream.  I simplified this and put them into a glass liquid measuring cup and heated it to melting in the microwave.

3.  Add in the Alfredo sauce, mustard powder, paprika, and turmeric into the melty cheese and stir well to mix.  Taste and adjust balances as needed. 

4.  Crush, smash, or "rice" the cauliflower.  Be sure its well steamed before you do this.  Mine was a bit under done and it made this process more difficult than necessary.

5.  Mix cheesy sauce into cauliflower and pour into a small ramekin or other oven-safe dish.  Sprinkle crushed pork rinds on top and bake for 20 minutes.

Recipe makes 1 serving.

Net Carbs: 4g with the 1/4c Alfredo sauce.  If you use less sauce, or a different brand, this could change.  Bertolli is 2g/net carbs for the 1/4c.

I.E.P. Rollercoaster

I attended Evan's IEP yesterday.  I am SO thankful for the schools here and the team that is working with Evan.  They are truly committed to seeing him succeed, and always grateful for input, information, and suggestions from me.  I have heard many parents complain about their schools, and have heard some real horror stories about the battles some parents have had to go through to get proper services and supports for their children.  I am relieved that, so far, I have not had those experiences.

That being said....this IEP was a bit difficult for me.  They did his 3-year testing to show that he still qualified for services which included testing in many areas.  Speech, IQ, math, reading, writing, comprehension, cognition, etc.  Overall, I have always seen Evan as a generally typically-developing kiddo.  I know he has a speech delay and is a bit delayed socially, but never really had it all laid out on paper as I experienced yesterday.

On the Wechsler IQ testing, Evan scored a 73, well below average.  Many of his testing scores came out with similar results.  My heart sank a bit.  I've never seen him as being so far below average!  I wasn't prepared for that, and admit that there was a part of me that temporarily felt defeated (and guilty).  But, then a voice inside me reminded me of what I have felt for a while now.  Evan is NOT abnormal.  He is simply developing at the pace Evan is supposed to develop at.  Yes, medications have played a role in his delays, and I can feel guilty about that...but, the fact is, HE IS DEVELOPING!  He is continually learning and growing.  Who cares if its not at the same rate that Mr. Wechsler thinks he should be developing at (ok...I really don't know if there is a Mr. Wechsler...that is just an assumption of mine)!

Then was the reinforcing upswing of this rollercoaster.  All the evidence of how hard he has worked and how far he has come.  He has met, and in many cases, exceeded the IEP goals set last year.  At the beginning of the year he was barely writing the letters of his name...he now copies full sentences and can write all letters of the alphabet.  At the beginning of the year he couldn't write any numbers...he can now write numbers 1-20.  Heck, at the beginning of the year he wasn't recognizing numbers beyond 5!  He can now count to 100.  He is starting to read!  These are just a few of the examples the team gave me, reinforcing that HE IS DEVELOPING!  More importantly...he will continue to develop as God has intended for Evan.

I am refusing to see him as a test score, and encourage all parents to do the same.  Those do not take into account what we know about our kiddos as their mom.  Test scores cannot define him or anyone else, and cannot predict what a person can do with their life.  Set high standards for your kids and watch them grow!  Allow them to  explore their limits, don't limit them.  Ok...maybe its ok to limit them when it comes to some things...too much ice cream isn't good for anyone!  

We have set the bar high again with his IEP this year, as we did last year.  I look forward to seeing him surpass those goals by March 2016.

Mommy Fears...and why I can't enjoy sleeping in

There are many "mommy fears".  Some are justified, some are irrational, and some (ok, many) we can't explain.  There are the ones we have when our kid is doing something "dangerous" such as riding a skateboard down the driveway (fully geared...so maybe not completely dangerous), and we bite our tongue, hold our breath and maybe even look away...hoping and praying they won't fall.  These are the fears all mommies have from time to time.

Then there are the fears I never anticipated I would have, and didn't have, before epilepsy.

Most mornings Evan is awake between 6:30am and 7:00am.  On occasion he will sleep longer, but that isn't too often.  Before seizures, having a morning the kids didn't wake up before 7:00 am was seen as a blessing.  A gift, of sorts, from the universe..."You are such hard-working parents, you deserve to sleep in!" says the Universe.  "If I must." I would reply.  

