Monday, February 11, 2013


Tests, I don't like tests. I Have always been too anxious a person to be a good test taker. Now as a parent I"m afraid I'm worse. Having to watch my little ones go through tests, well okay the medical tests I'm talking about now---well I dislike very much.

Life has been pretty darn good. I guess many of us bloggers can agree when you don't hear from us in awhile, it generally means things are status quo (or better). At least for me personally, I tend to write when I'm stressed about something. It helps to get it down on paper--well you know what I mean. It has always been a way for me to sort things out, gain perspective. If someone is struggling with something similar, well maybe in a small way its helpful to someone else.

Back here we first learned about the term Failure to thrive. I still wish they could come up with a better term, really! Anyway, things have been going along. I certainly don't have big eaters or fast growers but with some dietary changes and prescription soy shakes, we've certainly made some gains. Not the big ones that any of the docs have hoped for but slow and steady gradual gains. It should be called the pop tart and oreo diet because lets be honest, I totally abandoned the healthy olive oils, veggies, avocado spread stuff they wouldn't eat anyway in favor of a little junk food when faced with the alternative of feeding tubes. Yes, it came down to that discussion. When the nutritionist explained to me that no calorie is a "wasted" calorie when it comes to a growing child, it clicked. I still offer healthy foods, don't get me wrong but I let go of the guilt of the dreaded "junk" food if it meant that my boys could grow.

So a year and a half later we are still plugging along quietly. We are focusing on all the developmental gains the boys are making at school (more on that later), enjoying family and friends and the holidays and we hit a bump in the road.

A couple weeks ago I took Nicholas to the doctors for a check up, noticing his bathroom habits had changed. We got the okay to use some laxatives to help get things moving again. He's always needed miralax since he was a babe but even increasing that wasn't helping anything. So we used some laxatives  for a few days and it seemed to help some. Until we stopped using it and then nothing for four days and the cycle would start again. Then I realized his appetite (never very good mind you) but now was almost non existent. To the doctors again, and she weighed him. Sure enough he had lost a pound and a half. What the heck? We went through "what else has changed?" talk. Can't come up with a darn thing. Now I'm keeping a food and bathroom log and feeling incredibly discouraged.

Before you start sending me notes, PLEASE don't tell a momma with a failure to thrive kid to just leave him at your house for a week and you'll get him to fatten up. honestly. All that feels like is its our fault, that WE are not doing something right. Trust me, I have done EVERYTHING I can think of to get my kid to eat. I have been bombarded with well meaning advice. For a mom with two little ones who could care less about eating, I spend way too much time thinking about their food only to end up throwing most of it away. All the boards I go to that talk about getting the most bang for your buck in terms of high calorie foods but they are all laden with things my two can't eat because of their food allergies. No milk, no eggs, no tree nuts. As frustrating as their food allergies are, its not the root of the issue. The issue is that right now Nicholas could care less about eating. Get him up in the morning from not eating all night long, should be ready to eat something, right? Nope. doesn't care, wants to play. Eats ONE bite of toast OR pop tart OR soy yogurt and says he's not hungry. He'd rather play. I beg him to take sips of his high calorie shake. I beg, plead, offer him to watch his favorite cartoon for five minutes if he just finishes four ounces. I have resorted to try anything to get the calories in, sometimes it works, sometimes it doesn't.

I have bribed, coerced, offered choices, taken away choices, offered nothing but his favorite foods, pretend I don't care about the food battle, made him sit at the table for XX amount more bites, offered a million snacks instead of meals, then stopped offering snacks and only done meals, offered dessert if he takes two more bites, refuse dessert if he doesn't. Honestly you know what he ate for dessert the other night? One quarter of an oreo cookie. I'm not kidding, then he was done. I have done everything honestly but force feed him. I have tried sending him to bed hungry when he doesn't want whats in front of him--really. except he's not. He doesn't care. Seriously. I understand the "typical" kid needs encouragement to eat their veggies, but to eat anything? I'm sorry--this just isn't normal and its ridiculously stressful.

Then to the next common discussion: nope my hubby and I are not giants. we certainly don't expect our kids to be either. We are not disillusioned. But an almost four year old shouldn't be losing weight without a reason. He hasn't been ill with exception of the run of the mill cold. Heck his twin brother had a terrible GI bug recently and he was still out eating and drinking his brother while being ill. And Alex certainly isn't a big eater either, Just doesn't make sense. Nicholas is down to 23 pounds and change. He's almost four years old.

