What I learned from my son's experience

Our son, Max, was diagnosed with severe GERD (gastroesophageal reflux disease) at the age of 4 months.  I wasn't breast feeding and despite trying every brand of formula on the market, he was barely eating.  After months of trial and error we were finally introduced to a formula, called Neocate, which seemed to work for his tummy.  Neocate is an amino acid based formula, or elemental formula.  The proteins contained in Neocate are in their simplest and most broken down form, making it easier for the body to process and digest.  They are also the least likely to trigger an allergic or adverse response.  Not that it mattered but Neocate wasn't covered by insurance, only came in a sample size, and cost $85/can.  Of course we would have paid double (triple!) if it meant he was getting the nutrition he needed.

Neocate worked for the most part until he was about 10 months old.  Once we started the transition to solids, Max developed a debilitating fear of food in any form.  He wasn't sleeping for more than 45 minutes at a time.  He was irritable and at times inconsolable for hours on end.  I remember holding him in my arms and walking around our house for what seemed like forever, and yet he just kept crying.  Despite his pediatrician telling us everything was fine, I knew it wasn't.  Something was wrong, and despite all of my pleas, no one seemed to believe me.

Just after his first birthday, Max was hospitalized at Doernbecher Children's Hospital.  He had gone from the 25th percentile for weight down to the 3rd.  He was diagnosed as "failure to thrive" and given an NG tube (a thin, soft tube that went up his nose and into his stomach).  And yes, watching my son get strapped down and a tube forcefully threaded up his nose was even more horrific than it sounds.  But then having to do it at home by ourselves for the next 2 months ... well, it was absolutely terrifying.

Initially I felt like it was my fault, that perhaps I hadn't done enough, said enough, complained enough, for someone to take my concerns seriously.  But then I remembered all of the phone calls I had made, frantic voicemail messages left on the after hours line, a notebook full of research and questions, and oh so many appointments.  At one point they recommended bringing him in every other day for a weight check, which made us that much more nervous and concerned, but of course we did it.  And then how after a while the nurses started asking us why we was in the office yet again, and my increasingly enraged reminders to them that no, he still wasn't eating.  One look at my son with a tube up his nose and clearly everything was NOT fine.

The reality of the situation was my son was in pain, I didn't have answers, and I felt helpless.  Per the GI specialist, we had done what was medically necessary (the NG tube).  But I had become increasingly skeptical that he hadn't outgrown at least some of the symptoms of GERD, and perhaps we were dealing with something else entirely.  Until this time, we had been relying solely on what the doctors and nurses were telling us about Max's condition.  But no one - not even our inner circle of health care professionals - could tell us why Max wasn't able to eat on his own, and more importantly, how he was going to get better.

As the weeks dragged on, the stress of having our son on a feeding tube (both emotionally for us, and physically for him) was just too much.  Once I stopped second guessing and blaming myself, I became convinced that we needed a different approach - something less invasive for sure, but also something more personalized and more proactive toward an eventual solution.  I was at the mercy of others for the care and treatment of my son, but when you have little to no faith in the people providing that care, I knew we needed to look elsewhere for help.

With no one willing to look beyond his initial diagnosis, I started reaching out to friends and acquaintances. Eventually I came across someone who understood what we were going through, what life was really like for Max (and us), and suggested we take him to a behavioral therapist.  A what?  I mean come on, Max didn't have behavioral issues.  He didn't act out.  He wasn't aggressive towards others.  In fact he was the exact opposite - loving, sweet, docile, and according to every evaluation or test he'd been given, he was perfectly fine.  So what would we take him to a behavioral therapist?  No one wants to hear their child is outside the norm, but in the end going to see a behavioral therapist was one of the best decision we could have made.  (More on this in another post.)

While this experience totally sucked and tore me apart emotionally, it also shaped me as a parent.  I wouldn't be the person (or parent) I am today without having gone through this experience with my son.  Part of me is still angry and bitter, but I also learned a lot about myself, about my role as a mother and a parent, and realize now that it happened for a reason.

If I had to list the things I learned from this experience (and could pass along to anyone else going through something similar) here's what they would be:

1.) Always trust your gut!  Call it mother's intuition, call it a Mama Bear protecting her cub, call it whatever you want, but when you're at a crossroads or have to make a decision, go with that feeling in your gut.

2.) When people give you advice - be it someone in the medical profession, a family member, friend, or even someone you just met - they usually have good intentions.  But things like "well, I'm sure he won't starve to death", or "he'll eat when he's hungry", were just plain cruel and made me want to scream nasty things at them.  Proved by the fact that Max dropped so low on the weight chart that he ended up on a feeding tube, he was clearly not the type of kid that would "eat when he's hungry".  Max wasn't your typical picky or lazy eater, and yet from a medical perspective everyone treated him like he was, and just expected him to grow out of it.  While he did eventually overcome his fear of eating and to some degree I do think he needed time to mature and "grow out of it", it wasn't without a great amount of suffering (on his part) and effort (on our part).

3.) I had to be the most aggressive advocate possible for my son.  Even if it meant questioning everything I was being told.  I had to learn the hard way that just because something works for "most" kids doesn't necessarily mean it would work for mine.  And not being afraid to get a second, third, or even fourth opinion.  This would become especially true when it came to my own health struggles down the road!