DIY Feeding Therapy, what?

So, maybe Instagram sent you here, maybe this post sent you here (about my struggles with eating), or maybe you just stumbled along, but feel free to read on and check out how I put a DIY spin on Feeding Therapy.

I met a new gastrointestinal (GI) doctor early this year, and she’s awesome, she’s exactly the person I needed on my team. During one of our early visits, she recommended I see an Occupational Therapist, Feeding Therapist or Nutritionist to work on eating. Now, when she said I laughed because I am studying Occupational Therapy and I work with kiddos and coworkers who have taught me so much about feeding therapy. But feeding therapy for me? No way was I going to do that! It felt so undermining for her to even suggest that. The weeks following that appointment, I was asked to keep a food & weight journal and I realized for the first time how terrible my eating & weight had gotten. When I presented her with my food & weight journal, she gave me my options; feeding therapy or feeding tube. I was so adamant about not having a feeding tube that I started this process of what I’m calling DIY Feeding Therapy. I call it that, because I am doing this with little medical guidance (for now) and I’m not a professional. I’ve been using my knowledge from working in a related field, research I’ve done, books I’ve read, OT’s I’ve talked to, etc, etc, etc.

I started therapy about five months ago, give or take. At that point I was actually doing really well, compared to where I am now, but it still was considered to be Failure to Thrive status. I was consistently getting in about 700-900 calories a day, by mouth, eating a variety of foods, textures, temperatures, etc. From there, I had some major set backs that led me to eating about two foods, one texture and getting in less than 500 calories a day. Anything that strayed from that one texture, or two foods, I was just done trying for the day.

After those set backs is when I got really serious. I went out and bought an electric toothbrush, that was step one. At this point it was just about getting used to stimulation in my mouth, without vomiting. This is something I learned from work, and then through my own research. I felt really silly trying this, it’s something suggested for my toddlers at work, but it helped! From there, I bought gum and lollipops, so not even food, yet. The purpose of the gum was to work on jaw strength, getting my body used to chewing but not swallowing. The lollipops were another idea to get used to having stimulation, without the GI upset of actually consuming food. These were really tricky to start, I kept aspirating, gagging and vomiting but they did eventually help.

The next step, was liquids. I drank water like I was dehydrated camel throughout this whole process, but that was it. I was given a resource, which provides guidelines for introducing new foods to infants. I started slowly thickening tolerated liquids. It’s going, it’s working, but it is still a work in progress! My goal is to tolerate a milkshake, I love milkshakes! Right now I can’t, I’ve tried smoothies and shakes with no luck. It’s just too heavy. One huge self-established milestone I met while working on thickened liquids was drinking through a straw without gagging and aspirating. So I can proudly say I have mastered this toddler skill at twenty years old.

After liquids, comes solid food. This is where I’m at. It doesn’t go much further than this.  One big factor with actual food is to expose myself to it everyday, so I cook, I try not to avoid eating-situations, and I feed snack my kiddos at work — which pushes so many boundaries, have you ever seen a toddler eat, or 10 at once? Talk about exposure!

Everyday, I pack a little lunchbox with a variety of options when I leave the house. I always have my fallback items: applesauce and drinkable yogurt or chocolate milk. I always try to include a lunch item (like a sandwich), fruit, and/or cookies or crackers. I usually don’t eat any of it, which seems foolish. Sometimes I’ll try a bite or two, sometimes I’ll drink a few ounces of yogurt or milk and that’s enough. At least I can say I’m trying!

It’s not an easy or quick process, at times it’s scary, painful, and totally discouraging but I work everyday to push my comfort zones and I’m making progress, so I’m not going to stop anytime soon!

Advertisements

“At some point you just have to let go of what you thought should happen and live in what is happening.”

I wasn’t always open about my struggles; it’s only been about a year and half, give or take, since I started to publicly share that I was dealing with a chronic illness. I always viewed my illness as a weakness — something that made me different and less — but since I’ve gone public with it, I’ve learned it’s much more than that.

One of the biggest obstacles I face is eating, (eye roll). It literally consumes all of me, at all times. It’s not an easy thing to struggle with because it can, and does, affect your entire body. There’s so many components to this, I don’t even know where to start. Basically, I get in under a thousand calories a day, orally, and that’s an overstatement. My gastrointestinal doctor calls this Failure to Thrive Malnutrition. 

The medical side of my eating struggles come from a combination of things. For starters, I have Gastroparesis, meaning the involuntary muscles used throughout my digestive tract are partially paralyzed. What this actually means, is that I am nauseous 24/7, I have intense stomach pain most days and I vomit often. This causes me to have trouble maintaining my weight, blood sugar, and nutrition.

Then there’s the psychological side of it. The psych has two contradicting pieces to it. 1) I struggled with an eating disorder for quite some time as a younger teen. 2) I  have been conditioned to become extremely fearful of eating because every time I do, I have pain, nausea, vomiting, etc. Unfortunately for me, the eating disorder developed way before the inability to eat, so I tend to still struggle with the idea of gaining weight, even though I know I’m currently at an unhealthy weight.

And then, if medical and psychological components isn’t enough craziness for one body, there’s a neurological aspect as well. This is called Sensory Processing Disorder, it’s something I’ve struggled with my entire life but is extremely present when it comes to food & eating. Sensory Processing is a very complex system, but a super basic way to put it: it’s the way your brain processes sensory stimulation, such as taste, smell, touch, movement, etc. This makes it really hard for me because food stimulates so much at once; there’s smells, tastes, visual stimulation, there’s textures, and honestly it’s just overwhelming.  I’m cringing just writing about it. The other neurological struggle I have is that I don’t often feel hunger, so I don’t have the desire to eat. This is more closely related to the Central Nervous System, but loosely related to Sensory Processing Disorder. Interoception is sometimes considered to be the eighth sense, by definition “It is the sense responsible for detecting internal regulation responses, such as respiration, hunger, heart rate, and the need for digestive elimination.” 

I hate it, I hate everything to do with eating. Going to restaurants, parties, even daily lunchtime with coworkers makes me incredibly anxious. Due to this fear and anxiety, I tend to avoid situations and I’ve developed aversions to all food. For a while, I would get sick at the sight or smell of food. I work relentlessly on trying to increase my food intake, but it’s a slow process. Check out my “DIY Feeding Therapy” –> here!