This morning I woke up to my alarm and not a 6 year old poking me in the face.  Hmmmm...Evan must have been tired and needed extra sleep.  As we know, sleep is good for our kiddos with epilepsy, so I let him sleep.  I showered and got ready for the day.  7:30am came and went.  With each passing minute, I had to resist the urge to go in and ensure he was ok.  Side-note...he is a light sleeper, so just going in to check on him would cause him to wake up, thus my internal struggle!  I argued with myself..."what if something is wrong?!?"..."but if he is sleeping, his body must need sleep!  Let him rest!"  After about 20 minutes of fretting and worrying and arguing with myself, I couldn't stand it any longer and I went in.  He raised his sleepy head to look at me...a sleepy grin crossed his face as he said "mornin' mama".  My heart warmed and my brow released as I let out a sign and said "good morning" and smiled back.

Since epilepsy, I no longer can enjoy a morning of "sleeping in".  I still catch myself at times, lying to myself..."Oh, I just wish they would sleep in!!" but, deep down, I know that it only brings worry that increases with every passing minute.

Hemp Hearts

I stumbled upon Hemp Hearts while walking through Costco.  The bright orange-e-yellow (is that a color??) bag caught my eye.  At the top of the bag, words called out to me "Omega 3 and Omega 6".  That definitely grabbed my curiosity by the collar!  I stopped and grabbed a bag to examine it further.  P.S. Kudos to you, marketing genius of Manitoba Harvest!  Somewhat skeptical, I flipped the bag over, sure I would find something wrong with it.  Carbs? 3g  HAH!...oh wait....there is also 3g fiber so really 0g net carbs.  Fats?  13g...thats good.  Protein? 10g...not bad.  Funky ingredients added in I can't pronounce?  NOPE...just one ingredient...RAW SHELLED HEMP SEEDS.

I was smitten!  I HAD to find a way to use these!!  Through the power of modern technology, I whipped out my smartphone and found a couple of recipe ideas (an "oatmeal" of sorts and a cookie recipe).  Excited, I tossed the orange-e-yellow bag into the cart.

"What in the world are hemp hearts?"
In short...hemp hearts are hulled (or shelled) hemp seeds.  Yes, the seeds of the hemp plant...basically the same plant marijuana comes from.  No, they are not marijuana, and no, they will not make you high.  If you came here for that, you are barking up the wrong plant (BUT, I do have a cookie recipe for you below).

Back to this amazing hulled beauty.  I have since done some more research on hemp hearts and their amazing properties.  I have not been able to truly find anything wrong with them!  They contain a good balance of amino acids, proteins, essential fats, and vitamins.  They are literally loaded with nutrition!  They have NO glycemic load, and are suitable for those with sensitivities to nuts, gluten and/or lactose.  AND due the high protein, they can also be used as a meat substitute.

Body Ecology (click to read article) has done a thorough post/write-up about hemp seeds for those wanting to know more.

"Ok, you convinced me.  Where can I buy them?"
 They may be available at a Costco/Sam's Club.  You can usually find them at health food stores, OR you can find them on Amazon (link in My MAD Pantry to the ones I use).

"Now what do I do with them?"
Healthy for the whole family, hemp hearts can be used in many ways.  They are completely edible in their raw form, so can be sprinkled on salads, yogurt, or just simply eaten out of the bag.  Raw, they have a unique nutty flavor and are a bit chewy.  Their texture is similar to that of finely chopped walnuts (or other softer nut).  Evan's favorite ways to enjoy hemp hearts are sprinkled on his Fluff, as an "oatmeal"(recipe below), and as a cookie.  Honestly, our whole family enjoys the cookies...even my 9 year old has requested them.  "Go for it, buddy!"  He thinks he is getting a cookie, and I know he is getting a super nutritious snack!

 The hemp heart/chia seed cookies go a little something like this:

The cookies are especially versatile in that they can be used for any occasion where a cookie may be needed.  Ok, lets face it, cookies are always needed....but these simple after dinner treats can become something special when you add in a cookie cutter or two!!  Think hearts for Valentine's day, evergreen trees at Christmas time, etc.  I even concocted a M.A.D. friendly icing using coconut oil...but that is still in the development phase.

