“I Don’t Wanna Eat!”

I like to try to write about interesting or helpful things in the context of what I am discovering on my journey with Grace, and I don’t want to forget about my other girls.  I have learned all sorts of things from Milly, my ASD girl, and even my other two daughters.  Attempting to live in the moment, practicing mindfulness, and learning gratitude in the midst of something like childhood-onset schizophrenia are things that are re-shaping how I view others and circumstances.  None of this is easy, but I am submitting to this process.

I have learned something new recently, and it has surprised me.  It’s associated with a word ripe with meaning.  What’s the word? Anorexia.  Most of us have probably heard that word.  Perhaps you think of Karen Carpenter or the pro-ana movement.  Maybe you or someone you know has struggled with anorexia nervosa.  I’m not, however, talking about anorexia nervosa.  I’m talking strictly about anorexia which is defined as the lack or loss of appetite resulting in the inability to eat.  This sort of “medical anorexia” is different from the eating disorder and mental illness anorexia nervosa.


The red bracelet worn by those who identify with the pro-ana movement as well as identifying as ED friendly (eating disorder friendly).

For example, anorexia is not uncommon in certain illnesses like advanced cancer.  The appetite decreases, and one simply can’t eat.  I take a medication for migraine and seizure control that acts like an appetite suppressant, and anorexia is actually listed as a side effect! Every time I see my neurologist she always gives me her scariest neurologist look akin to the scary Mother Look, and says, “How’s your weight?” She’s well aware that Topamax causes anorexia, and, admittedly, I do struggle with it.  I can drink one cup of coffee in the morning and feel no urge to eat for ten hours.  My appetite has diminished to almost nothing.  It finally caught up to me a few months ago, and I became malnourished because I was…anorexic.  I simply was forgetting to eat because I had lost my appetite, and the stressors in my life along with an illness had finished off what the drug had not.  A friend of mine told me that I looked emaciated.  I probably did, and it wasn’t purposeful.  I am now in the middle of attempting to fix the problem, but it’s hard.  I don’t want to eat.  I’m not hungry.  I quite literally have to force myself to eat, and this isn’t an eating disorder.  I’m not purposefully depriving myself of food due to a desire to lose weight or because I need to exercise control over something in my life.  I simply have no appetite and haven’t for years thanks to the side effect of a drug that has allowed me to reduce my migraines from 20 a month to less than 10.

Why discuss this? Grace is exhibiting signs of anorexia.  She doesn’t want to eat either, and I’ve recently learned that anorexia is common among psychotic disorders as is anorexia nervosa.  I didn’t know this.  When Grace’s psychosis is under control, she is more willing to eat.  When she is not feeling well, however, she refuses.  If I can get her to eat half a piece of toast, then I have accomplished something quite amazing.  This morning, she awakened in a very sad mood.  She went to bed last night with one of her migraine-like headaches which is always indicative of mood instability.  She refused to eat anything for breakfast, but Grace is experiencing hypoglycemic symptoms which means that she must eat.  I practically had to threaten to take her back to the hospital if she didn’t choke down one piece of toast with peanut butter and Nutella (it’s the Nutella that convinced her to eat).  She stabilized a bit and apologized for “being difficult”.  I get it.  It’s hard to eat when the food just looks so damn unappealing.  I live with this daily.  When I go out to lunch with my friends, they all tell me that they feel like “pigs” because they eat a normal amount of food while I struggle to finish a side salad.  It’s not a good thing.  My hair was falling out! I thought it was stress.  It wasn’t.  It was malnutrition.

I’m trying to help Grace see the value in eating nutritious food even when she doesn’t want to eat, but she’s positively intractable when her mood bottoms out.  The problem with this is that her mood lability is caused, in part, because she’s not eating.  This is similar to me and my migraines.  I have to eat to maintain a stable blood sugar level, and that stability helps prevent migraines.  If my blood sugar bottoms out, I’ll probably get a migraine so I need to eat something every two hours…just like Grace.  Chronic migraine disease is managed through diet, exercise, and sleep much like mood disorders.  The brain is a funny thing.

