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Infant Anorexia (A Diagnosis that’s Every Bit as Scary as it Sounds)

Infant Anorexia. Those two words should never be combined together.  It sounds scary,  doesn’t it?  It is!  Imagine how shocked my husband and I were when our daughter’s doctor said those words when referring to our precious 6 month old. 

The phrase Infant Anorexia usually causes people to stop and stare with their mouths wide open. It is shocking to hear.  The medical term refers to babies who refuse to eat.  But not in the same way, or for the same reasons, that adults who have Anorexia refuse to eat.  

My daughter didn’t become obsessed with her weight, or a desire to be skinny.  She wasn’t watching her calories, carb intake, or working out incessantly.  She was only 6 months old when we got that diagnosis, for goodness sake!  But the importance of understanding her disease was just as crucial as anyone who gets the diagnosis of an eating disorder.  As hard as it was to believe, our baby did have an eating disorder.  

How did we get here? 

How did my little princess get diagnosed with something so frightening?  When she was about 3 months old,  she started refusing to drink her bottles.  She would smile at me and push the bottle out of her mouth.  She would arch to get away, turn her head back and forth, and cry if I continued to encourage her to eat.  This is the opposite of what most of my mom friends dealt with- their babies couldn’t get enough food.   Why was mine refusing to eat?  

I had no idea what was happening.  Thankfully, I was still in contact with a friend from high school, who happened to be a doctor, and also had a child around the same age.  Without even knowing that my daughter was refusing bottles, she happened to mention reflux to me.  I looked it up, and realized my baby had nearly every symptom.   We went to our pediatrician, and my little girl was diagnosed with GERD (gastroesophageal reflux disease).  This is quite common in infants, and there are several medicines and homeopathic remedies to help babies feel better.  

I was relieved that there was an ‘easy fix’.  Or so we thought anyway.  We started the recommended medicine, however, it wasn’t working.  We increased the dosage, and still, those symptoms continued.  So we were prescribed a different medicine, hopeful that this would be the miracle cure for her pain, because she was acting this way due to discomfort while eating. 

This Is Not Easy

I cannot describe the guilt I felt as a mom, trying to basically force feed my daughter at EVERY feeding.  Eating isn’t an option, it’s a basic need.  The fact that it hurt her to drink every single bottle was heartbreaking.  It didn’t help either, that a few well-meaning friends criticized our use of medicine.  Meds were an absolute necessity.  They were the only thing stopping the pain in our daughter’s stomach, esophagus, and throat.  

Our next step was to see a Pediatric G.I. doctor.   He put my oldest on a different medicine, saying that an unwritten side effect of her previous med, is something called Infantile Anorexia.  Say WHAT?!  The medicine that was supposed to help her may have exacerbated her symptoms?!  I asked what felt like thousands of questions.  I had never in my life heard the phrase Infant Anorexia before.  

The doctor explained that basically my daughter learned that eating hurt her, so she stopped wanting to do it.  Even though the pain may be gone from the actual reflux, it didn’t matter.  In her head, her little brain was smart enough to understand that drinking hurt, so it was better to just not do it at all.  Obviously this is not acceptable. How in the world do we convince our 6 month old to eat?  We can’t explain logically why she needs to eat.  We can’t bribe her, because she doesn’t understand what’s happening in her body or brain.  

What Do We Do Next?

My biggest question was, “How do we get her to eat?”  Our doctor was amazing, and willing to try anything to help us.  We tried thickening her feeds, giving her less in each bottle while feeding more often, giving her more while feeding less often, burping her more often, burping less often.  Sadly, none of these things really helped. 

I did what any parent in this century would do, and I turned to the internet.  It was 2010 at the time, surely there must be a plethora of suggestions out there about something affecting babies.  WRONG!  There was hardly ANY information at all about this topic!  I was dumbfounded.  How is it possible that there is so much out there about everything under the sun, but this?  

So, my husband and I got creative in tricking our baby girl to eat.  And it definitely involved tricks.  When we would finally find something that worked, she would catch on, and it wouldn’t last long.  We were constantly battling Infant Anorexia.  It was exhausting, heartbreaking, guilt inducing, and draining.  

Torture for Everyone

Honestly, I feel like I missed out on enjoying months of her life due to the Infant Anorexia.  It robbed us of precious moments, and happy memories.  Every day, I was filled with anxiety about how to trick my daughter into eating enough to maintain a healthy weight.  It was like a full-time job.  Motherhood is never easy, but this daunting task was almost too much for me to bear.  

It felt like we tried everything under the sun, and nothing really worked.  Some days were better than others, but there was never a rhyme or reason to it.  I started posting in parenting chat rooms, and sharing our story, because I figured there had to be other parents out there dealing with this issue, even if it wasn’t being talked about much.  I wrote about what did and didn’t work for us.  But this was uncharted territory for our family, and it was scary.  

One of my biggest fears at the time was that she would completely stop eating, that we would run out of tricks to try, and be left with hospitalization and a diagnosis of failure to thrive.  This thought crossed my mind multiple times a day.  I joked (because at that point it was either laugh or cry), that I would end up in a padded room one day, if she didn’t start eating better.  

Turning a Corner

Thankfully for us, all our tricks were enough to keep her at a somewhat steady weight for her size.  She was barely on the chart, but thanks to understanding doctors, they weren’t overly concerned.  They never focused on her weight, but on her overall health.  This helped me as well, because my mind was always centered on my daughters next bottle and how much she would drink for that day (which was always grossly less than other babies her age). 

My husband and I were hopeful that when she started eating solids, the Infant Anorexia would disappear… but we were wrong.  Our lovely little girl refused to eat baby food, finger foods, and solids, on and off, depending on the day (or the tide and the moon- who knows!?).  

We dealt with Infant Anorexia for years.  Some days and weeks were great, some were the hardest days I ever had as a mom.   I never gave up hope that one day this would be behind us.  Thankfully we had amazing friends that would suggest things or offer to feed her (because after so long of forcing my daughter to eat, the heightened anxiety it produced in me was evident to her and made it even harder to feed her).  Those friends got me through some very dark days of crying, begging, and (although I’m not proud of it) literally throwing my baby girl’s bottles across the room in frustration (yes, I know that didn’t help- but it felt good for a brief second in that moment!). 

We Made it Through 

As it does with most children, eventually my daughter outgrew her Infant Anorexia (although not as soon as we had hoped!).  It wasn’t like she magically woke up one morning willing to eat though.  It was a very gradual willingness to eat more and more without coercion.  Now she’s going into third grade, and a fairly good eater who is happy and healthy.  

If your child is showing signs of reflux and/or Infantile Anorexia (or you have any concerns at all), be sure to see his/her pediatrician immediately.  Our case is pretty rare, but certainly not unheard of.  Thankfully in the 8 years since our daughter’s diagnosis, there have been many advances in the medical field.  Both doctors and the internet finally have more information for parents about this scary disorder. If you find your family in this situation, don’t be afraid to talk to others or ask for help.  I can’t promise that it will be an easy journey for anyone involved, but I can say that eventually you will all get through it and move forward with better days ahead. 

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