I have found it important to be sure the dry ingredients are all mixed well first, and that you squash as many coconut flour lumps as possible.  Once you add the wet ingredients, mixing thoroughly becomes a challenge and if you didn't mix well, then your cookies may develop pockets of super flavor (holy cinnamon, Batman!!).  For a good, evenly flavored cookie, this is an essential step.

Dry ingredients, mixed

Before you add in the wet ingredients, be sure the coconut oil is COMPLETELY melted...that means no little white lumps of any kind left.  The oil should be basically clear.  After the wet ingredients are added and mixed in, you will notice that the coconut flour quickly absorbs most of the actual liquid, making the dough a bit flaky while at the same time still a bit gooey due to the coconut oil.

Flaky and gooey "dough" ready to be formed into cookies

Now its time to get down to business!  Be sure to take your rings off before this next step.  Things are about to get a bit messy.  On the plus-side (and with cookies there should always be a plus side) the coconut oil is great for your skin.  Roll the dough into 12 (basically) equal balls, place them on the parchment-lined cookie sheet and gently squish them into cookies.  The edges will break a bit, but you just have to lovingly smoosh them back into place.  The shape you smoosh them into is the shape they will remain.  With this recipe, they will not rise, expand, or anything like that.  They will stay the way you put them (unlike the throw blankets I keep folding and placing on the couch).

The Christmas cutouts we made using this recipe after baking.

You know they are done when the timer you set for a short 15 minutes dings.  They only very slightly change in the way they look (may or may not become slightly more golden), so do not wait for a sign other than "DING!".  Doing so could result in smoke alarms going off.  Maybe I do speak from experience, maybe not.  My secret is safe with me.

After they have cooled a bit on the parchment/cookie sheet, they are ready for hungry tummies to enjoy!!

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Evan's Hemp and Chia Cookies:

This is a recipe from Thrive Style that I have slightly altered to use the hemp hearts (instead of seeds with the hull on), Stevia drops, and make them a bit more to Evan's taste.

• 1/2 c. hemp hearts
• 1/4 c. chia seeds
• 1/4 c. coconut flour
• 1 1/2 rounded teaspoons cinnamon
• 1/2 rounded teaspoon ground ginger (dry)
• 1/8 rounded teaspoon sea salt (white, black, pink...any will do!)
• 3 eggs
• 1/4 c. coconut oil - MELTED (very important!)
• 10 drops liquid Stevia (or to taste)
• 1/2 c. finely shredded coconut (optional)

Mix hemp hearts, chia seeds, coconut flour, cinnamon, ginger &sea salt in a medium-sized mixing bowl.  If adding in the shredded coconut, add that to the dry ingredients as well.  Add in eggs, coconut oil, and stevia drops and mix thoroughly.  Form into 12 balls (about 1") and place onto cookie sheet lined with parchment paper.  Press the balls into the shape/thickness you want them to end up.  With this recipe, they will not rise, expand, or anything like that.  They will stay the way you put them.  Bake for 15 minutes at 350 degrees.  Let mostly cool on the cookie sheet to reabsorb some of the fat/oil goodness that may have leaked from the cookie.

Net Carbs (without optional coconut):  11.2g for FULL BATCH of dough
(for a 12-cookie batch, that is a mere .93g per delicious cookie!)

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Evan's M.A.D. Oatmeal:

• 1/4 cup hemp hearts
• 1/4 cup chia seeds
• Pure Stevia drops (I use about 5 drops)
• Cinnamon (I use about 1/4-1/2 teaspoon)
• Heavy Cream (a splash or two)
• 1 egg - beaten (optional)

Put hemp hearts and chia seeds in cereal bowl.  Fill with enough water to not quite cover the seeds.  Let sit for about 2 minutes to let the chia seeds start to activate. If adding the egg, add that to this mixture.  Microwave on HIGH for 1 minute.  Egg should be cooked, and most water absorbed/evaporated.  Fluff with a fork.  Add in cinnamon to taste, the "splash or two" of heavy cream to loosen it all up a bit and help cool it down for young mouths, and the Stevia drops (again...to taste).  Mix well and serve.