So, what can I do to get my kid to eat when she’s resistant which is almost daily? When I see the hypoglycemic crash, hence, the mood crash I give her hot chocolate right away in the form of a trip to our local hangout, Caribou, wherein we are regulars.  She will outright refuse to eat or drink a damn thing I offer her at our house.  If you think I’m spoiling her, then think again.  Try bargaining with a schizophrenic child in the middle of a sugar crash.  Her decision-making faculties are completely shut down at this point, and she’s usually snurping and crying when I bring her into the ‘Bou.  The baristas know us all by name, and most of them know that Grace is not well.  A few of them know her issues, and they know why we’re there if Gracie is crying.  She’s there for her hot chocolate fix.  They whip up a kid’s cocoa replete with whipped cream and tiny milk chocolate chips.  It’s usually done in record time, ready for her trembling hands, and met with my relieved face.  In five minutes, Grace is usually much improved, mood stabilized, and ready for some real food–“I think I’m hungry! I’m sorry, Mom.  I don’t know what my problem is.”  This is how I get her to eat when she outright refuses because, so far, it always leads to her becoming willing to.


Our saving grace…

I have done some research, and I think I will be booking an appointment for both Grace and me to consult with a dietician rather than asking my neighbor for a drive-by opinion.  After reading a fair amount of articles on anorexia and schizophrenia as well as observing Grace’s emerging disordered eating patterns, I want to get ahead of this now.  The more I can educate her while she’s young and still believes me, the better.  Plus, I really need to get a handle on the side effect of my own medication.  It’s simply not good for me particularly since my fasting glucose number was high.  That’s what comes of having big babies.  Grace was just shy of ten pounds at birth, and Doireann was a little over nine.  Yeah, they looked like tiny Michelin men.  And, yeah, OOOOOOOOOOW!!!!!


Eating Disorders in Schizophrenia


8 thoughts on ““I Don’t Wanna Eat!”

  1. I struggle with the same thing being on topamax (and having the dose increased and being terrified to decrease it again since I can’t function with migraines). It is scary to see your child start to fall into the anorexia patterns, my daughters reasonings are due to her medications right now. It seems like a celebration when she even finishes a glass of something other than water some days. She’s six, super tall, and if she keeps her weight above 40lbs at weigh ins, everyone high fives her. It’s so unfair what out kids have to go through. I think you have the right idea to be proactive by finding a dietitian. Just like any disease, if its a habit at a young age, we’ll better manage it as an adult= )

    • Well, anorexia, I think, is a symptom or side effect brought on my medication for people, and becomes a problem during times of psychosis and mood instability. Anorexia is the medical term for “I lost my appetite”. It’s not the same thing as anorexia nervosa which IS a disorder. It’s odd because some of these meds are supposed to cause an appetite increase, but I do wonder if that’s in adult patients. What are the effects on children? Grace has gained weight which is good, but I’ve started supplementing her diet with PediaSure because of eating habits (or lack thereof). There are times when she can’t even swallow.

  2. As a girl who has lived with binge eating disorder most of her life, it is a shock to the system to do a 360 degree turn and suddenly have anorexia. I was prescribed Topamax, as I was 400 pounds and I needed something to help curb my appetite. Well, now I don’t eat. At all. In two weeks I have lost ten pounds. And I’m starting to enjoy it. Which scares me the most. Is there anyone that can offer me some advice? Please?

    • Hi there,

      Drug-induced anorexia is tricky, isn’t it? What is your Topamax dosage, if you don’t mind my asking? I still take Topamax myself, and it’s something I manage daily. What I can recommend is that you think in terms of nutritional quality rather than calories. This is the best way to manage drug-induced anorexia. It’s a matter of making sure that everything you eat counts. If you go about it in such a way where you live on empty calories, you will become nutritionally deficient. So, it’s about packing in the nutrition with each meal. And eat smaller meals. I can’t eat very much when I eat. Smoothies are a great way to accomplish this. I rarely eat junk food or sugar, and I don’t drink soda. Empty calories. It really is a paradigm shift. This will help.

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