Keto Anniversary

November 1st (last Friday) was our 1-year Keto Anniversary.  Hard to believe that we have made it 1 full year on the Keto diet and 18 months on diet therapy.  It is getting to the point where it is hard to remember what life was like before we had to measure every ounce of food we give to Joshua.  I remember our first weekend on MAD like it was yesterday and I really didn't think we were going to make it.  That first month was so awful and he got so sick that I wasn't sure we could stick it out.  A month after starting Keto he got too ketotic and ended up in the hospital and again I wasn't sure we could stick it out.  But, we did and now here we are. 

As I sit here reflecting on the last year and 1/2 I am torn between being incredibly grateful for the diet and annoyed at how it has transformed our lives.  I will be forever grateful for the diet and how it has stopped Joshua's seizures.  I never want to go back to him slamming his head into everything from the drops, having countless absence seizures during the day, seizing for the first hour during every nap and every bed time and being so high on drugs he could barely talk and having no energy to do anything, not even play.  The medications did NOTHING to stop his seizures and we were slowly watching him wither away from us.  I will never regret going on the diet, but there are days I wish we were not on it and wish we didn't NEED to be on it.  Administering the diet has gotten easier with time, but it will never BE easy!  It is hard to reconcile loving something so much, but at the same time hating it.  It is a strange combination and when I try to explain it to others I usually get a funny look because all they can see is the great things the diet has done for Joshua. 

To say that this diet is difficult would be an understatement.  When using food as medicine everything changes and it takes on a whole new meaning.  Until you are not allowed to have certain foods, you do not realize how much food is everywhere.  We have to think about food all day every day in everything we do.  Most people do this with infants - they have to take bottles and ensure they have enough food or watch the clock to nurse their babies, etc.  It is an accepted part of life and most mothers do not get annoyed by it because that is just how it is.  However, when it is like that with an almost 6 year old and you have no idea when it will end, it can be a daunting task.  Also, infants cannot get up and get into food on their own like Joshua.  We cannot leave the house without thinking about food - this is some of our thought process.  How long do we think we will be gone and how many meals does that equate to?  Once we figure that out, we have to decide "where" will we be and what we will have access to - if we are going shopping and we won't have access to a microwave then we need to know we need to pack meals that do not need to be heated.  What if we are gone longer than we anticipate?  Pack an extra meal.  How many sodas will he go through or want in the time we are gone?  Pack those.  Will his meals require oil scraping?  Yes - pack the scrapers and the wipes to get the oil off his hands.  Do his meals need to be kept cold?  Yes, pack the cooler and all the packs.  Are we going someplace there will be food he will want to have like the other kids (for example a birthday party).  Ok - make and pack a special snack - cupcake perhaps (that takes 1 hour to make one).  Packing to leave the house for his meals can take anywhere from 30 minutes - 2 hours depending on how long we are going to be gone and what we want to take.  It gets easier and faster with time, but there is no grabbing the car keys and "just leaving" at our house.  EVERY trip has to be carefully planned out, even if just running errands for the day.  We have gone out to eat as a family less than a handful of times over the last 18 months.  It is just too hard on all of us.   Instead, Chip and I take turns taking Cole out for special meals.  It doesn't seem like food should be a big deal and that we should be able to stay away from it, but it is everywhere, even at the place where he gets his hair cut "No, he cannot have a sucker as he is on a medical diet".  It should not bother me, but it does - every time we have to tell him "no, that is not on your special diet" which is constant.  We can't even go get our pictures taken with Santa at Christmas time without having to fend off hot chocolate, cookies and a candy cane.  Shopping at Costco on "sample day" - forget it, I would rather just turn around and go home.  Parties at his school full of food, snack time in his class EVERY day, rewards for doing a good job in OT - food (except for Joshua), Harvest night at school - food everywhere, Valentine's Day Party, Halloween party, Christmas parties and the list goes on and on.  We stay at home a lot because with Joshua's cheating it is just a lot easier for us to control what he has access to and what he might be able to find.  Going to other people's houses is very stressful because you never know what he will find - other people obviously have food in their garbage - not at our house - so he goes hunting.  He steals food off our plates at home so he is no longer allowed to eat at the dinner table with us most nights and I hope and pray I am not causing other issues in his psyche.  The hardest thing for me overall is denying him food when he is begging and crying and telling me he is hungry - it is hard to describe how it feels to deny your own child a basic necessity because you know it is in their best interest.  Because his diet is calorie restricted we can only feed him so much per meal and per day and when he's done, he's done.  He doesn't always understand that and some days he is more hungry than others.  We all struggle with this and I hope we all make it out the other end. 

I am in no way trying to talk bad about the diet or discourage others from doing it.  I will never regret it and I owe all of how well he is doing to the diet.  I just wanted to express that living with this day in and day out for a year and 1/2 (and for the foreseeable future) is not easy and we are tired.  We look forward to the day that Joshua will be off the diet and we don't have to think about food every day, all day.  I can't wait for the 4 of us to be able to eat dinner together out at a restaurant or be able to take Joshua out for ice cream or go see Santa without sheer panic and feeling like I have to tackle the elf who is trying to hand my son a candy cane.  We will get there someday and until then, we will continue on.  And, if I ever wrestle him to the ground to take food out of his hand, please know that I am doing what is best for him, even if it seems a bit crazy.  (You should see the looks we get in public when we have to take something away from him). 

18 months on diet therapy and 1 year on keto - who knew that it would be the best thing for him and the best thing I ever researched, but also at the same time, one of the things I loathe the most. 

To all my epilepsy peeps - keep fighting!  There will be a cure some day and until then I am thankful that keto is available and is working for my son.