Net Carbs:  0g without egg;  .5g (less than 1) with 1 egg

Evan's Plate...A Simple Sunday

Today has been one of those Sunday's where I just didn't feel like making anything complicated for any meal.  Rather, the sunshine and blue sky were calling us outside to play.  SO... Evan's meals have been a bit boring by most standards.  But...wanna know the funny thing???  HE doesn't think so!!  When I told him what I made him for dinner...he pumped his fist and said "YES!!!"

His breakfast:
1 egg omelet-style filled with some cream cheese.  SO quick and easy!!  

Of course such a meal doesn't fill a kid for long...so he had a snack of 10 almonds followed by 10 pistachios and a 0g carb cheese stick.

His lunch:
Keto-Nachos - basically nachos, but with MAD friendly ingredients.  I admit...perhaps I was wanting nachos and an excuse to eat them for a meal.  For Evan, I used pork rinds instead of chips, then we build on from there.  Co-jack cheese, 0g carb pork sausage mixed with ground beef (80/20 for the fat for my little man), topped with some diced tomatoes, shredded lettuce, sour cream (full fat baby!!) and a bit of salsa.

His dinner:
1 egg omelet-style filled with some cream cheese (ringing a bell??) and pork sausage, a side salad and some dipping veggies with a Ranch dressing I just can't get enough of!  AND...some fluff for desert.

Evan's plate

BUT...back to the Ranch Dressing!!!  This ranch is AWESOME!!  Most of the ingredients for the dry mix many of us have in our pantry...and, once you have that, it is a SNAP to mix up a batch of this herby, creamy, deliciousness!  I found the recipe on Pinterest.  Yes, My name is Andrea, and I'm a Pinterest addict.  ("Hi Andrea!").  I cannot claim any stake in this recipe...I just make it, and love it, and make some more, and love it some more.

**NOTE:  When the ranch herb mix is mixed with the mayo & sour cream, there will be a carb count due to the sour cream, so be sure to take that into account.

ALSO...the recipe includes a "make your own mayo" recipe that uses honey.  I opt for the easy route and just use store-bought mayo, but if you want to give making your own mayo a try...be sure to replace the honey with stevia as there is a ton of sugar/carbs in honey.

To give credit where credit is definitely due, here is the link to the brilliant person who developed this amazing gift of ranch-y flavor:

http://www.healthstartsinthekitchen.com/2014/10/07/homemade-ranch-dressing-mix/

Fluff and M.A.D. Milk Recipes

As I was heading out to the bus with Evan this morning, he had a request for me.  He wanted me to make him more "fluff".  Fluff was one of our first sweet treat, simple recipes that has been a frequent flyer in our fridge.  It is super versatile, and while they think they are getting desert, you know they are actually getting the fat and some other nutrients they really need.  The downside...my older son, Ryan, will sometimes complain if Evan gets fluff after dinner.  "How come I don't get desert??".  Sugar is not a staple in our house and isn't usually allowed on school nights for Ryan.  I have explained to him that, for Evan, this isn't truly desert...its something he needs, and remind him of that conversation whenever he gets the "how come"'s.

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Evan's Fluff:

-16 oz heavy whipping cream (the heaviest you can find...we usually have 40% on hand)

-Liquid Stevia Drops (about 10-15 drops will usually do, but you can adjust as needed)

-Vanilla Extract

Put it all in a high-speed blender (Blendtec, VitaMix, etc) and mix the crap out of it until it stiffens up into a whipped cream.  You could use a hand mixer as well.  This is basically whipped cream without the sugar.  Can eat a serving immediately, but must refrigerate or this becomes a melty mess!  This recipe makes about 5-6 Evan servings.

Some Fluff variation ideas:

-Use flavored stevia drops.
-Add in a few fresh (or frozen) berries.  We have used the berry stevia drops and also add in literally just a few berries (strawberries, blueberries, raspberries, cherries, blackberries...whatever) and leave out the vanilla. BUT...there are lots of other flavors to try different combinations.  The possibilities are endless!

