No, we still don't do sugar! Happy Halloween

Jack was on the ketogenic diet for epilepsy for 3 years, starting when he was 14 months old.  People hear keto and say "oh, I do that" and let me tell you, NO YOU DON'T!  What you do is Atkins or low carb.  Which is great and a good way to cut back on carbs and processed foods (if you do it the way to cut back on processed foods).  But until you weight every speck of food on a gram scale to a 10th of a gram, have to be hospitalized to start the diet, have blood work every 3 months to monitor, check ketones to make sure you aren't acidic, and be closely monitored by a dietiatian, you aren't really doing what is known as the ketogenic diet.

Okay, I'm off my soap box about that.

But while he was on that we went to a play date that was also a fundraiser for a friend of ours.  It was quite large, with at least 25 other mom's and their babies through preschool aged kids.  I was doing my best to keep up with Jack, but it was super crowded and I was having trouble not stepping on small people.  This was after he was walking but pre-surgery.  He went around a corner and I was quickly following, but another toddler followed by her mom was coming the opposite direction so I let them through.  That 30 seconds or so was enough time.  Another mom gave him a raisin.  I dug it out of his mouth and as I did he went limp in my arms and then stiff and started to seize.  I scooped him up and did my best to scramble for an open space.  I get slightly claustrophobic, plus I didn't know anyone there and everyone was completely ignoring me.  I was screaming his name and it was as if we were invisible.  Of all the seizures he had, it's one that really sticks out.  One stupid raisin, 25 other mom's around all unwilling to help, I felt so alone and helpless.  I pretty much stopped going out with anyone who didn't have a special needs child after that for a very long time.  I was traumatized by the lack of response from anyone.  I laid my seizing child down on the floor and was checking his breathing, yelling his name, timing a seizure, and no one even asked if there was anything they could do to help.

(Yes this is an old video, but his seizures still look pretty much like this with the blinking, I just don't try to catch them on video anymore because he tries to hide them from me now.) 

So all of that was leading up to why we don't do candy at all.  Well, if he has a seizure from a raisin, what do you think actual sugar will do?  There was another time on keto that he had a piece of cantalope and a few cheerio's at lab school and he had 3 seizures that afternoon and I could not figure out why.  The teacher told me the next day that he got into that snack.  She felt pretty awful when I told her about those seizures, because yes, it does have that big of an impact.

He has been off keto for a long long time.  He has cake at birthday parties!  And pizza!  And the child can eat.  He eats a TON!  But cake at least has eggs and fat and other things besides just sugar.  candy is pretty much just sugar.  So on Halloween he will get to trade his candy for a small toy, and get some sugar-free candy (made with xylitol and stevia, we don't do crummy artificial sweeteners either as those can sometimes be a seizure trigger for some people).

So no, we don't do candy on Halloween, or Christmas, or Easter, or any other holiday.  Seizures don't care that it's a holiday.  Holding my child while he seizes is the most helpless, worst feeling in the world and I will do whatever it takes to protect him.  I tend to have to spend a lot more (both money wise and energy wise) than the average parent to make it so that my kiddo doesn't feel like he is horribly different than everyone else.  So that he still gets enjoyment out of it, but hopefully doesn't have brain damage because of seizures.

But tomorrow we will get together with friends!  We will get all dressed up, go trick-or-treating!  The kids will trade their candy for sugar-free candy and a small thing they picked out off of Amazon and they will have a blast running around with friends!