Maybe. Might Be. Wait and See.

Last week was stressful, as I’ve written.  The diagnosis of FPIES has been tough to bear so far, just in the fact that there are no easy solutions to this problem.  The more I read – the more I learn – the more scared I get about what we may face in the future.  I’m trying very hard not to borrow trouble, or let the worry overwhelm me, but I feel I would be foolish if I didn’t consider the problems we may encounter and try to stave them off through knowledge and planning.

It’s a tough row to hoe.

As for immediate concerns, I think I wrote about how Mr. Happy seemed to be having some kind of reaction to the Neocate last week.  Each day seemed to be getting worse, until on Friday he was acting as I wrote in the last post.

In my reading, I saw a post someone made on a message board about the caloric content of formula, and how to make their babies’ formula a different caloric content.  This was a new concept to me; previously, I strictly followed the directions printed on the can.  I didn’t consider that watering it down or thickening it up was even possible.  I also read something about thresholds.  About how a child can sometimes handle a certain amount of a food but not more.  Someone else wrote how their child didn’t seem to do well on the formula because a certain element of the formula ‘sits hard’ on the tummy.

This got me thinking – maybe if we watered down the formula, he wouldn’t have so many problems. It might lower the part of the formula that ‘sits hard’ on the tummy, and may also lower the quantity of whatever is in the formula that he’s reacting to into an ‘under the threshold’ quantity. Plus, it may serve to help hydrate him better.

So for his last bottle on Friday night, instead of 8 scoops of formula to 8 ounces of water, I made the last bottle with 6 scoops of formula to 8 ounces of water.  (Don’t worry, he only drinks 1.5-4.5 ounces at a stretch…we just pre-make bigger bottles of formula to use.)

He seemed okay on it.  He didn’t spit up afterwards, and he didn’t gag or choke, or cough, or stiffen up in pain at any point in the drinking of it.

So we kept him on the diluted formula all day Saturday.  And all day, he didn’t gag, choke, cough, spit up, or stiffen in pain.

This morning, I made his bottles at the 8/8 ratio again.  I wanted to see how he would react.

All day, he has spit up after nearly every bottle, he has coughed frequently throughout the day, he has choked and gagged several times, and he has stiffened up in pain a few times today.

So now I get to decide which doctor to call: the GI or the Allergist?  Which one do I mention this to?

Also, how concerned should I be about him getting his appropriate caloric and nutritional intake with watering the formula down like this?

Oh, and also, when he’s on the 8/8 ratio he doesn’t wet very many diapers, and he doesn’t wet them very thoroughly.  On Saturday, his diapers were nice and full.  So is he just dehydrated, and that’s why the formula is causing these reactions?

I just don’t know.

The worst part is that the big formula experiment I’m in is a very mild, very simple example of what I will deal with every single time I introduce a new food to him for the next 3 years (at least).

I’m scared.

_____

We’re also watching Mr. Charm more closely now that we know what FPIES is and what to look for.  I really think he has it, too.

He has been eating less and less over the last four? Five? Six? months.  It’s been concerning, but because he’s obviously still growing and meeting milestones, I chalked it up to toddler pickiness and moved on.  My Mom has mentioned several times to me as reassurance that “any child with 3 squares placed in front of him every day will not starve”.  Good point.

Except, in my reading about FPIES, it’s not true.  FPIES kids will starve themselves, even when food is in front of them, because they’ve learned to associate food with pain.  Mr. Charm does NOT have acute FPIES, where he vomits and goes into shock, but he has many of the other symptoms of FPIES –  or, at least, a serious food intolerance – and I’m concerned, now, that he’s learning to associate eating with being uncomfortable or in pain.

This morning he would eat NOTHING that the Geek offered him.  NOT ONE BITE OF ANYTHING.

At lunch, I offered him a Turkey & Rice Toddler meal (one of the only supposedly “safe” pre-made foods we can serve him) and he ate half of it, along with about 5 potato chips and a piece of turkey lunch meat.

I ask you, do you know of any toddler that would not eat more than 5 potato chips at a time??

Immediately after lunch, I put him down for a nap.  He woke up only an hour and a half later, and though he seemed in good spirits at the time, within 30 minutes of waking he turned into a Holy Terror.

He whined.  He cried.  He screamed.  He fell to the floor in fits.  His rambunctious playing had a decidedly frantic feel about it.

He stayed like that all. day. long.

Turkey.  Rice.  Two of the biggest FPIES trigger foods.

How much of his belligerence and fit pitching is his age, and how much is a previously undiagnosed food intolerance?

He mooched snacks from us all day, although he has gotten more adamant that we only give him what he wants for snacks.  He takes me by the hand, walks me to whichever cabinet holds whichever snack he wants, turns and says “UP”, and after I pick him up, he opens the cabinet and then points to which snack he will accept.

Today he wanted Snickerdoodle cookies.  He ate two.  Then he wanted pretzels.  He…grazed…on them all day, but almost all that we gave him wound up on the floor as toys.

He mooched about 8 bites of my cereal with almond milk.

He refused to drink more than a few swallows of the chocolate almond milk I got for him.  (What kid doesn’t like chocolate milk?)

At dinner, he ate none of the corn, and only a few bites of the chicken.  The rest he played with, either putting it in and taking it out of a small ramekin, or throwing it on the floor.

Today’s menu for Mr. Charm was NOT a healthy diet.  He’s been eating like this for months now.  Every now and again he’ll have a good day where he eats fairly well, but the pickiness or avoidance is slowly getting worse.

And the behavior is identical.  Some days he’s great.  Some days he’s great…until he’s suddenly NOT – and for no apparent reason.  Some days he’s awful all day long.  So how much of this is ‘normal toddler’, and how much is a sign of something else?

The elimination diet we’re going to be starting this week will, hopefully, help, but the thing I’m most looking forward to (even while I’m going to dread doing it) is the food/behavior journals.

All three of us will be keeping a journal (until I start nursing Mr. Happy again, then he’ll have a journal, too).  The Geek and I suspect that we may have some food intolerances,  though ours are quite a bit milder than either of our kiddos.  Mostly, we’re suspecting they affect our sleep and mood more than anything.  For Mr. Charm, though, this may be the answer we need to find out if he truly is intolerant to things, and what those things do to him.  Plus, if we can start serving him only foods that don’t make him feel icky, he may regain his appetite and start to grow better.

After all, he’s  never been labeled “failure to thrive”, but he went from the 90th percentile on  height and weight at birth down to his ongoing, hovering 10-25th percentile.  Maybe food intolerances are the answer to his growth pattern.

Maybe, maybe, maybe…sigh.  I don’t know.  I just don’t know.

There are so many maybe’s…wait and see’s…so many questions – could it be this, or that?  For all of us, now, but mostly for the kids.

I will handle it.  I have no choice.  But for today, I’m scared.

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