-Add in 100% cacao powder (really check that there is nothing else added).  Put in about a teaspoon to make chocolate fluff.  With this, I usually omit the vanilla.
-Add a few chopped nuts on top for a bit of crunch and pizazz!!

-I also usually add powdered calcium supplement to this to help him get a bit more calcium in his diet (as per his dietician).

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M.A.D. "Milk":

In a cup, one part heavy whipping cream and one part almond milk (or approximately).  Add in 2-3 drops stevia and a bit of water to help thin it to a more milk-like consistency.  Evan drinks this like a CHAMP with a straw...but of course then doesn't get the cute milk moustache.

 **Note...Almond milk does have a carb count, so be aware.

M.A.D. Milk Moustaches are the BEST!

Celebrity Epilepsy

I have run across from time to time a celebrity that has had, or does have epilepsy.  Today I decided to actually google it and see what turned up.  I encourage you to google it...you would be surprised how many lists of people came up!!  Danny Glover (actor) has epilepsy.  He experienced his first seizure at about 15 years old.  Ronde & Tiki Barber (football twins) had epilepsy as kids.  Hugo Weaving (actor) of the Matrix Trilogy and Lord of the Rings (think Lord Elrond) has epilepsy.  The lead singer of Evanescence, Amy Lee, has epilepsy.  Teddy Roosevelt, Napoleon Bonepart, Charles Dickens, Edward Snowden...the list goes on.  Even Prince (formerly known as "The Artist Formerly Known as Prince" who has apparently gone back to being just Prince) had epilepsy as a child and even wrote a song about it called "The Sacrifice of Victor".

This may not be important to some...but to me, it is.  Whether wrong or right, it just is.  To me, it is a living graphic that epilepsy does not define a person.  A child's potential does not disappear with this diagnosis.  Sure, life may be different, but even life itself is about adapting and overcoming!  Where there is a will, there is a way...and our kids will find a way to become who they are meant to be.

Welcome to M.A.D. About Childhood Epilepsy

Please explore the different pages to get to know us and our story.  My vision is for this to be a place where other parents can find some comfort in knowing they are not alone.  A place where curiosity is encouraged.  A place of sharing.  But not just for parents!  I also hope people who want to know more about our journey, about childhood epilepsy, or M.A.D. are curious enough to explore here.  Really, anyone!  No exclusions!  I am by NO means an expert on epilepsy.  I am not a doctor or neurologist or nutritionist.  I am simply a mom trying to be an expert on my son's epilepsy and on what helps him best, but I am constantly learning, tweaking, adjusting.

Evan was 2 1/2 when he was diagnosed with Epilepsy.  He is now 6 1/2.  He is lively, growing, learning, and doing pretty darn well if I do say so myself (but I may be biased).

Evan in Nov. 2010 when diagnosed.

A couple years ago we became curious about the different Ketogenic diets after not being satisfied with the seizure "control" (rather a lack of!) with the meds he had been on.  After seeing how affected he was by the first medication (learning was definitely stunted and affected...see "Our Epilepsy Story"), we were NOT interested in introducing more medications if not absolutely necessary.  You can read more about our M.A.D. journey in the above tab, "Our M.A.D. Story".  We have come to a place of relative balance with his medication, the Modified Atkins Diet (for seizure control), and naturopathic medicine.  He does still have seizures, but they are not nearly as severe as they once were.  AND he is healthy, happy, and developing like crazy...which all mommies love to see!  He enjoys riding his bike, taking swimming lessons, and being as normal of a kid as he can be.  Of course, our rule for both our kids has always been, "if you are playing on or riding something with wheels...HELMET!", and we have taken some precautions with his swimming lessons as well.  We are fortunate in the fact that (so far!) he has some pretty tell-tale signs when going into a seizure, and he does not (so far!) experience drop seizures.

A happy (ok, cheesy!) 6 year old Evan

Comments and questions are ALWAYS welcome!
If you are new to this journey...please know, you are NOT alone!

Stay strong, stay curious, stay informed, stay connected, and stay supported.