The thing about "failure to thrive" is you very often don't get a "here's why." Its whats given when you have checked everything else out for inadequate growth and come up empty. So we may be stuck there, I don't know. He may have just hit a "stop" in the journey of "spurt and stop" and maybe he'll just pick up a little more again like nothing happened. I don't know.

We have a new pediatrician since our move to the new house and I trust her whole heartedly. She knows I'm worried and I think she is a bit too. She's doing a basic work up with blood counts, checking his thyroid and even checking for celiac disease just in case. We will get results in a few days. If nothing shows up on the blood work, we will trial a reflux medication. He had a strong history of this in the past and apparently children can have reflux without all of the typical symptoms. We'll trial it for two weeks to see if it helps with his appetite at all and if not we can file that away too. We are waiting on our follow up appointment with GI in four weeks as well.

Its a strange thing about these tests. I don't know what I"m actually hoping for. Part of me hopes for everything to come back normal, because ofcourse you don't WISH for anything to be wrong. But then again, then you're stuck with "what now?" what do we do with that? The other part hopes for a reason, and a fix but ofcourse you want it to be an easy fix, not something troublesome or scary. I know any one can relate to that.

so for now we wait and see.......

All the tests came back normal, which is a HUGE sigh of relief. Nothing major going on which is a blessing but also leaves us wondering what the heck. We will still be consulting with GI in a couple weeks and I even think his eating has picked up the slightest bit so here's hoping. The doctor also decided to throw in some food allergy testing to re-check and the results stressed me out a bit. We already know he's highly allergic to everything dairy and then to a lesser extent, nuts and eggs. But the test came back that he's also allergic to soy. I kinda freaked out for a minute. His diet is pretty heavy in soy, and his main way of getting the extra calories with his prescription shakes. I didn't know what I was going to do. I talked with the doctor later and she talked me down from the ledge. She doesn't think its a significant increase and he's tolerating it fine. He's not vomiting, having hives or heck even eczema, all the things dairy did to him and his brother. She doesn't think whats going on with him now is related to the soy. We will continue to watch him and I am personally trying to find other alternatives that I can swap out without him missing out on the calories.

PLEASE don't send me messages about the potential negative impact of using soy in our diet. 

When he was a babe in the NICU he had A LOT of tests done and on many it was noted that he had slow motility in his intestines. Basically means things go through very slowly. I'm guessing this is probably not a thing one outgrows, that some are just wired this way. My theory is perhaps this is part of the picture. Maybe not the whole picture, maybe a lot of little things colliding but it would make sense. If things move through slowly, you never really feel empty or hungry because in a sense, there's always food in there. For the first year of his life he and his brother were on a medication that supposedly helped increase the motility. We weaned them off eventually because we were concerned about all of the side effects and honestly we didn't really see a change so I don't think it truly helped anyway.

I'm sure we will be talking to GI at length but it may just be one of those things that we have to deal with and work around.


Anonymous said...

My great niece is having a similar problem and they have detected that she had a overly huge amount of bacteria in her body. She would go all day without eating without being phased by it. They have started her on medicine to try and rid her of this bacteria,but it is still a real challenge. I am not sure what test they used to detect this but it is the root of the problem

Alli said...

Medical marijuana? Tee hee hee ... juuuuuuuuuuust kidding!!! =D

liz kulp said...

are there any meds that would stimulate the hunger center in the brain? if not... maybe we should invent one... !

Holli said...

there was one that we tried, periactin last summer. worked for a very brief period of time but then it stopped. also had lots of side effects.

Anonymous said...

I am allergic to tree nuts and very sensitive to milk and gluten. When I was underweight I had a dietician tell me that I was just screwed. Her only suggestion was massive amounts of fruit juice.
My son had trouble with weight and eventually starting losing. He turned out to have atypical gluten intolerance that was only diagnosed based on a family trend. Good luck solving your mystery! I wish you all good health and less stress! -Joy, mom of 3

cfallone said...

Hey Holli! You know I am on your side. I do not have answers but I do know we need a night out! Thinking of you and wishing things weren't so difficult. Hang in there.