Tuesday, December 10, 2013

Holidays and Eating Issues {Ketogenic Diet and Feeding Tubes}

 It's that time of year again. The time when everyone gets together to celebrate holiday traditions, with food. Lots and lots of food. First we have two holidays, Halloween and Thanksgiving, that are pretty much JUST food. That's the main point of both of them. Then we have Christmas, which isn't mainly about food, but seems to have food at the center of most of it's celebrations. Candy canes, gingerbread houses, sugar cookies to decorate, followed up with a big Christmas day feast. Most of us joke about all the weight we gain this time of year. I always used to look forward to Christmas food. We get all sorts of things we never have the rest of the year. I mean there's really nothing keeping us from eating candy canes all year around, but we don't. Because they are a special Christmas tradition.

 All of this food has a whole different meaning when you can't eat it. Instead of looking forward to Christmas parties, I dread them. All of that food to keep out of my son's mouth, makes parties incredibly stressful. Owen spent over 2 years being tube fed. During much of that time, he couldn't have anything by mouth at all. He was such a high risk for aspiration that sucking on a candy cane could have put him in the hospital (thankfully we only had one hospitalization due to aspiration pneumonia). Last year it was finally considered safe for him to eat, but after all of the years of not being allowed to, he had an extremely small repertoire of things he would actually eat. In some ways it has made the Ketogenic diet easier to follow, since we were already used to bringing special food for Owen with us everywhere.
 This year, with him being on the Ketogenic diet, it is hard to be around food again. Owen can't have anything that isn't weighed and measured and calculated into his diet plan. Even if a food is something he would be allowed to eat, black olives for example, he can only have them if they are worked into his meal plan and it is time for him to eat. Sometimes I just wish every gathering didn't have to include food. That isn't really fair to everyone else though. One party we attended last year had a special "allergy table" for kids who couldn't have certain items. Owen can't really sit at an allergy table however, since pretty much the only things he can eat are highly allergic. The vast majority of his food contains tree nuts, eggs, and dairy (cream and butter). Most of Owen's food is gluten free, but a lot of gluten free foods actually contain more carbs than regular meals (rice flour has a lot more carbs than wheat flour), so he doesn't fit in there either. I haven't really figured out a solution, we just remain extra vigilant any time food is around.
 The good news is that Owen is starting to "own" his diet now. He has realized how much it is helping him and will ask us to put things he can't have out of his sight. He'll also say no when he's offered something he knows he can't have. The other day he let me know that someone had left a pancake out on the table and asked me to pick it up. Pancakes were one of Owen's favorite meals before the keto diet. Actually they are still one of his favorites, but now his pancakes are made out of egg and macadamia nut, and while he likes them, he'd still prefer regular ones. At our recent Thanksgiving meal, Owen refused food when offered (by the only person I forgot to warn ahead of time).
 I read an article a while ago, where the author was complaining about how everyone seems to be on a special diet or have eating restrictions and how hard it is to host gatherings. On the one hand, I understand completely. It's impossible to serve a meal that is gluten free, nut free,dairy free, paleo, diabetic friendly, vegan, and ketogenic approved, especially one that will go through a feeding tube. On the other hand, having a child with such intense eating issues, I think we need to remember that food can literally be a life or death matter. Having a pot luck where everyone brings a dish they can eat and having an area that doesn't have food lying around can go a long way toward making everyone feel accepted and welcome.
 So far, our Holidays have gone quite well. Our family and friends have been very accommodating about Owen's needs. We haven't had some of the issues I've heard other parents talk about. I still worry about taking him to larger gatherings though.

1 comment:

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