Sunday, July 26, 2015

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.

Wednesday, July 8, 2015

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.